ethnographic research peer reviewed articles

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• Published: 05 December 2021

Ethnographic research as an evolving method for supporting healthcare improvement skills: a scoping review

• Georgia B. Black   ORCID: orcid.org/0000-0003-2676-5071 1 ,
• Sandra van Os   ORCID: orcid.org/0000-0003-0021-8758 1 ,
• Samantha Machen   ORCID: orcid.org/0000-0003-4727-4423 1 &
• Naomi J. Fulop   ORCID: orcid.org/0000-0001-5306-6140 1  

BMC Medical Research Methodology volume  21 , Article number:  274 ( 2021 ) Cite this article

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A Correction to this article was published on 11 April 2022

This article has been updated

The relationship between ethnography and healthcare improvement has been the subject of methodological concern. We conducted a scoping review of ethnographic literature on healthcare improvement topics, with two aims: (1) to describe current ethnographic methods and practices in healthcare improvement research and (2) to consider how these may affect habit and skill formation in the service of healthcare improvement.

We used a scoping review methodology drawing on Arksey and O’Malley’s methods and more recent guidance. We systematically searched electronic databases including Medline, PsychINFO, EMBASE and CINAHL for papers published between April 2013 – April 2018, with an update in September 2019. Information about study aims, methodology and recommendations for improvement were extracted. We used a theoretical framework outlining the habits and skills required for healthcare improvement to consider how ethnographic research may foster improvement skills.

We included 274 studies covering a wide range of healthcare topics and methods. Ethnography was commonly used for healthcare improvement research about vulnerable populations, e.g. elderly, psychiatry. Focussed ethnography was a prominent method, using a rapid feedback loop into improvement through focus and insider status. Ethnographic approaches such as the use of theory and focus on every day practices can foster improvement skills and habits such as creativity, learning and systems thinking.

Conclusions

We have identified that a variety of ethnographic approaches can be relevant to improvement. The skills and habits we identified may help ethnographers reflect on their approaches in planning healthcare improvement studies and guide peer-review in this field. An important area of future research will be to understand how ethnographic findings are received by decision-makers.

Peer Review reports

Research can help to support the practice of healthcare improvement, and identify ways to “improve improvement” [ 1 ]. Ethnography has been identified particularly as a research method that can show what happens routinely in healthcare, and reveal the ‘ what and how of improving patient care [ 2 ]. Ethnography is not one method, but a paradigm of mainly qualitative research involving direct observations of people and places, producing a written account of natural or everyday behaviours and ideas [ 3 ]. Ethnographic research can identify contextual barriers to healthcare improvement. For example, Waring and colleagues suggested that hospital discharge could be improved by allowing staff to have more opportunities for informal communication [ 4 ].

There have been advances in ethnographic methods that support its role in supporting healthcare improvement. Multi-site, collaborative modalities of ethnography have evolved that suit the networked nature of modern healthcare [ 5 ]. Similarly, rapid ethnographic approaches (e.g. Bentley et al. [ 6 ];) meet the needs of improvement activities to produce findings within short timeframes [ 7 ]. However, the production of sustained ethnographic fieldwork has waned in response to demands for rapid evidence [ 6 , 8 , 9 ]. Critics of rapid ethnographic methods worry that they are diluting ethnography within applied contexts more widely [ 5 , 10 ].

The relationship between ethnography and healthcare improvement has been the subject of methodological concern [ 8 ]. The first concern is that some research identified as ethnography does not fit within the ethnographic paradigm, merely collecting observational data without a theoretical analysis, interpretation or researcher reflexivity [ 11 ]. A second concern is whether the topics of ethnographic inquiry produce findings that are seen as useful for improvement [ 12 ], particularly if they do not make explicit recommendations or produce checklists [ 8 , 13 , 14 , 15 ]. Authors fear that ethnographic findings that capture complexity [ 16 ] and expose taken-for-granted behaviours and phenomena [ 14 , 17 ] may be too abstract to be relevant to healthcare improvement [ 8 ]. However, these critiques position ethnographic research as a product which may be taken up by healthcare improvers, rather than seeing ethnographic work itself as an improvement activity. We take the view that healthcare improvement aims to change human behaviour to improve patient care, and is therefore reliant on the development of particular skills and habits (such as good communication) [ 18 ]. We would consider that engaging in ethnographic research may support skill development and habit formation that serves healthcare improvement.

In the literature of ethnography in healthcare improvement, there is not much discussion of the close relationship between methodological features of ethnographic research, and their impact on improvement skills. The aim of this paper is twofold: (1) to describe current ethnographic methods and practices in healthcare improvement research and (2) to consider how these may affect habit and skill formation in the service of healthcare improvement [ 19 ].

This is a scoping review following the methods outlined by Arksey & O’Malley and later refined by Levac et al., [ 20 , 21 ] including a systematically conducted literature review and reported in accordance with the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR; see Additional file 1 for PRISMA checklist). No protocol was published for this review. Our literature search and analyses were conducted iteratively, searching reference lists and undertaking discussions with colleagues about key lines of argument. We also held a workshop at Health Services Research UK conference in 2018 on this topic to gain a wide range of stakeholder views.

Systematic retrieval of empirical papers and purposive sampling

Our search strategy was designed to capture a wide range of approaches to ethnography from different journals, healthcare settings and types of research environment. It was not our aim to capture every study using this methodology, but to map the current field. Thus we did not search grey literature, books or monographs. The search strategy was developed and piloted in consultation with a health librarian. Medline (on OVID platform), PsychINFO, CINAHL and EMBASE databases were searched, and six journals were hand-searched, including: BMJ Quality & Safety, Social Science and Medicine, Medical Anthropology, Cochrane library, Sociology of Health and Illness and Implementation Science. These databases were searched between dates April 2013 – April 2018 and an update was performed in September 2019 using the search terms outlined in Additional file 2 . We limited the search to these dates in order to capture the most recent methodological characteristics of ethnographic studies in this field.

We screened titles and then abstracts according to the inclusion and exclusion criteria detailed in Table 1 . We included studies which self-identified as using ethnography or ethnographic methods rather than using our own criteria. This is because ethnography can be hard to define, and use of criteria may risk excluding papers which exemplify the sorts of tensions and workarounds we are trying to capture.

The retrieved papers were screened by GB, SVO and SM based on inclusion and exclusion criteria (Table 1 ). The total number of papers after screening titles, abstracts and full texts was 274 (Fig. 1 ).

PRISMA statement of all references retrieved, screened and included in the scoping review

Numerical charting

Characteristics of each paper, such as title, authors, journal, year, country and healthcare subject area were extracted (see Table 2 ).

Thematic analysis and development

We coded all 274 papers using NVivo software for stated aims and recommendations. This included close reading, and retrieval of key ideas and quotations from the papers that exemplified key ideas in relation to healthcare improvement, methodology and the authors’ reflections on these. The coded extracts of aims and recommendation in conjunction with the closer reading of the sub-sample were used to inductively develop conceptual ideas, such as how the corpus of papers explicitly aimed to contribute to healthcare improvement, and if not, how this affected the types of conclusions drawn. Some papers were read in greater depth to understand how the authors’ methods related to their findings and conclusions. In order to consider how ethnography supports habits and skills associated with healthcare improvement, we drew on a framework which identifies five habits of ‘improvers’: creativity, learning, systems thinking, resilience and influencing [ 19 ]. Applying this model to our selected papers, we mapped traits or approaches to the ethnographic studies that exemplified these habits either in the authors, or as part of developing these habits in others (e.g. healthcare decision-makers and professionals). Thematic interpretations and lines of argument were generated and discussed by all the authors.

Overview of study characteristics

The included studies covered a wide range of ethnographic methodologies and healthcare subjects, published internationally (Table 2 ) in predominantly social science and clinical journals (see Additional file 3 ). The full list of the 274 included studies is available in Additional file 4 .

Most studies described themselves as an ‘ethnography’ or ‘ethnographic’, although some described their methodology as ‘mixed methods’ including ethnographic components. For example, Collet et al. conducted a mixed methods participatory action research study using observations to produce an “ethnographic description” [ 22 ].

Almost all studies relied on observation and interviews as the main data sources. It was not always specified whether researchers took a participant or non-participant approach to observation. There were some examples of other data sources e.g. video data, surveys, documents, field notes, diaries, and artefacts. A few examples contained a paucity of data, such as only video data [ 23 ], limited fieldwork [ 24 ], a small number of interviewees [ 25 ], or reliance on focus group data alone [ 26 ]. Methods associated with qualitative methodology (but not necessarily ethnographic) were also used, such as data ‘saturation’ to denote that additional data did not provide new insights into the topic [ 27 ].

There were a number of minority or unusual ethnographic variations:

Quantitative ethnography [ 23 ]: temporal coding of physicians' workflow and interaction with the electronic health record system, and their patient.

Cognitive ethnography [ 28 ]: “identifying and elaborating distributed cognitive processes that occur when an individual enacts purposeful improvements in a clinical context”.

Street-level organizational ethnography [ 29 ]: intensive case study methods to explore the implications of healthcare policy at a street level.

Phenomenological ethnographies [ 30 ]: focussing on the lived experience and meanings associated with a phenomenon.

Geo-mapping [ 31 ]: geomapping of selected service data to define Latino immigrant community before conducting interviews and observations.

Use of different types of ethnography to support healthcare improvement

We found that many studies used methods that could identify issues relating to power and vulnerability, with potential relevance to how healthcare improvement problems are defined and solved, and by whom [ 1 ]. For example we noted a significant minority of studies using institutional and critical ethnography, mostly in vulnerable populations (see Table 3 ). These studies were explicitly attentive to systems and power relations, rather than on individual practices. We suggest that the use of geographically-oriented methods such as geo-mapping and street-level organisational ethnography are also attentive to the power structures inherent in place and space, and could be relevant to other geographical healthcare improvement topics such as networked healthcare systems, care at home and patient travel for treatment.

The high prevalence of ethnographic studies with vulnerable populations (e.g. psychiatry, end of life care) suggests that ethnography is also being conceptualised as an emancipatory method, reversing healthcare power structures in its focus. This has been a traditional focus of ethnography since social changes in power and representation in the 1970s, incorporated into the development of healthcare research methodology [ 40 , 41 ]. Some methods used were calculated to maximise the potential for supporting vulnerable groups, for example, Nightingale et al. [ 42 ] used focused ethnography (prolonged fieldwork in a small number of settings) to look at patient-professional interactions in paediatric chronic illness settings. The authors suggested that focussed ethnography is particularly suited to settings where fostering trust is essential. We would also suggest that ethnography may be particularly suited to settings in which participants are less able to verbalise their experiences.

The reviewed studies suggested that video ethnography can support healthcare improvement at a team level. For example, Stevens et al. [ 43 ] promoted video ethnography as a way to capture in-depth data on intimate interactions, in their study of elective caesareans. The video data allowed them to make use of timing data (e.g. of certain actions), physical positioning of different actors and equipment, and verbatim dialogue recording. The video data also suited the technical nature of the procedure, which was relatively time-limited. This form of data collection may not suit environments where healthcare activities are more spread out.

The impact of healthcare practitioner involvement in ethnographic fieldwork and findings

We noted that the use of ethnography for healthcare improvement has led to healthcare practitioners’ widespread involvement in data collection or analysis. We suggest that this is a form of negotiation across the healthcare-academia boundary, translating from ‘real world’ to data and back again. This has potential to create rich and relevant ethnographic studies that are geared towards improvement. However, some studies were undermined by a lack of reflexivity about the dual practitioner-ethnographer role.

A significant number of papers involved healthcare practitioners in fieldwork (e.g. Abdulrehman, 2017, Hoare et al. 2013; [ 37 , 44 ]). For example in Hoare et al. the lead researcher was a nurse, and wrote that they hoped “to bring both an emic and etic perspective to the data collection by bracketing my emic sense of self as a nurse practitioner in order to become a participant observer within my own general practice ” [ 37 ]. In this study, the findings fed directly into local service improvement as the lead researcher felt compelled to “share new ‘best practice’ information and join in the conversation.” There was little discussion about how this affected the generalisability of the findings, and whether their recommendations were adopted.

Similarly, Bergenholz et al. [ 45 ] conducted a study where a nursing researcher completed the main fieldwork and “assisted the nurses with practical care .” They acknowledged that “This may have caused limitations with regards to ‘blind spots’ in the nursing practice, but that it also gave access to a field that might be difficult for ‘outside-outsiders’ to gain .” However, there was no commentary on where the blind spots or extra access occurred, and how this may have affected the relevance and dissemination of their findings.

How might ethnography support healthcare improvement habits?

In this section, we evaluate the studies included in the review in terms of how their methods relate to improvement. We draw on the idea that successful improvement is based on a set of habits and their related skills acquired through experience and practice [ 19 ]. This section is structured around Lucas’s five habits of ‘improvers’: creativity, learning, systems thinking, resilience and influencing [ 19 ]. Under those headings, we describe the mechanisms by which ethnographic studies can support healthcare improvement habits, using illustrative examples.

Resilience is defined as being adaptable, particularly tolerating calculated risks and uncertainty, and proceeding with optimism. Being able to recover from adverse events is core to improvement, reframing them as opportunities. Adaptation and the ability to bounce back from adverse events and variation are core to improvement.

Tolerating the uncertainty of ethnographic data collection

While we did not relate these traits to any particular ethnographic approach in our studies, we would consider that undertaking any ethnographic project requires resilience, as data collection is inherently exploratory and uncertain. For example, Belanger et al. wanted to know how health care providers and their patients approach patient participation in palliative care decisions. The authors explicitly eschewed the pull to create guidelines or other formalised knowledge, but aimed to explore the “unforeseen and somewhat unavoidable ways in which discursive practices prompt or impede patient participation during these interactions.” [ 46 ]

Creativity is defined as working together to encourage fresh thinking by generating ideas and thinking critically.

Using a theoretical lens

Researchers may consider healthcare through a particular theory or framework (e.g. private ordering [ 47 ], masculine discourse [ 48 ], compassion [ 49 ]). The restriction of the theoretical lens enables critical thinking, and keeps the ethnographer creatively engaged. For example, Mylopoulos & Farhat [ 28 ] used the concept of adaptive expertise in a cognitive ethnography to explore “the phenomenon of purposeful improvement” in a teaching hospital. This theoretical lens revealed that clinicians were engaging in “invisible” improvement in their daily work, in “specific activities such as scheduling, establishing patient relationships, designing physical space and building supporting resources”. The authors suggested that these practices were devalued in comparison to more formal improvement activities, justifying the utility of the ‘adaptive expertise’ theory in bringing the daily improvement practices to light.

Challenging current problems and perspectives

We identified studies that challenged or reframed existing improvement problems e.g. Mishra [ 50 ]. This role removes the ‘blinkers’ of improvement research [ 51 ], and can ‘dissolve’ previously intractable implementation problems. For example, Boonan et al. [ 52 ] studied the practice of bar-coded medication from the perspective of nurses using the intervention. In their discussion, the authors challenge the assumption that if you introduce technology, then you will mitigate human factor risks. They highlighted that external pressures on hospitals perpetuate this perspective, and that “nurses and patients are consequently drawn into this discourse and institutional ruling, to which they are not oblivious”. Their recommendation was to understand the skills of nurses in tailoring technology to meet individual patients’ needs rather than trusting in systems blindly.

Learning is defined as harnessing curiosity and using reflective processes to extract meaning from experience.

Inviting reflection

We noted that some studies did not make explicit recommendations for improvement, but wrote their findings in a manner that would invite reflection on its subject matter. For example, Thomas & Latimer [ 53 ] wrote that they view their role as provocateurs of new ideas, stating that their intention “is not to propose specific policies or discourses designed to change or improve practice. More modestly, we hope that by analysing the everyday and by theorising the mundane, this article will ignite reflexive, ethical and pluralistic dialogues – and so better communication between practitioners, parents and the wider lay public – around reproductive technologies and medical conditions” (authors’ underline; p.951-2) [ 53 ]. Others such as Mackintosh et al [ 54 ] used their discussion section to examine their results in the context of other theories and provide illumination: “Our focus on trajectories illuminates the physiological process of birth and the unfolding pathology of illness (and death). This frame provides a means for us to link the agency of those involved in organising the care of acutely ill patients with the wider socio-political factors beyond the clinic, such as governmentality and risk (Heyman 2010, Waring 2007), death brokering (Timmermans 2005) and the medicalisation of birth and death (De Vries 1981).” (p.264). These two examples show that ethnographic work can be offered as an opportunity for learning and reflection, without a translation to specific recommendations.

Supporting a more ethical, expansive, inclusive, and participatory mode of healthcare

Problem-finding is highlighted as an important part of learning in improvement [ 19 ]. Several studies paid attention to multivocality and power, using this to find problematic, unethical and exclusive practices in healthcare. For example, some studies reported previously unheard viewpoints [ 55 , 56 , 57 ], or identified restrictive organisational barriers and normative assumptions [ 58 , 59 ]. Others promoted ethnography as a way of exploring ethics and morality [ 47 , 60 , 61 ], such as criticising research that prioritizes the needs of individuals over the good of society [ 62 ]. Ross et al. [ 63 ] suggested that it is also more ethical to use critical ethnography than other evaluative methods in researching vulnerable populations (e.g. neurological illness), by being able to “explore perceived political and emancipatory implications, [clarify] existing power differentials and [maintain] an explicit focus on action” .

Some studies directly researched power within the healthcare setting. For example, Batch and Windsor’s study of nursing workforce suggested that senior nurse leaders should use their positions to advocate for better working conditions [ 35 ], “ Manageable nurse/patient ratios, flexible patient-centred work models, equal opportunity for advancement, skill development for all and unit teamwork promotion”. Challenging traditional cultural assumptions that have produced and reproduced stereotypes is problematic because they most often are, by their very nature, invisible. In a more critical approach, Gesbeck’s thesis [ 62 ] on diabetes care work challenges the very mechanism of achieving healthcare improvement through research, stating that “we need to change the social and political context in which health care policy is made. This requires social change that prioritizes the good of the society over the good of the individual—a position directly opposed to the current system oriented toward profit and steeped in the ideology of personal responsibility.”

Systems thinking

Systems thinking is defined as seeing whole systems as well as their parts and recognising complex relationships, connections and interdependencies.

Suggesting reorientation to new ‘problem’ areas

We found that many ethnographic studies emphasised skills of synthesis and connection-making, reorienting improvement to different areas, for example in overarching policy recommendations (e.g. Hughes [ 36 ]; Liu et al. [ 64 ], Matinga et al. [ 65 ]), or resetting priorities. For example, Manias’ [ 66 ] ethnography of communication relating to family members' involvement in medication management in hospital suggests that “greater attention should be played on health professionals initiating communication in proactive ways ” [p.865]. In another example, Cable-Williams & Wilson’s (2017) focussed ethnography captures cultural factors within long-term care facilities. Their discussion suggests that acknowledgement of death is under-represented in front-line practice and government policy, reorienting discussions towards an integration of living and dying care.

Exposing hidden practices within the everyday

We found that several studies drew attention to ‘hidden’ practices in healthcare work, allowing them to evaluated and improved. For example, we found reference to practices such as coordinating [ 67 ], repair [ 68 ], caretaking [ 69 ], scaffolding [ 68 ], tinkering [ 52 ] and bricolage [ 58 ]. We also found that some studies had new interpretations of ‘the everyday’ or ‘taken-for-granted’ (e.g. nursing culture [ 34 , 35 , 45 , 70 ], interprofessional practice [ 67 , 71 , 72 , 73 , 74 , 75 ]). Authors’ outputs included frameworks [ 76 ] or models [ 69 , 71 , 77 , 78 ] that map these types of practices in a way that is helpful for intervention development or quality improvement. For example, Mackintosh et al. [ 54 ] looked at rescue practices in medical wards and maternity care settings using Strauss’s concept of the patient trajectory. Their findings highlighted the risks inherent in the wider social practices of hospital care, and suggested that improvement was needed at a level “beyond individual and team processes and technical safety solutions.”

Influencing

Influencing is defined as engaging others and gaining buy-in using a range of facilitative processes.

Direct translation of findings to targets for improvement

Lucas suggests that to be influential, ethnographic studies need to have some empathy with clinical reality, whilst being facilitative and comfortable with conflict [ 19 ]. This was shown in ethnographic studies that made pragmatic recommendations, such as in Jensen’s study of clinical simulation. They advised that simulation might be useful in staging “adverse event scenarios with a view to creating more controlled and safer environments.” ( 80). In MacKichan et al. [ 79 ] observations and interviews were used to understand how primary care access influenced decisions to seek help at the emergency department. The authors made empathic, actionable recommendations such as “ simplifying appointments systems and communicating mechanisms to patients.” (p.10).

Evaluating the context of healthcare improvement

By capturing contextual and social aspects of healthcare improvement, ethnographic evaluations can support leaders and managers who are trying to implement improvement activities. This is a particularly helpful trait in ethnographic studies that pay attention to politics, governance and social theory in their evaluation of new interventions, “zooming out” [ 80 ] beyond the patient-clinician interaction to broader social networks. For example, Tietbohl et al. [ 81 ] investigated the difficulties of implementing a patient decision support intervention (DESI) in primary care through the theoretical lens of relational coordination between “physician and clinical staff groups (healthcare professionals)”. The authors’ recommended attention to the “underlying barriers such as the relational dynamics in a medical clinic or healthcare organization” when creating policies and programs that support shared decision-making using support interventions. This sort of insight can make it more likely that new policies or interventions will succeed. This skill was particularly fertile in the tradition of techno-anthropology, exploring technology-induced errors and the real-world interaction between people and technology, e.g. decision-support tools [ 81 , 82 , 83 , 84 , 85 , 86 ], the introduction of robot caregivers [ 87 ] and clinical simulations [ 88 ]. Other approaches included an investigation of one intervention or change but with a theoretical lens of inquiry.

Summary of findings

This scoping review has identified the methodological characteristics of 5 years of published papers that self-identify as ethnography or ethnographic in the field of healthcare improvement. Ethnography is currently a popular research method in a wide range of healthcare topics, particularly in psychiatry, e.g. mental health, dementia and experiential concerns such as quality of life. Focused ethnography is a significant sub-group in healthcare, suggesting that messages about the importance of research timeliness have taken hold [ 89 ].

We have identified ethnographic methods reported in these papers, and considered their utility in developing skills and habits that support healthcare improvement. Specific practices associated with the ethnographic paradigm can encourage good habits (resilience, creativity, learning, systems thinking and influencing) in healthcare, which can support improvement. For example, using relevant theories to look at every day work in healthcare can foster creativity. The use of critical and institutional ethnography could increase skills in ‘systems thinking’ by critically evaluating how healthcare improvement problems are defined and solved, and by whom.

Comparison with previous literature

This scoping review is the first to consider how current ethnographic methods and practices may relate to healthcare improvement. Within the paradigm of applied healthcare research, there is normative value in being ‘useful’ or ‘impactful’ in our research, which affects our prospects for funding and career success [ 12 ]. However, our review has uncovered a multitude of ways that an ethnographic study can be useful in relation to healthcare improvement, without creating actionable findings. We found a spectrum of interactions with healthcare improvement: some authors explicitly eschewed recommendations or clinical implications; others made imperative statements about required changes to policy or practice. However, this diversity was not necessarily a reflection on how ‘traditional’ the ethnographic methodology was. This challenges the paper by Leslie et al. which puts ethnographic studies in two output categories with respect to healthcare improvement: critique versus feedback [ 8 ]. Instead, we uncovered a variety of ways that ethnography can support healthcare improvement habits, such as encouraging reflection, problem-finding and exposing hidden practices in healthcare.

We did find that supporting healthcare improvement through ethnographic research can require strategic effort, however. For example, we noted that several authors wrote multiple articles based on the same project, often for different types of journal to reach different audiences such as diverse readerships in health services and academic settings. For example, Collier and colleagues published two papers based on a video ethnography of end-of-life care (both in 2016), one in a healthcare quality journal [ 32 ] and one in a qualitative research journal [ 76 ]. The former is shorter, with explicit recommendations for patient safety, whereas the latter is longer, has more detailed results and long sections on reflexivity. Similarly, Grant published an article in a sociology journal [ 90 ] and a healthcare improvement paper [ 91 ] on the same work about medication safety. The sociological paper covered “spatio-temporal elements of articulation work” whereas the other put forward “key stages” and risks, suggesting that it was more closely oriented to improvement.

There have been some considerable debates about changes in ethnographic methods and tools, with concerns about lost researcher identity, dilution of the method, and challenges to “upholding ethnographic integrity” [ 92 ] . We contest this, suggesting that new variants such as focussed and cognitive ethnography are evolving in response to the complexity of hospitals and healthcare [ 93 ], while also being highly regulated, standardised and ordered by biomedicine. Such complex environments cannot be studied and improved under one paradigm alone. Ethnographic identity and method have also been affected by the cross-pollination of ethnography with other social science paradigms and applied environments (e.g. clinical trials, technology development). Debates about theoretical and methodological choices are not only made merely with respect to healthcare improvement, but also in response to professional pressures (e.g. university requirements for impact) [ 12 ], and the mores of taste situated within the overlapping communities of practice that evaluate ethnographic healthcare research [ 94 ]. That said, we echo previous authors’ calls for attention to reflexivity, particularly in embedded or clinician-as-researcher roles [ 95 ].

Our scoping review challenges a previously expressed concern that ethnographic studies may not produce findings that are useful for improvement [ 10 , 12 , 16 ]. By considering different ethnographic designs in relation to skills and habits needed for improvement, we have shown that studies need not necessarily produce ‘actionable findings’ in order to make a valuable contribution. Instead, we would characterise ethnography’s role in the canon of healthcare research methodologies as a way of enhancing improvement habits such as comfort with conflict, problem-finding and connection-making.

Strengths and limitations

This review has a number of limitations. The search may not have found all relevant studies, however the retrieved papers are intended as an exemplar rather than an exhaustive or aggregative review. The review is also limited to journal articles as evidence of researchers’ approach to improvement. This ignores many other ‘offline’ and ‘online’ activities such as meetings, presentations, blogs, books, and websites, which are conducted to disseminate findings and ideas. Our reliance on self-report for the identification of ethnographic studies will have excluded some studies within an ethnographic paradigm who chose different terms for their methodology (e.g. critical inquiry, case study). The strengths of this paper are its comprehensive coverage, incorporating all representative studies in healthcare research published within a five year period, and a wide range of ethnographic sub-types and healthcare subjects, drawn from an international pool of research communities.

We did not prescribe the right way for ethnographers to engage in healthcare improvement, indeed, we have identified that a variety of approaches can be relevant to improvement. The habits we identified may help ethnographers reflect on their approaches in planning healthcare improvement studies and guide peer-review in this field. Issues of taste, traditionalism and researcher identity need to be scrutinised in favour of value and audience. An important area of future research will be to understand how ethnographic findings are received by decision-makers, and further focused reviews on the relationship(s) between ethnographic methods, quality improvement skills and improvement outcomes.

Availability of data and materials

All papers included in the review are listed in Additional file 4 and are publicly available from their publishers’ websites.

Change history

11 april 2022.

A Correction to this paper has been published: https://doi.org/10.1186/s12874-022-01587-9

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Acknowledgements

The authors wish to thank Lorelei Jones, Natalie Armstrong, Justin Waring and Bill Lucas for their insightful comments and direction in the undertaking of this work.

This paper is independent research funded by the National Institute for Health Research CLAHRC North Thames. The views expressed in this publication are those of the author(s) and not necessarily those of the National Institute for Health Research or the Department of Health and Social Care.

NJF is an NIHR Senior Investigator. GB is supported by the Health Foundation’s grant to the University of Cambridge for The Healthcare Improvement Studies Institute.

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NJF and GB led the development and conceptualization of this scoping review and provided guidance on methods and design of the scoping review. GB, SVO and SM made contributions to study search, study screening, and all data extraction work. All authors analysed the data. All authors contributed to the writing and editing of the paper, and all authors have read and approved the manuscript.

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Black, G.B., van Os, S., Machen, S. et al. Ethnographic research as an evolving method for supporting healthcare improvement skills: a scoping review. BMC Med Res Methodol 21 , 274 (2021). https://doi.org/10.1186/s12874-021-01466-9

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Ethnographic research as an evolving method for supporting healthcare improvement skills: a scoping review

Affiliations.

• 1 Department of Applied Health Research, UCL, London, UK. [email protected].
• 2 Department of Applied Health Research, UCL, London, UK.
• PMID: 34865630
• PMCID: PMC8647364
• DOI: 10.1186/s12874-021-01466-9

Background: The relationship between ethnography and healthcare improvement has been the subject of methodological concern. We conducted a scoping review of ethnographic literature on healthcare improvement topics, with two aims: (1) to describe current ethnographic methods and practices in healthcare improvement research and (2) to consider how these may affect habit and skill formation in the service of healthcare improvement.

Methods: We used a scoping review methodology drawing on Arksey and O'Malley's methods and more recent guidance. We systematically searched electronic databases including Medline, PsychINFO, EMBASE and CINAHL for papers published between April 2013 - April 2018, with an update in September 2019. Information about study aims, methodology and recommendations for improvement were extracted. We used a theoretical framework outlining the habits and skills required for healthcare improvement to consider how ethnographic research may foster improvement skills.

Results: We included 283 studies covering a wide range of healthcare topics and methods. Ethnography was commonly used for healthcare improvement research about vulnerable populations, e.g. elderly, psychiatry. Focussed ethnography was a prominent method, using a rapid feedback loop into improvement through focus and insider status. Ethnographic approaches such as the use of theory and focus on every day practices can foster improvement skills and habits such as creativity, learning and systems thinking.

Conclusions: We have identified that a variety of ethnographic approaches can be relevant to improvement. The skills and habits we identified may help ethnographers reflect on their approaches in planning healthcare improvement studies and guide peer-review in this field. An important area of future research will be to understand how ethnographic findings are received by decision-makers.

Keywords: Ethnography; Healthcare improvement; Qualitative research.

© 2021. The Author(s).

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An introduction to the origins, history and principles of ethnography, gemma sinead ryan senior lecturer in health and social care (nursing), university of derby online learning, derby, england.

Background Ethnography is embedded in the history of research and has been considered a methodology in its own right. Its long history means those new to ethnography may find it complex to navigate the differing perspectives and its historical context. Philosophical perspectives further compound the complexities of understanding and making decisions about method.

Aim To introduce the historical context of ethnography and its wide-ranging and differing perspectives.

Discussion This paper provides an overview of the historical context of ethnography and discusses the different approaches to ethnography based on philosophical paradigms. Examples of ethnographic research in nursing literature are used to illustrate how these different approaches and types of ethnography can be used in nursing.

Conclusion Ethnographic research has much to contribute to nursing knowledge. However, it is important to understand the philosophical influences when making decisions about research approach.

Implications for practice This article provides an overview of the historic context of ethnography and may improve the knowledge of nurses wishing to employ ethnographic approaches in their own post-graduate and doctoral research.

Nurse Researcher . 24, 4, 15-21. doi: 10.7748/nr.2017.e1470

[email protected]

This article has been subject to external double-blind peer review and checked for plagiarism using automated software

None declared

Received: 08 March 2016

Accepted: 06 October 2016

ethnography - critical ethnography - social anthropology - positivist ethnography - netnography - nursing research

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Ethnographic methods for process evaluations of complex health behaviour interventions

• Sarah Morgan-Trimmer 1 &
• Fiona Wood 2  

Trials volume  17 , Article number:  232 ( 2016 ) Cite this article

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This article outlines the contribution that ethnography could make to process evaluations for trials of complex health-behaviour interventions. Process evaluations are increasingly used to examine how health-behaviour interventions operate to produce outcomes and often employ qualitative methods to do this. Ethnography shares commonalities with the qualitative methods currently used in health-behaviour evaluations but has a distinctive approach over and above these methods. It is an overlooked methodology in trials of complex health-behaviour interventions that has much to contribute to the understanding of how interventions work. These benefits are discussed here with respect to three strengths of ethnographic methodology: (1) producing valid data, (2) understanding data within social contexts, and (3) building theory productively. The limitations of ethnography within the context of process evaluations are also discussed.

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Qualitative methods are increasingly used in randomised controlled trials (RCTs) of complex health-behaviour interventions at the various stages of complex intervention development and evaluation, including process evaluation [ 1 , 2 ]. Qualitative methods can inform the understanding of a problem, the development of an intervention, and the understanding of how an intervention is delivered by agencies and received by participants. In process evaluations, qualitative data can contribute insights into how interventions operate and how outcomes are reached, although in practice, qualitative research is not always used to inform the trials they are part of [ 1 ]. Interviews and focus groups are commonly used qualitative methods in process evaluations; for example, they are often used to explore the acceptability of an intervention to participants [ 3 ]. Ethnography is a methodology which largely, though not exclusively, employs qualitative methods; however, it has a distinctive approach over and above the particular methods it employs, which could be useful in process evaluations to explore the detail of how complex interventions operate. Despite its benefits, the potential contribution of ethnography to process evaluation has not been realised. This article briefly introduces ethnography as a methodology and then discusses three useful features that are relevant to process evaluations: (1) producing valid data, (2) understanding data within social contexts, and (3) building theory productively. The comments made in this article could be applicable to other types of complex interventions besides those targeting health-behaviour change. The focus here on health-behaviour change and public health is because there is an increasing recognition of the social determinants of health in public health research; studies are consequently addressing the social, environmental, and organisational contexts to a greater degree. Ethnography has traditionally examined social contexts and is, therefore, a very relevant methodology for this field.

Ethnography is characterised by long-term participant observation as a central method, where the researcher spends an extended period of time in a social group in order to collect data. The term ‘ethnography’ is often used interchangeably with the term ‘participant observation’, but it is actually a much broader methodology than this, both because of the range of methods it employs and because it encompasses an overall orientation to research, which is detailed below. It comprises a collection of different ways of eliciting and collecting data, including the observation of individuals and groups of individuals, unstructured interviews, documentary analysis, and the use of a researcher’s field notes. It employs these methods within a long-term, holistic, and flexible approach to data collection:

The ethnographic researcher participates, overtly or covertly, in people’s daily lives for an extended period of time, watching what happens, listening to what is said, asking questions; in fact collecting whatever data are available to throw light on the issues with which he or she is concerned [ 4 ] .

Engagement with a particular social or cultural group is also a distinguishing feature of ethnography, as reflected in Curry et al.’s definition:

Ethnography is a form of field research that seeks to learn the culture of a particular setting or environment. It often relies on participant observation through prolonged field work and may include other qualitative and quantitative methods. The researcher becomes embedded in ongoing relationships with research participants for the purpose of observing and recording talk and behavior. In such cases, the researcher (as opposed to, for instance, surveys or questionnaires) is the primary instrument for data collection and analysis. The researcher seeks to place specific events into a broader, more meaningful context, with a focus on the culture and social interaction of the observed people or groups. Ethnography is particularly valuable in understanding the influence of social and cultural norms on the effectiveness of health interventions [ 5 ] .

Through living and working with communities through extended periods of time, often months or years, ethnographers aim to see and describe the world through the eyes of members of that community. They pay particular attention to the everyday life, narratives of events, social interactions, and the cultural meanings and practices of a community. Ethnographies, unlike some observation studies, are of a social group and are often geographically bound. One exception, however, would be a digital ethnography which explores an online social group. The social group could be a class of school children, a choir, a general practice, or scientists working within a laboratory: the key requirement of the social group is that they share a common culture within the environment in which they are being studied (children in a class may have a different home cultures, but while they are in the class, they share in the culture of the class). The term ‘ethnography’ also refers to the product of the research, as well as the method: it is a distinct piece of writing which summarises an ethnographic study of a particular community or people, usually by an anthropologist. For examples of classic ethnographies, see ‘The Forest People’ [ 6 ] or ‘The Innocent Anthropologist’ [ 7 ], which describe and explain the social worlds of tribes in ‘exotic’ locations for Western audiences. As well as ethnographic monographs, outputs of ethnography can also include images, particularly in the field of visual ethnography [ 8 ].

Ethnographic methods developed within the field of social anthropology in the nineteenth and twentieth centuries. Among the most notable studies, under what became to be known as the ‘British School’ of social anthropology, are those by Bronislaw Malinowski and E. E. Evans-Pritchard [ 9 , 10 ]. These studies involved long periods of intensive fieldwork and participant observation with small tribes of indigenous people and advocated an approach to anthropology which sought to understand the culture from their perspective. Whereas anthropology had traditionally visited discrete communities in remote areas of the globe, the ‘Chicago School’ of sociology and criminology in the mid-twentieth century adapted the commitments of the early social anthropologists, turning attention to social problems within urban settings closer (geographically) to home. For example, in their study of ‘Street Corner Society’ (first published in 1943), Whyte and colleagues produced vivid portraits of city life by recording the social worlds of street gangs [ 11 ]. Two decades later, sociologists from the Chicago School undertook observations of groups of health professionals and healthcare organisations. The most notable of these, perhaps, includes a participant observation of hospital life conducted by Roth in 1963, in which Roth himself was admitted as a patient for tuberculosis (TB) [ 12 ], and a study of the transition of novice medical students to aspiring doctors, which was conducted by Howard Becker and colleagues in 1961 [ 13 ]. More recent commentaries on the use of ethnography in the health field are available [ 14 – 17 ], as well as ethnographies of health-service professionals and organisations [ 18 – 20 ] and settings such as intensive care units [ 21 ]. Studies in medical anthropology have also explored health and illness in different cultures more broadly in terms of how well-being, physical health and mental illness are defined, their meaning, and how symptoms are experienced from the perspectives of people and communities themselves [ 22 ]. However, ethnography has been relatively underused in trials, health psychology, and social science research on health behaviour change [ 23 ].

Ethnography is a rich and detailed methodology and, thus, well suited to the challenges of understanding how complex interventions work; process evaluations of health-behaviour interventions could therefore benefit from adopting ethnographic methods. Process evaluations complement traditional randomised controlled trials (RCTs) by attempting to understand how interventions operate. They illuminate the ‘black box’ of the processes of an intervention, which are not addressed by the classic RCT design that examines the relationship between a limited set of variables (at baseline and outcome and in intervention and control groups). The recent Medical Research Council (MRC) guidance [ 24 ] has conceptualised process evaluation in terms of examining three principal elements: the delivery of the intervention, the mechanisms of impact that occur in participants (how changes in individuals’ health behaviours occur), and contextual factors which interact with both the delivery and receipt of the intervention. The challenge is not just to include these additional elements in a trial of an intervention but to understand the intervention as a whole in terms of how it produces outcomes and how the different elements are causally related to each other. This involves understanding a complex set of processes and events and how they are linked together in causal pathways. These causal pathways articulate the underpinning theory(ies) of the intervention, as the theory of how an intervention works necessarily explains how the intervention causes change. For example, an intervention that uses a food diary to promote weight loss might be based on a theory of self-monitoring of dietary intake and how this affects eating behaviour, as well as a theory of how diaries might be best designed to encourage participants to use them. A description of the causal pathways would explain how the food diary design and delivery influenced participants to engage with the intervention, how the food diaries were actually used and influenced dietary behaviour in participants, whether and how self-monitoring occurred, contextual factors such as family mealtimes, and how these factors contributed to any weight loss in participants (or not). Process evaluations are challenging because the interventions they analyse usually have several layers of complexity due to the challenging problems they are trying to address, the many elements and processes that may occur during the intervention and which are likely to interact with each other, the different levels in which they operate and interact (e.g. intrapersonal, family, and community), and the number of outcomes they may be trying to bring about [ 25 ]. One weakness of quantitative research can be the tendency to fill in gaps in explanation with the researchers’ own assumptions. This occurs because of the distance between the researcher and the data in quantitative research [ 26 ] or because statistical results only show association between two variables, and researchers may attempt to fill in the missing explanation of how the intervention worked with speculation [ 27 ]. Traditional epidemiological methods can establish relationships among variables, but these are not able to fully explain why outcomes occur. As a result, the understanding of processes in an intervention may be flawed or incomplete. Qualitative methods, such as interviews and focus groups, make an important contribution to process evaluations because they can produce rich, detailed information about processes, contexts, and causal pathways in ways that quantitative data cannot. For example, interviews with participants can capture rich narratives describing how individuals experience and react to an intervention and why they may change their behaviour as a result (or not). Qualitative methods also capture the depth and complexity of topics, and are flexible enough to capture unexpected data which may further contribute to the understanding of how interventions operate. All of these aspects of qualitative data are necessary to develop the comprehensive understanding of how interventions operate, which a good process evaluation will aim to produce; furthermore, these aspects contribute to theory-development in the field through explaining causal pathways occurring in interventions. This article argues that ethnography has further strengths over and above the benefits of standard qualitative methods, just outlined here, that could improve process evaluation methods. First, ethnography can be useful in acquiring valid data on intervention processes through collecting data in naturalistic settings and through observing behaviours and events as they occur in real-life settings, rather than through post-hoc interviews and self-report. Second, ethnography collects and analyses data in a way that is inherently embedded within the subjects’ cultures and social worlds and could thus contribute to incorporating contextual factors of the delivery and receipt of interventions. Third, ethnography is an iterative, theory-building approach which is ideally suited to working with and developing theory, another important function of process evaluations that contribute to wider knowledge building within a field. The way in which ethnography is best employed in process evaluations is partly dependent on the type of trial being conducted. In process evaluations for feasibility trials, ethnographic methods could be employed to assess trial methods or to develop the intervention - especially for unfamiliar contexts or hard-to-reach groups - in order to inform a definitive trial. In the ethnography of Garcia et al. [ 28 ], which was an intervention for prophylactic HIV medication for black men who have sex with men (MSM) in the USA, the study was used to investigate what ‘usual care’ was in order to successfully integrate the intervention with ‘usual care’, and also uncovered factors such as mistrust of medical services and medications among participants, which helped inform how the main trial was designed [ 28 ]. In definitive trials, ethnography could be used to develop and build intervention theory, explain why different outcomes occur for different subgroups, or explain recruitment or retention issues. The three ways in which ethnography can be applied to improve process evaluation methodology, and their applicability to feasibility and definitive trials, are discussed below.

Validity of data

The quality of a process evaluation, as in any research, is dependent on the quality and validity of the data collected. Data validity is defined here as the closeness of the relationship between the data collected and reported and the phenomenon being studied. In the case of process evaluation, valid data may be required on the processes of intervention delivery, intervention receipt, mechanisms of impact, intervention contexts, and causal pathways. Threats to data validity in process evaluations arise when data are collected from stakeholders and participants when time has elapsed or when factors such as social desirability bias influence how the data are reported to researchers. Process evaluations often collect data from individuals who are delivering the intervention as well as from the intervention recipients to analyse how interventions are delivered and received in different settings. This may include evaluating intervention fidelity (whether the intervention has been delivered as it was designed to be delivered). Self-report biases may occur from those who deliver interventions because they are reporting their own work and performance and, therefore, may present a positive version of events. Self-report of health behaviours by participants can also be subject to bias; for example, participants may report consuming fewer calories or units of alcohol than they actually did. Data may also be collected about retrospective experiences, often through interviews, over the course of an intervention for example, and participants may not remember their experiences or behaviours accurately. Furthermore, only selected data may be reported to the interviewer by trial participants, depending on how a participant views circumstances; this filtering is inevitable and can be interesting in itself but necessarily limits the data that the researcher has access to and its validity.

Ethnography studies social and behavioural phenomena in naturalistic settings through participant observation, where the researcher is embedded in a social world and, thus, uniquely observes behaviours as they occur in situ. Observation as a key method of ethnography has several benefits. First, data collection is direct rather than being reported at a later time point in interviews or focus groups and is unmediated through participant interpretation or the passage of time. This partially overcomes the problem where practitioners and participants may not remember or report their behaviours in an unbiased way for various reasons, such as practitioners presenting a professional image to researchers or participants constructing their own narratives retrospectively (they may, of course, adjust their behaviours in response to ethnographic observation; this will be discussed below). Second, social groups are observed directly in ordinary, everyday settings of participants; this method is useful for understanding how people delivering or receiving an intervention behave in real life, both in settings where interventions are received and in family or social settings where health behaviours occur or where new behavioural skills are enacted. This can be valuable for hard-to-reach groups, such as substance abusers, or situations such as youth drinking in town centres [ 29 ], as some health behaviours only occur in specific settings. Third, the connections between different data on behaviours, events, contexts, and so on can be observed, rather than being collected atomistically as separate, unrelated items. Knowing these relationships can be helpful, for example Pavis and Cunningham-Burley [ 29 ] sought to understand the risk behaviours of young men hanging around on the streets of a Scottish town. They argue that previous research on this topic tended to focus on the individual risk factors associated with the uptake of behaviours such as smoking, drinking, and illicit drug use, whereas they sought to understand these behaviours within the context of young people’s broader lives and culture. They describe, for example, how cigarette smoking behaviour in young people was related to different types of interaction within social groups, which served to initiate and reinforce social bonds. This study was not a trial, but this type of information could be used for a process evaluation; for the example just outlined above, the researcher could incorporate questions into the interview about social bonds and how these are affected by quit attempts or further observation on how quit attempts interact with the management of social bonds in peer groups. This type of information would enhance the ability of a process evaluation to explain how a smoking intervention operates in conjunction with the social practices of smoking and any effect on trial outcomes.

Ethnography, because it uses observation as a central method, has an advantage in overcoming problems such as self-report that exist in other qualitative studies which only employ interview and/or focus group methods. Nonetheless, disadvantages such as bias exist in all methodologies, including ethnography, and researchers commonly take measures to minimise them. However, an additional benefit of ethnography is that it usually employs multiple methods, and this approach tends to balance out the strengths and weaknesses of each method. Ethnography does this not just by using more than one method but by integrating them in the analysis; this is not always the case in other types of ‘mixed methods’ studies, including trials that incorporate qualitative studies [ 30 ].

The ethnographer collects naturalistic data through ‘participant observation’, which means that the researcher must acquire the status of an insider and become part of a social group to some degree to observe and experience life as an insider would. This makes the method distinct from just ‘observation’. In order to collect data through participant observation, the researcher must first gain entry into a social world and also gain acceptance there. Entry is achieved through good access, which is ultimately dependent on establishing trust and rapport with one’s research subjects. This will ultimately affect what the researcher is told by members of the social group and what the researcher is allowed to observe. For ethnographic research, the establishment of trust can rely heavily on local sponsorship from an influential member of the social group; it can be very difficult for a researcher to approach a group ‘cold’. Often these key members become ‘key informants’, vouchsafing for the ethnographer’s credibility, facilitating introductions, and ultimately steering the ethnographer to interesting insights. Access negotiations, however, are not merely confined to the early stages of the ethnographic project, but rather ethnographers would be wise to continually monitor their on-going relationships with the collective. Key informants may also be ‘gatekeepers’ to the research setting, although other, more formal, gatekeepers (such as head teachers or department managers) may be present, whose approval and support is required in order to collect the data, but they may not be members of the social group being observed. Access can also be facilitated by the fact that naturalistic observation may introduce less disruption to the setting compared to interviews or focus groups (no arrangements have to be made for people to attend interviews or focus groups, and research participants do not have to take time out of their other activities to attend), and therefore be more acceptable to gatekeepers and participants, who may include busy health professionals trying to deliver services [ 31 ].

Once participating in a social world, the ethnographer uses participant observation as a tool to collect data which is occurring naturalistically; this may include reflecting on how they experience phenomena themselves as an ‘insider’, as well as observing others’ behaviour. Interviews will also typically be conducted, and these can be compared to observational data. Ethnographic interviews are likely to have improved validity because they are conducted by an ‘insider’ who understands the social world, and participants also have an awareness of the ethnographer’s familiarity with their social world. Benefits exist to the researcher becoming accepted in terms of the amount and quality of the data the researcher is likely to collect as the researcher gains trust and acceptance and becomes a normalised part of the environment. The quality of interviews can be improved by a better understanding of the researcher and the researcher’s ability to focus questions on the most relevant factors, while gaining trust from the participants to engage in and answer interview questions fully. Wight [ 32 ] and his co-worker spent 3 years living within a working-class, industrial village, and although their participation in the community was initially self-conscious and awkward, they eventually became accepted by most of the community. Acceptance may be challenging if the researcher is perceived as very different from the community they are studying: social distance between the researcher and a group or community can result in lack of trust or not knowing enough about the phenomena under study to ask the right questions. An additional factor in process evaluation is that the researcher may be closely associated with the trial team and the intervention (and therefore as someone who has an investment in whether the intervention is successful) and may have to distance themselves from the main trial for a period in order to become an ‘insider’ in a group or community. Overcoming social distance to acquire the status of an insider may, therefore, take varying degrees of time and commitment to a social group. Because they have become part of the group and are less visible as an outsider (although this process is never complete), the role of the ethnographer as an insider thus reduces the Hawthorne effects of observation. This is similar to passing the ‘dead social scientist test’ [ 33 ], where the researcher reflects on whether the data collected would have been the same if they were dead (i.e. not there). There are challenges in ascertaining the validity of data, even within ethnography, because the researcher will always interrupt the natural setting. However, this effect is usually reduced over time due to the longevity of the presence of the researcher in the field because it is difficult for participants to maintain pretence for a long time [ 34 ]. If the ethnography is only conducted in the intervention arm, it could potentially bias the trial findings because it is quite an intensive method; balancing the tension between data collection and the need for trial findings to be unbiased and have external validity is a common issue for process evaluation and needs to be considered carefully in the research design.

It is clear through these descriptions of participant observation that ethnographers use themselves as a research instrument to a greater degree than in other methodologies; this will have an impact on the research data. Ethnography recognizes the work of interpretation of the ethnographer in producing an account of a culture, both in influencing the research setting (although, as discussed above, this is minimised as much as possible) and in the analysing and writing up of the data. The ethnographer, who usually works in isolation, brings with them their own values, beliefs, and experiences to all stages of the research. It would be impossible, indeed undesirable, for the researcher to be uncontaminated by their own background; instead, the researcher may reflect upon and acknowledge how one’s beliefs and background could influence the study. The activity of being mindful of one’s effect on a setting in how people behave and one’s own personal contribution to the interpretation of data is termed ‘reflexivity’ [ 35 ]. Ethnographers and qualitative researchers use reflexivity to account for their roles in the production of the research data, reporting on this in their findings, and thus make clear to the reader how they have influenced the data. Reflexivity is a practice adopted by ethnographers to manage their position as both an insider and an outsider in order to account for their role in the production of data. As reflexivity is an essential part of the ethnographic process, ethnographic writing tends to provide accounts of the researcher in the research setting and their reactions to it, combining subjective narrative with ‘thick description’ [ 36 ] (discussed below). Since field notes and ethnographies are authored products, they cannot be treated as straight-forward objective representations of the setting: rather, they are selective in what they choose to describe and how it is portrayed. Critical anthropology also emphasises that the output of an ethnography is a combination of the researcher’s perspectives and categories and that of the community they study. While reflexivity as a term or a practice may be somewhat unfamiliar to positivist researchers, this is a good practice in any field of research. Our perspectives and questions shape the data we choose to collect and, therefore, what our findings are, whatever our method or research paradigm. Further, most trialists are aware that trials affect how interventions operate and that their findings will show what an ‘intervention + trial’ produces rather than just the intervention. Being reflexive about this effect of research activity means findings can be interpreted in the light of transparency about the role of the researcher.

Social context

Health-promotion research has increasingly recognised the importance of the social determinants of health, such as socio-economic status [ 37 ]. Attention has also turned to community and legislative environments, such as the availability of local parks or smoking bans, and their influence on attitudes and behaviours. At the intervention level, increasing recognition exists that interventions have an impact on and are affected by the contexts in which they operate; for example, Hawe et al. [ 38 ] argue that interventions are events in a system rather than a closed process. Because the unit of analysis of an ethnography tends to be a particular social world, this methodology addresses social contexts in a holistic way, in which data are related to contextual features and events. Hinder and Greenhalgh [ 39 ] and Schoenberg et al. [ 40 ] explore the role of the family context, employment, and stress and how they influence the management of diabetes in this way. In the Hinder and Greenhalgh study, family members were found to be involved in blood sugar monitoring and dietary management to varying degrees, from providing sugary food in the home environment to putting pressure on the individual with diabetes to maintain good control over their condition [ 39 ]. Schoenberg et al. consider patients’ accounts of stress from difficult family situations or jobs and how the participants attributed behaviours such as poor eating habits to this stress [ 40 ]. This type of understanding of what triggers different types of health management can be critical information for a process evaluation because it enables the researcher to understand the various contextual factors which affect participant behaviour in response to the intervention and ultimately their outcomes.

Ethnography adopts a broad approach to ‘context’ in that it also includes the cultural environment. This is an inherent and distinctive aspect of the ethnographic approach [ 41 ]: the benefits of ethnographic methods over and above qualitative studies, however extensive they may be, are sensitivity to the socio-cultural environments and in their interaction with human sense-making, beliefs, values, and behaviours. This perspective is often addressed through the use of the participant observation method for situations where it would be difficult to uncover cultural issues and social norms to the same extent in individual interview studies. Behaviours are not described in isolation in an ethnography but are accounted for in relation to other aspects of a culture, requiring a particular analytical approach to social life, including an account of the subtle patterns and rules of social behaviour. This may include the details of everyday life and habits, verbal and body language, taboos, humour, dress codes, rules of behaviour, food culture, material and visual culture, rituals, and rites of passage (formal and informal). Behague et al. [ 17 ] describe how ethnographic methods revealed local terms for medical conditions in Brazil, which subsequently improved survey data validity. Additionally, they sought to understand the influence of family pressures, school experiences, and perceived social status on teen pregnancy. In another example, Nelson et al. [ 42 ] found that in an intervention designed to promote open communication between adolescents and parents about sexual health in Latin America, some men viewed open communication about sexual behaviour as being ‘for gays and women’. This type of contextual information may not be immediately apparent in a research site but can be essential for producing a valid and comprehensive account of the acceptability and receipt of an intervention.

Ethnographic research emphasises the need to learn the sub-culture of the people being studied and to interpret the world in the same way as they do. This perspective is best understood by a researcher through a prolonged immersion in the setting or to gain, as Geertz recommends, ‘close in contact with far out lives’ [ 43 ]. Learning a culture does not just mean detailed knowledge of the activities or practices the people engage in but also the significance of the activities or practices. Pavis and Cunningham-Burley describe ‘culture’ as referring to the ‘shared stocks of knowledge, values, ideas and systems of meaning that are held collectively ’ [ 29 ]. This can be a valuable way to understand why participants respond to interventions in the way they do, as their ‘rational behaviour’ from within their context may be quite different from the researcher’s behaviour [ 15 ]. For example, Wight’s [ 32 ] exploration of material lifestyles in an industrial village in central Scotland emphasised the interconnectedness among drinking, masculinity, and employment and the strategies that men developed to retain their self-esteem in a period of recession. Rationality can be locally or culturally specific; this can be true both of professionals and patients [ 15 ]. Schoenberg et al. [ 40 ] highlight the significant differences in the way professionals and patients understood diabetes management in the USA, with patients describing stress within their social context as a significant factor and its impact on self-care, whereas professionals engaged with this factor only minimally. Close contact and deep understanding of the social worlds within which trials are conducted can help focus process evaluations to ask the relevant questions and observe the key processes that are likely to affect the success or failure of the intervention.

Ethnography is also a useful methodology for examining the specificity of particular social contexts. Traditionally, a European anthropologist would have studied a culture in a remote and ‘exotic’ area such as a Pacific island, whereas now, ethnographies might be of groups of teenagers who drink on the streets or users of internet forums. Organisations, such as schools or GP practices, are also social worlds of interest because many interventions are delivered through them (see Table  1 ). Organisations have their own cultures, and professions have distinct practices which affect how an intervention is delivered.

Huby et al. [ 44 ] describe two ethnographic studies which, in order to identify how care could be improved, contrasted patient and provider perspectives on the complexity of networks of care provision, highlighting problems such as poor liaison and gaps in care and how this impacted patient well-being for HIV and stroke patients. This type of analysis could be easily applied to process evaluations which examine implementation processes during trials, partly to inform how the intervention might be rolled out more widely after the trial.

The emphasis of ethnography on social context may be particularly useful during feasibility and pilot trials in which interventions and data collection methods are being developed, especially in cases where social contexts are not well understood; ethnographic data could help researchers understand whether a trial or intervention is likely to work well and be acceptable to participants in a particular type of organisation or setting. Maher et al. [ 45 ] reported on a feasibility study for a Hepatitis C vaccine trial for intravenous drug users, where ethnographic data uncovered the importance of altruism and attitudes towards financial reimbursement in the willingness of users to participate in the trial and also produced useful information for improving communication with participants. This approach could also easily be used for intervention development. For example, Hong et al. [ 46 ] used an ethnographic process evaluation to develop culturally and socially appropriate communication tools and a message diffusion programme for an HIV prevention programme for an ethnic minority group.

Theory building

Process evaluations should be based on the underlying theory of an intervention in order to structure the data collection and analysis around how the intervention is hypothesised to operate [ 24 ]. An RCT is a theory-testing endeavour, where the primary (statistically expressed) outcome indicates whether the hypothesis that the intervention will change behaviour and improve health is proved or disproved. Process evaluations also have a role in further developing theory since they can be used to (deductively) test an underpinning theory about how an intervention works but may also (inductively) refine theory or even build new theory by collecting exploratory, qualitative data. Ethnography is a methodology which works closely with theory and, like other qualitative methods, has the ability to adapt to emerging research questions. Because of this flexibility, it can be used to address new or emerging research questions during a process evaluation and, in this way, can contribute to theory development [ 47 ]. While new theory may emerge or develop during the feasibility stages of studies, and because definitive trials are longer and usually employ a more complex set of mixed methods, more opportunity may exist to develop theory at this stage. Ethnography is characterised by three key features which facilitate theory testing and, in particular, theory building: an alternation between emic and etic perspectives, a flexible and iterative approach to data collection which follows emerging themes, and ‘thick description’.

Ethnographers develop theory by operating with both an insider view as well as an outsider view, defined as ‘emic’ and ‘etic’ perspectives. The emic perspective is the explanation of the social world provided by those within the cultural group; data from this perspective are collected through the ethnographer’s ‘participant observation’ method and by gaining the status and perspective of an insider, described above. The etic perspective is that of the analyst, or the researcher. The ethnographer deals with both perspectives by alternating between the roles of ‘native’ insider and ‘naïve’ outsider. An ethnographic account includes not only the emic description of the beliefs and perspectives of members of a social world but also an etic, a theoretical description which attempts broader and more abstract conclusions about the social world. It is this etic perspective from which an ethnographer builds theory, moving from description to conceptual analysis to theory. The social distance of the ethnographer as an outsider can thus be used to the ethnographer’s advantage, allowing the ethnographer to maximise the anthropological position of strangeness and not to take for granted what a member of the community would consider unremarkable.

Ethnography tends to use different methods iteratively as a study progresses, rather than relying on formal data collection schedules. Ethnographers adopt a flexible approach to research design, responding to ideas as they emerge during a study, and use iterative data collection as an opportunity to validate data and test ideas and hypotheses, for example by triangulating data [ 41 ]. Data are typically recorded through observational field notes, which allow the collection of relatively concrete descriptions of the setting and the activity or whatever is considered suitable and useful. Ethnographers typically then employ other methods, often interviews, and develop further methods over time. For example, Bunce et al. [ 31 ], in an ethnographic process evaluation of a technology-based diabetes intervention in health clinics, used diaries, document analysis, interviews, group interviews, and a survey in their data collection. Emerging topics and themes can be followed up using appropriate methods, in order to build concepts, ideas, and theories. Furthermore, because of the exploratory nature of this methodology, an ethnographic study can uncover and follow up novel data in order to build theory. Unexpected data might include data available from a source in the field that had not been anticipated (for example, a voluntary organisation keeping records of client feedback that the researcher was not originally aware of). Alternatively, data might be unexpected in that the data collected might look very different than anticipated: if a study was exploring an intervention to promote walking to work and the main study was concentrating on aspects such as road layouts or pedestrian crossings, the ethnographic data might reveal that there was a history of crime in the locality or a culture where travelling by car denoted high social status that were the primary reasons for not walking to work. Although unexpected data can create resource or time-tabling problems for a study if it takes an unpredictable turn, finding unexpected data can be one of the most useful and interesting parts of a study, as it produces new knowledge which may confirm, build, expand, or improve on existing theories in some way. It challenges researchers’ assumptions and means findings could be a useful departure from ‘received wisdom’ in the field towards more valid theory.

Once data have been collected in this way, ethnography then builds theory through ‘thick description’, one of the key terms associated with ethnography [ 36 ]. According to Geertz, ethnographers must present a report which is composed not only of facts but also offers commentary, interpretation, and meta-interpretations. By contrast a ‘thin description’ would be a superficial, descriptive, and factual account lacking interpretation and failing to explore the underlying meanings, intentions, or circumstances of actions. Thus, thick description is not simply a matter of amassing and presenting relevant detail, but it is the interpretative characteristic, rather than the detail, that makes the description thick [ 48 ] (see Table  2 ). For a process evaluation, a thick description could be employed to account for the processes occurring in an intervention – such as the patient-provider relationship, acceptability, participant agency and response to the intervention – which help explain how outcomes are achieved [ 40 , 49 , 50 ].

Limitations

The ways in which ethnography can contribute to process evaluations have been outlined here, but as with any method, ethnography also has limitations. The first characteristic of ethnography that might strike a researcher (especially one writing a funding application) is that ethnography can be time-consuming and, therefore, expensive. The researcher has to gain access and then observe a social world with a certain degree of intensity and over a period of time. This has obvious implications for resources for a trial; often, not every site can be visited by the researcher, and therefore, decisions have to be made about how to sample sites. However, fieldwork for a process evaluation does not have to be as long as traditional ethnographies; applied ethnography is typically shorter [ 14 ], and ethnographic methods can be adapted for a study. Shorter ethnographies could be conducted in order to produce timely findings, for example, to influence the design of a definitive trial [ 28 ] or to inform policy makers about important contextual factors for implementation at the end of a trial. Even so, ethnography will still be a resource-intensive method because of the researcher time required. However, thorough process evaluations which collect valid data are important for understanding how interventions work and for avoiding expensive failures of theory and interventions in the future; resource justifications can be made on this basis. Furthermore, while a longer-term iterative ethnography might be a more expensive study, this may be cheaper overall than a study that produces limited findings and then requires a second, follow-up study to explore issues further.

Second, because ethnography is usually an in-depth study of one social world, limitations exist to its generalizability. However, ethnographic research sites are often chosen for their ability to generate interesting theoretical insights or information about a sub-group, rather than necessarily being chosen for their typicality. Alternatively, the theory generated through an in-depth study may have wider applicability, and this kind of research, therefore, often has ‘theoretical generalisability’ [ 51 ]. An in-depth study of a phenomenon, through its close study and uncovering of processes that other methods might miss, produces theory that can then be investigated in other cases to explore how universal that phenomenon is. In any case, a process evaluation within an RCT will also have limited generalizability even if it is conducted across several sites because it will necessarily take place in some contexts or for some populations rather than others. RCTs themselves have limited generalisability because they are conducted within a limited population and at a particular time point. Therefore adopting ethnographic methods for a process evaluation will not make a trial less generalizable than it already was, unless it focuses on a sub-sample or case within the trial population.

Third, depending on the setting, ethnographic methods may produce additional risks for the researcher because field dangers may include physical violence, emotional strain, and danger arising from ‘guilty knowledge’ of illegal activities [ 52 ]. This could occur during observations of binge drinking behaviour in city centres, for example. Ethnography faces the same risks and challenges as qualitative research; in ethnography, however, researchers are often slightly more likely to place themselves in risky situations because it can be more difficult to anticipate the nature of the fieldwork in comparison to an interview study, partly because fieldwork can take place in less structured or formal environments. Bloor et al. [ 53 ] highlight risks for researchers in the field, particularly for ethnographers exploring dangerous settings. They point out that risks are often left to individuals to manage, rather than institutional structures such as ethics committees. They discuss institutional ways to mitigate risk, including risk assessment, researcher management, resources for safety, and insurance. These can be included in protocols and SOPs for process evaluations, as well as in institutional policies.

A fourth issue is not so much a limitation as an additional consideration: that is, the ethical issues which arise from the ‘insider/outsider’ role of the ethnographer. One could argue that ethnographers have a tendency to deviate from the formal rules of ethics that have been widely accepted by other social science researchers [ 54 ]. For example, in order to maintain fieldwork relationships, ethnographers are likely to present themselves during access negotiations and data collection as more sympathetic to the behaviours, beliefs, and social values of the community than they might actually be. A tendency may exist for ethnographers to partly conceal their real motives for conducting the research in order to ensure that members of the community do not adapt their behaviours and beliefs. This can be a particular issue if the research focuses on clandestine activities such as drug use. In practice, however, ethnographies typically portray sensitive accounts of social worlds with sympathy because they communicate a groups’ insider perspective. In addition, community members may not fully understand or remember the details of the ethnographic research and maybe be unaware at times that the researcher is collecting data; in our experience participants tend to forget the details of methods that have been explained to them and also tend to associate ‘data collection’ or ‘research’ with questionnaires or interviews rather than observation. This has implications for informed consent, and the regular negotiation of ethics, rather than a contractual agreement at the outset of the research, may be more appropriate in order to manage this [ 55 ].

Finally, a more pragmatic limitation of ethnography is that the flexible, iterative data collection and analysis process of this methodology is at odds with what funders and ethics boards usually require in the planning stages of a study [ 56 ]. Whilst a flexible, iterative, and exploratory approach is a strength of ethnography, it ultimately makes it more challenging for ethnographic research to be funded and approved. Funding bodies and ethics committees require detailed research plans and schedules, including what the fieldwork will involve, how many interviews will be conducted, where observation will occur, what type of data will be collected, and what the focus of data collection will be. Some decisions about data collection may occur later on in an ethnography, rather than being planned in advance. Similarly, ethics may be agreed on with the community on an ongoing basis, as noted above; this does not fit well with the contractual model of consent usually used in studies such as RCTs and approved by ethics committees in advance of the study. Taken together, these limitations of ethnography and the responses they require highlight how distinctive ethnography is as a method and how resources, research planning, safety, and ethics all have to be considered within a different framework from standard RCTs.

Conclusions

Process evaluation is a developing area of complex interventions research. Continued recommendations to conduct process evaluations alongside RCTs [ 2 , 24 , 25 ] have meant that new methodologies are required to address the challenges involved in explaining how interventions work and trial outcomes are achieved. Ethnography is ideally suited to the challenge of process evaluation because it produces data with high validity, inherently incorporates social contexts, and works closely with theory to develop an understanding of how interventions work. Trials being conducted in novel or complex social contexts for hard-to-reach groups or in cases where data validity or theory-building are key issues should consider adopting ethnographic methods in the process evaluation. The strength of incorporating social contexts may be particularly useful for process evaluations in feasibility trials, whereas ethnography’s strength in theory building may be especially relevant for definitive trials. However, ethnography is a relatively unfamiliar method in the world of RCTs and requires a distinctive approach to research design and quality criteria (such as the appropriate use of reflexivity), which may be unfamiliar to trialists more used to quantitative research perspectives. It also requires, as with process evaluation more generally, adaptation to the research question, type of trial, and level of resources available. A consideration of when findings are produced and how they inform future studies depends on factors such as whether the process evaluation is for a feasibility or definitive trial; this is a broader issue affecting the use of qualitative methods alongside trials [ 57 ].

This article has taken a largely pragmatic perspective in demonstrating ways in which ethnographic methods could be helpful in process-evaluation methodology. Where ethnography is used in a very constructivist way, the analysis may be difficult to combine with an RCT’s findings if the trial’s overall methodological approach is towards positivist approaches to data. However, critical realist perspectives take into account the fact that data are always mediated by interpretations of the participants (and researchers), while still attempting to produce an account of how an intervention works that could be considered an approximate account of the ‘real’. Most researchers working in trials and process evaluation fields, in our experience, are relatively pragmatic in their approaches to the qualitative/quantitative debate and also accept realist approaches, as expounded in the work of Ray Pawson for example [ 27 ]. Reflexivity, as discussed above, can be useful in managing the tension between acknowledging the interpretation that goes on in producing data and in trying to present a valid account of how an intervention works in a given context.

As well as the benefits that ethnography brings in terms of a methodology, the value of ethnography as a product should also be considered. This is normally an account of a social world and an ethnographer’s time spent there. It usually has a narrative element, which can be an accessible and engaging way to draw people into reading about the research. Its ‘thick description’ of a social world can also be very interesting, as it highlights distinct features of interest, illuminates different personalities, and shows how a social world fits together. This has implications for the impact of research, since the human interest in a story or a social world can help the research team communicate a rich account of their findings to an audience.

Abbreviations

Medical Research Council

randomised controlled trial

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Research Article

An Ethnographic Study of the Social Context of Migrant Health in the United States

Affiliations Department of Anthropology, History, and Social Medicine, School of Medicine, University of California San Francisco, San Francisco, California, United States of America , Department of Anthropology, University of California, Berkeley, California, United States of America

• Seth M Holmes

• Published: October 24, 2006
• https://doi.org/10.1371/journal.pmed.0030448
• Reader Comments

Migrant workers in the United States have extremely poor health. This paper aims to identify ways in which the social context of migrant farm workers affects their health and health care.

Methods and Findings

This qualitative study employs participant observation and interviews on farms and in clinics throughout 15 months of migration with a group of indigenous Triqui Mexicans in the western US and Mexico. Study participants include more than 130 farm workers and 30 clinicians. Data are analyzed utilizing grounded theory, accompanied by theories of structural violence, symbolic violence, and the clinical gaze. The study reveals that farm working and housing conditions are organized according to ethnicity and citizenship. This hierarchy determines health disparities, with undocumented indigenous Mexicans having the worst health. Yet, each group is understood to deserve its place in the hierarchy, migrant farm workers often being blamed for their own sicknesses.

Conclusions

Structural racism and anti-immigrant practices determine the poor working conditions, living conditions, and health of migrant workers. Subtle racism serves to reduce awareness of this social context for all involved, including clinicians. The paper concludes with strategies toward improving migrant health in four areas: health disparities research, clinical interactions with migrant laborers, medical education, and policy making.

Citation: Holmes SM (2006) An Ethnographic Study of the Social Context of Migrant Health in the United States. PLoS Med 3(10): e448. https://doi.org/10.1371/journal.pmed.0030448

Academic Editor: Paramjit Gill, University of Birmingham, United Kingdom

Received: April 10, 2006; Accepted: September 15, 2006; Published: October 24, 2006

Copyright: © 2006 Seth M. Holmes. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Funding: This research was funded by the UCSF Medical Scientist Training Program, the University of California Institute for Mexico and the United States, the UCSF Center for Reproductive Health Research and Policy, the UCSF Graduate Division, and the Mustard Seed Foundation. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Competing interests: The author was one of the guest editors of the social medicine theme issue in which this article appears; however, he played no part in the review of this manuscript. No other competing interests exist.

Editors' Summary

Background..

For centuries, recent immigrants have experienced poorer living and working conditions than more established inhabitants, which in turn means that the health of immigrants is often worse. Immigrants often take on the very lowest-paid jobs. One might suppose that in more recent years the increasing prosperity of countries such as the United States and those of western Europe would have reversed this trend. But as recently as 2005 the New York–based Human Rights Watch published a report entitled “Blood, Sweat and Fear,” which documented appalling conditions for the mostly immigrant workers in the US meat and poultry industry. In the UK also, legislation has recently been introduced to try to regulate the activity of “gang masters” who control large groups of immigrant workers. This legislation was triggered by public horror about the deaths in 2004 of 21 immigrant cockle pickers who drowned in Morecambe Bay in Lancashire. A group of workers at particular risk of poor conditions because of the seasonal and uncertain patterns of work are those who work as farm laborers.

Why Was This Study Done?

There are relatively few studies that have looked in detail at the pattern of health problems among migrant farm workers in the US. Understanding the working conditions of these workers would be of help in understanding more about their health problems and, in particular, how to prevent them. One problem is that few of these workers are seen in the usual health-care settings; few of them have health insurance.

What Did the Researchers Do and Find?

The paper's author spent 15 months with a group of indigenous Triqui Mexicans as they migrated around the western US and Mexico working on farms. He used a type of research called qualitative research, which involved observing and interviewing more than 130 farm workers and 30 health workers on farms and in clinics. He found that working and housing conditions were organized according to ethnicity and citizenship, and that there was an unofficial hierarchy, with undocumented indigenous Mexicans having the worst health. Even worse, migrant farm workers were often blamed for their sicknesses by those in charge of them or those from whom they sought help.

What Do These Findings Mean?

The author concludes that “structural racism and anti-immigrant practices determine the poor working conditions, living conditions, and health of migrant workers.” Furthermore, it seems that “subtle” racism among all involved, including clinicians, reduces awareness and perhaps even allows tacit acceptance of these patterns of health. It seems that targets for specific health interventions for these workers will need to be closely integrated with a broader approach to improving migrant health including medical education and policymaking.

Additional Information.

Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.0030448 .

• Migration Dialogue regularly consolidates news related to immigration around the world
• Global Exchange has information related to fair trade, CAFTA, and other related current events
• United Farm Workers has information related to working conditions of migrant laborers
• PCUN has information related to migrant laborers in the Pacific Northwest
• The Border Action Network has information related to the US-Mexico border
• Border Links provides education and experiential learning related to the US-Mexico Border
• Tierra Nueva and the Peoples Seminary provide social services for migrant laborers in the Pacific Northwest and education related to the lives of migrant workers
• The Pesticide Action Network of North America provides information related to pesticides and health
• The Pesticide Education Center provides detailed lists of the contents of pesticides and their health effects
• The Center for Comparative Immigration Studies conducts research and education projects related to international migration
• Human Rights Watch publishes and campaigns on many issues, including conditions for workers, such as that on the US meat-packing industry
• European Research Centre on Migration and Ethnic Relations has a range of information concerning migrants

Introduction

Labor migration is a significant phenomenon throughout the world, with high economic, political, medical, and human stakes. The UN Population Division estimates that there are 175 million migrants in the world, 46% more than a decade ago [ 1 ]. Worldwide, the majority of migrant laborers are of a minority ethnicity in the country in which they work, most live in poverty and suffer poor health, and significant numbers are undocumented.

What is often framed as “the migrant problem” [ 2 , 3 ] in the US has received great political, journalistic, and medical attention in the past few years. Recent research estimates that there are 293 million residents in the US, 36 million of whom are foreign-born and 10.3 million of whom are unauthorized [ 4 , 5 ]. According to the 2000 US Census, there were 9.2 million Mexican-born US residents, including 2.3 million naturalized US citizens, 2.1 authorized immigrants, and 4.8 undocumented immigrants [ 6 ]. It is estimated that there are 1 million indigenous Mexicans from the state of Oaxaca in the US, mostly Mixtec, Zapotec, and Triqui people [ 7 ]. Approximately 95% of the agricultural workers in the US were born in Mexico [ 8 ] and 52% are undocumented [ 9 ]. The average age of agricultural workers is 29 years, with very few older than 60 years [ 10 , 11 ] and the vast majority of these individuals and families live below the poverty line [ 9 , 11 , 12 ].

Most researchers agree that inequalities in the global market make up the primary driving force of labor migration patterns (e.g., [ 12 ]). Mexico's average minimum wage is US$4.12 per day and varies by region, with the lowest minimum wage in southern Mexico, from which come most indigenous Mexican migrants to the US. In contrast, the US federal minimum wage is $5.15 per hour, while it is $6.75 in California and $7.15 in Washington state. Regardless of the lack of parity in economic power between Mexico and the US, the North American Free Trade Agreement (NAFTA) deregulated all agricultural trade in 2003 except for corn and dairy products, which will be unprotected in 2008 [ 13 ]. The Mexican government complains that since NAFTA's initial implementation in 1994, the US has raised farm subsidies by 300% [ 13 ]. Throughout the 1990s, Mexico, on the other hand, has reduced financial supports for corn producers, millions of whom are indigenous peasants for whom corn cultivation is the primary source of income [ 13 ]. Various Mexican organizations are pressing the Mexican government to renegotiate NAFTA so that more farm owners and workers will not be forced by poverty to emigrate for wage labor [ 13 ]. In various rural parts of Mexico, rebel groups have risen up, some armed and some not, to demand a change to the economic marginalization and geographic displacement justified by the rhetoric of “development” and “free trade” (e.g., [ 14 , 15 ]).

Mexican laborers, often called “illegal aliens” in the US, are often victims of negative prejudice and violence, including murders by civilian vigilante squads, so-called “beaner raids” by off-duty Marines, BB gun shootings by white American youth, deportations of sick workers by company owners under the guise of taking them to the hospital, the paying of entire farm labor crews in wine and illicit drugs, and pesticide poisoning by company crop dusters (for specific examples, see [ 2 , 4 , 16 – 19 ]). They are blamed for everything from unemployment rates to state budget deficits [ 20 ] in efforts to pass bills (such as California's “Save Our State” initiative in the 1990s, a similar 2005 initiative in Arizona, and various US Congress bills in 2006) that bar undocumented immigrants from public services, including health care. In such political debates about immigrants, it is rarely acknowledged that these laborers are actively recruited by US employers to take jobs that US citizens most often are unwilling to fill, and that the laborers pay sales taxes as well as the federal, state, and local taxes taken out of their paychecks [ 5 , 21 – 24 ].

In 1994, the US Border Patrol launched Operation Gatekeeper to deter migrants from crossing the southern border by utilizing more agents, more barriers, and more technology. According to critics, this has simply moved the location of crossings to more deadly areas that are less visible to border area residents [ 25 ]. Already by August, 2005 had become the deadliest year on record, with 385 recorded border-crossing deaths, surpassing the previous record of 383 set in 2000 [ 25 ]. In addition, undocumented immigrants report that coyote (unauthorized border-crossing guide from Mexico to the US) fees have risen to approximately US$2,000. Nonetheless, the “new nativism” [ 26 , 27 ] active in the US calls for further militarization of the border. During the summer of 2005, more than 1,000 private volunteer militiamen, calling themselves “Minutemen,” began patrolling 23 miles of the Arizona border [ 28 ]. California governor Arnold Schwarzenegger commended the Minutemen for doing a “terrific job” [ 25 ], while others consider it dangerous and illegal vigilantism [ 29 ].

Previous medical and public health research shows that migrant farm workers have significantly worse health statistics than other populations. Such statistics are somewhat unreliable, due to the difficulty of studying a largely invisible population. Estimates of the migrant farm laborer population in the US range from 750,000 to 12 million, though most approach 10 million [ 11 ]. In addition, most morbidity and mortality data are skewed lower due to undocumented workers' fear of reporting health problems, poor enforcement of labor and health policies in agriculture, as well as the fact that many Latin American migrant laborers return to their home countries as they age or become disabled, which leads to a “healthy worker bias” [ 30 ]. Regardless of these issues, previous research shows that health disparities related to migrant farm workers fall into the areas of ethnicity, citizenship, and social class. According to recent research, Latino children have twice the death and hospitalization rates from pedestrian injury than do white children in the US, and Latino adults have lower rates of preventive medicine screening [ 8 ]. A recent Institute of Medicine report indicates that all ethnic minorities receive definitively lower-quality health care in the US [ 31 ].

In addition, several studies show that the health status of immigrants declines with increasing time in the US. Such health markers as obesity, serum cholesterol, tobacco smoking, alcohol use, illicit drug use, mental illness, suicide, and death by homicide increase between first- and second-generation Mexican immigrants in the US [ 8 , 30 ]. The nutritional value of immigrants' diets also decreases significantly during the first year in the US [ 30 ]. Undocumented status further increases allostatic load due to, among other things, crossing the “most violent border in the world between two countries not at war with one another” as well as ongoing fear of immigration and other authorities [ 7 ].

Beyond ethnicity and immigration status, the class position of Mexican migrant farm workers is also associated with their decreased health status. Agricultural work has a high fatality rate, with 21.3 deaths per 100,000 workers per year, compared with the overall worker rate of 3.9 [ 10 ]. In addition, agricultural workers have increased rates of nonfatal injuries, chronic pain, heart disease, many cancers, and chronic symptoms associated with pesticide exposure [ 10 ]. There is also an increased risk of stillbirth and of congenital birth defects in children born near farms [ 10 , 32 ]. To further specify class position, migrant and seasonal farm workers suffer the poorest health status within the agriculture industry. Migrant and seasonal workers have increased rates of many chronic conditions, such as HIV infection, malnutrition, anemia, hypertension, diabetes, chronic dermatitis, fatigue, headaches, sleep disturbances, anxiety, memory problems, sterility, blood disorders, dental problems, and abnormalities in liver and kidney function [ 11 ]. This population has an increased incidence of acute sicknesses such as urinary tract and kidney infections, lung infections, heat stroke, anthrax, ascariasis, encephalitis, leptospirosis, rabies, salmonellosis, tetanus, and coccidioidomycosis [ 32 , 33 ]. Tuberculosis prevalence is six times more common in this population than in the general US population [ 30 ]. Finally, children of migrant farm workers show high rates of malnutrition, vision problems, dental problems, anemia, and excess blood lead levels [ 32 ].

Despite their worse health status and a correlated need for more health and social services, migrant farm workers face many obstacles to access such services. Farm workers are entirely or partially excluded from worker's compensation benefits in all but 15 states [ 33 ]. The Fair Labor Standards Act of 1938 guaranteed minimum wage, time-and-a-half wage for overtime, and restricted child labor, but this did not apply to farm workers. Amendments in 1966 ostensibly extended eligibility to farm workers, but disqualified the majority by excluding such categories of workers as those on small farms and those paid piece wages. The majority of farm workers are also excluded by the Social Security Act and its later amendments from benefits related to unemployment. In addition, even though migrant housing conditions are addressed in Housing Act of 1949 and Occupational Safety and Health Act of 1970, living conditions in labor camps continue to be appalling. Finally, farm workers were denied the right to collective bargaining under Wagner Act of 1935, which has changed in only a very few states. Furthermore, even existing provisions for farm workers are regularly violated.

Only 5% of migrant farm workers have health insurance, contrasted with 84% of US residents overall [ 30 , 34 ]. Migrant laborers are less likely than other groups to obtain preventive care, with 27% never receiving a routine physical exam, 25% never having a dental check-up, and 43% never receiving an eye exam [ 11 ]. Although there is a federal Migrant Health Program funding migrant clinics, it is estimated that this program serves only 13% of the intended population [ 11 ]. Finally, undocumented status and the inter-state migratory nature of their lives means that less than one-third of migrant women qualify for Medicaid, despite living well below the poverty line [ 31 ]. Many migrant workers in the US go through many hardships to return to Mexico for health care [ 31 ], and they cite economic, cultural, and linguistic reasons for this choice.

The social science research cited above indicates that Mexican migrant workers in the US are the focus of many forms of prejudice and violence. The health research brings to light significant health disparities related to undocumented Mexican migrant workers, specifically along the lines of ethnicity, citizenship, and social class. However, it is not yet understood how prejudice—specifically, institutional racism and anti-immigrant prejudice—might influence such health disparities. There has been very little research related to the ethnic make-up of migrant workers in general, especially with relation to indigenous Mexican migrants. This study aims to fill these gaps by identifying ways in which the social context of indigenous, undocumented migrant farm workers' affects their health status, well-being, and medical care.

This research investigates the social forces in the web of causation of ill health among migrant workers in the US by reporting in-depth qualitative research data and analysis from an extended ethnographic case study with undocumented, indigenous Mexican migrant laborers in the western US and Mexico. In addition, the investigator analyzed ways in which the social origins of sickness are obscured by an individualizing medical gaze as well as societal normalizing notions of essential ethnic difference.

In order to address these research questions, this study employs the classic anthropological technique of participant observation [ 35 ], supplemented by tape-recorded, semi-structured, in-depth interviews in farms as well as in clinics and hospitals frequented by migrant farm workers. Because the study question relates to subtle forms of prejudice, assumption, and meaning that are often difficult to assess with quantitative methods or interviews alone, this study makes use of the above standard qualitative research methods utilized over the long term. Anthropological methods, such as those described below in the case of migrant health, are critical to investigating social disparities in health in vivo without simplifying the complex reality in which they are embedded. Specifically, participant observation involves long-term immersion in a particular social and cultural context. The researcher participates in everyday life during an extended period of time, while observing interactions and listening to conversations in order to identify significant practices, political economic forces, and cultural concepts. The investigator regularly records events and conversations in detailed field notes. While this methodology may include data from interviews and surveys, it differs significantly from many other methods of research in that it is performed and analyzed within the situational knowledge provided by long-term participation, observation, and relationship.

Tape-recorded interviews were conducted with five to ten members of each of the groups of primary study participants outlined in Table 1 , except for vigilante members and Border Patrol officers (who refused to be recorded but agreed to be interviewed and for notes to be taken). The researcher is fluent in English and Spanish and speaks and understands limited Triqui Alto. Interviews were conducted by the investigator in English or Spanish when either of these was fluently spoken and understood by the participant. Given the extreme lack of Triqui translators, the investigator utilized the translation help of other primary study participants in order to interview the few participants who spoke only Triqui Alto.

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Primary Study Participants

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The participant sample was selected in order to balance the need for the organic development of relationships within participant observation and the desire for a representative sample. The selection of participants on the Tanaka Farm will serve as an example. First, this farm was selected for the study because it contains populations that represent the ethnic and citizenship make-up of much of the agricultural workforce in the US [ 36 – 38 ], thus increasing the generalizability of the findings. Second, the investigator was able to build rapport with the farm management due to his prior acquaintance with several area residents.. The sample of participants was selected to represent each of the primary labor, ethnicity, and citizenship positions on the farm. Within each of these positions, the individuals whom the investigator was able to observe in multiple meetings were consented and included as study participants. The general principles of choosing participants from each of the primary ethnicity and citizenship categories whom the investigator was then able to observe in multiple temporal and social contexts were repeated throughout the multi-sited field research.

The research was conducted along the lines of “follow the people” multi-sited fieldwork [ 39 ] full-time for 15 months throughout a migration circuit with a group of indigenous Triqui Mexicans starting in an agricultural community in Washington state, moving to central California, next moving to their hometown in the mountains of Oaxaca, migrating across the border into Arizona, and finally returning to Washington state (see Figure 1 ). Six months were spent living in a migrant camp, picking berries, as well as observing and interviewing in migrant clinics and hospitals in Washington state. Four months were spent living with Triqui migrant workers in a slum apartment, pruning vineyards, as well as observing and interviewing in migrant clinics and hospitals in central California. Four months were spent living with a family, planting and harvesting corn, and observing and interviewing staff in the local medical clinic in a village in the mountains of Oaxaca. One month was spent hiking through the desert, meeting with and interviewing Border Patrol agents, local residents, activists, and vigilante members in Arizona ( Figures 1 and 2 ).

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This map shows the route of migration field research followed by the anthropologist, from the Skagit Valley of Washington state to the central Valley of California, the mountains of Oaxaca, Mexico, the Arizona borderlands, and then back to central California and Washington state.

(Illustration: Natalie Davis)

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More than 3,000 pages of field notes from observations and experiences, oral histories and transcribed interviews, as well as photographs, surveys, clinical medical charts, newspaper and other media clips comprise the data analyzed in this study. In this project, data were analyzed according to the primary foci of living and working conditions, ethnic relations, immigration status, health status, and medical care, as well as prejudices and stereotypes.

A general overview of the initial stages of data analysis is provided by the model of grounded theory [ 40 ], which can be particularly useful in participant-observation studies. The most intensive phase in each research site can be understood as the scientific method of hypothesis testing via observation done in an iterative process over the longue durée. Frequently during fieldwork, the primary investigator systematically analyzed and coded field notes and interviews in order to test the primary hypotheses of the study and develop more precise questions for the next rounds of interviews. This method allows for ongoing contextual development of more and more precise hypothesis testing. Fieldwork notes and transcribed interviews were coded utilizing Atlas.ti software. The analysis process includes coding of data through cycles of increasing precision. The data with a single code were compiled and analyzed for their characteristics and meanings. Then, data were coded axially, focusing on connections among categories. Data analysis also entailed a research verification technique called triangulation. This involves collecting several kinds of data from the same sources over time as well as from independent sources in order to verify the validity of research findings and to diminish distortion due to self-report alone.

This analysis was performed with cross-checking by 15 scholars in the fields of cultural anthropology, medical anthropology, and medical sociology. During the analysis and writing phases of the study, meetings were scheduled with seven senior scholars individually and as a group with the eight researchers in the Violence in the Americas Writing Group (see Acknowledgements section) to discuss developing analyses of field notes and interview transcriptions that had been sent to them earlier. Consensus regarding analysis was achieved through discussion of the analyses—including themes—arrived at separately by each of the individuals mentioned above. In addition, several study participants were invited to discuss the conclusions of this project. The invitation of critiques and analyses by study participants is an increasingly common practice in cultural and medical anthropology that works to increase the validity of findings by minimizing the a priori bias of the outsider. The investigator, however, holds the final responsibility for the conclusions presented in this article.

The theoretical framework of this study falls within the subfield of critically interpretive medical anthropology [ 41 , 42 ]. This subfield of medical anthropology seeks to remain close to the origins of cultural and medical anthropology in the US by focusing on the interpretation of local meanings and experiences while linking these interpretations with an analysis of larger social, political, and economic forces. This framework is especially helpful in answering research questions that attempt to understand the inter-relationships between the micro illness experiences of individuals and the macro social and cultural forces influencing those experiences. The specific concepts within this field that will be employed in this paper will be described in the Results and Discussion sections. This study was approved by the Committee on Human Research at the University of California San Francisco. The identity and research aims of the investigator were made clear throughout the fieldwork. Names and identities of study participants have been changed without altering the nature of the data. Consent for photographs was obtained from all participants in the manner suggested by the Committee on Human Research at the University of California San Francisco.

Ethnicity and Citizenship Hierarchies in Farm Labor

The Tanaka Farm, in which several months of fieldwork were performed in Washington state, serves as an extended case study in order to understand the effects of prejudice on the health of farm workers. The first, general phase of fieldwork yielded the contextual data [ 43 ] that will be presented in this section.

The Tanaka Farm is a relatively small family farm, with executives focused on growing the business for future generations and keeping agricultural land in Washington state. This farm employs more than 400 workers at the peak of picking season and approximately 50 during the rest of the year. On a practical and explicit level, employees on the farm plant, harvest, and process berries, supporting the published goals of the company. On another level, the structure of farm work inheres a hierarchy reflecting the inequalities in US society at large—specifically, those organized around ethnicity and citizenship. Duties, privileges, as well as exposures to weather, pesticides, and other dangers differ from the top to the bottom of this hierarchy (see Figure 3 ).

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The broad contours of the structure of labor on the Tanaka Farm follow. The top executives work seated behind desks in private offices and live in their own houses, some with panoramic views. All are white or Asian-American. The administrative assistants who work seated at desks in public spaces as well as the teenagers who stand outside checking weights and time cards live in relatively simple houses near the farm. They are almost entirely white, with a few US Latinos. The other workers live in one of three labor camps. Each labor camp is made up of shacks, the average of which is 10 feet by 15 feet with one or two mattresses, one small refrigerator, two camping-style gas stoves, one table with a bench, and a small sink with one hose each of hot and cold water. The first camp holds almost 50 people and is located 100 feet from the road. Each shack has heating, insulation, and wooden roofs under the tin metal sheets. Here live the field bosses who walk outside supervising the pickers, almost entirely Latino US citizens, along with one Mixteco from the state of Oaxaca in Mexico. The second camp holds approximately 100 people and is located a few hundred feet from the road. Most units here have a wooden roof under the tin metal sheets, though none have heating or insulation. Here live primarily apple and raspberry pickers, as well as several strawberry pickers. The residents of this camp are made up almost entirely of undocumented mestizo Mexicans, along with several Mixtecos and a few Triquis, also from Oaxaca. The third camp, located several miles from the farm headquarters down a back road, holds 250 people. The shacks here have tin roofs without wood, heating, or insulation. Here live the majority of the strawberry pickers, primarily Triqui indigenous Mexicans, as well as several Mixtecos and two indigenous people from the Mexican state of Chiapas ( Figure 4 ).

Each of the Tanaka Farm's labor camp units, called “cabins” by farm executives, is split in half, with each side housing one family.

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The ethnic and citizenship hierarchy seen here—white and Asian-American US citizen, Latino US citizen or resident, undocumented mestizo Mexican, and undocumented indigenous Mexican—is common in North American farming [ 36 – 38 , 44 ]. The relative status of Triqui people below Mixtecos can be understood as a difference in perceived indigeneity. Many farm workers and managers indicated in interviews that they believed that the Triqui were more “purely indigenous,” “more simple,” and “less civilized” than other groups.

In many ways—ethnicity, citizenship, social class—the investigator did not take the appropriate position in the labor hierarchy. In order to answer the research questions, the anthropologist placed himself in the housing and occupations of the Triqui undocumented immigrants. This, then, added experiential data beyond the observations and interviews. The farm executives treated the investigator as someone out of place, giving him special permission to keep his job and shack even though he was never able to pick the minimum weight. They joked and talked with him as he picked, treating him like a respected form of entertainment. On the other hand, the Oaxacan berry pickers treated him with a mixture of respect and suspicion. Many wondered why there was a gabacho chakuh (bald, white American) picking berries. Many suggested that the investigator might be a spy for the police, the border patrol, or the US government. Others stated that he might be a drug smuggler looking for a good cover ( Figure 5 ).

The anthropologist with Triqui migrant workers in Washington state.

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After sharing a meal in the labor camp, a Triqui man named Samuel made a statement representative of many interactions between the berry pickers and the investigator. He mused, “Right now you and I are the same; we are poor. But, later you will be rich and live in a luxury house (casa de lujo) .” The anthropologist explained that he did not want a luxury house, but rather a small, simple house. Samuel clarified, “But you will have a bathroom on the inside, right?”

Health Disparities and Health Care

The first question in the hypothesis-testing phase of research follows: How does the above ethnic and citizenship hierarchy in agricultural labor relate to health status and health care? With time and observation, it became clear that the complex of ethnicity, citizenship, labor, and housing maps onto a hierarchy of health status and suffering. The further down the ladder from Euro-American to indigenous Mexican one is positioned, the less control over time one has, the more degrading treatment by supervisors one receives, the more physically taxing one's work is, and the more exposed one's body is to weather and pesticides. As enumerated in the Introduction section, disparities in many areas of health in the US fall along this hierarchy of ethnicity, labor, and citizenship.

The Triqui people inhabit the bottom rung of the pecking order on the Tanaka Farm. The relationship between their position in the farm labor structure and their health constitutes a representative case in point. As described above, the Triqui berry pickers live in the coldest, wettest shacks. They hold the most stressful, humiliating, as well as physically strenuous and dangerous jobs picking strawberries. Occupying the bottom of the labor hierarchy, Triqui strawberry pickers bear an unequal share of health problems, commonly experiencing back and knee degeneration, diabetes, dental problems, and often giving birth prematurely to low–birth weight infants (see, e.g., [ 7 , 9 , 10 , 11 , 30 , 32 , 33 ]). Four common health problems among Triqui pickers that will be explored further below include occupational injury and pain, somatization, substance abuse, and trauma. Triqui experiences of health care will also be examined.

Strawberry pickers must bring in 50 pounds of de-leafed berries every hour. Otherwise, they will be fired and kicked out of the camp. In order to meet this minimum weight requirement, they take few or no breaks from 5:00 a.m. until the afternoon or evening when that particular field is completed. Often, they are reprimanded nonetheless and called perros (dogs), burros (burros), Oaxacos (a derogatory term for “Oaxacan”), or indios estupidos (stupid Indians). Many do not eat or drink anything before work so that they do not have to take time to use the outhouse. They work as hard and fast as they can, picking and running with their buckets of berries to the white teen checkers. Meanwhile, the white teenagers stand to the side, talking and laughing, sometimes throwing berries at each other in jest, and occasionally hurling berries at Triqui pickers with statements made at high volume such as, “Eat it!,” or simply, “No!”( Figure 6 ). One of the first Triqui pickers the investigator came to know, named Abelino, explained the experience of picking in the following way ( Figure 7 ):

A teenage checker punches the weight of berries brought in by a picker.

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Triqui laborers picking strawberries on the Tanaka Farm in Washington state.

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“… You pick with both hands, bent over, kneeling like this [demonstrating with both knees fully bent and his head bowed forward]. Your back hurts; you get knee pains and pain here [touching his hip]. Well, when it rains, you get pretty mad and—and—you have to keep picking. They don't give lunch breaks. You have to work every day like that … You suffer a lot in work.”

During the fieldwork, the anthropologist picked once or twice a week, providing valuable experiential data for analysis [ 45 ]. After each day of picking, the investigator experienced gastritis, headaches, as well as knee, back, and hip pain for two to three days afterward. Triqui strawberry pickers, on the other hand, worked seven days a week, rain or shine, until the last strawberry was processed. In order to more fully explore the effects of social context, including prejudice, on the health and health care of Triqui people, three individual cases will be highlighted.

Abelino: Work Injury and Chronic Pain

Due to the long hours and difficult conditions of strawberry picking, many workers complained of back, hip, and knee pain. In order to further understand the experiences and meanings of such common pain, one extended case study will be presented here. Abelino, a Triqui father of four who was mentioned above and lived near the anthropologist in the labor camp, came to the US across the deadly desert border to work long enough to save approximately US$10,000 in order to return to his hometown in the mountains of Oaxaca and build a concrete house for himself and his extended family. He summarized the need to migrate one day, stating:

“In Oaxaca, there's no work for us. There's no work. There's nothing. When there is no money, you don't know what to do. And shoes; you can't get any. A shoe like this [pointing to his tennis shoes] cost about 300 Mexican pesos. Per day, they're paying 30 or 40 pesos. You have to work two weeks to buy a pair of shoes … We have to migrate to survive. And we have to cross the border, suffering and—and—and walk two days and two nights, sometimes five days to get here and work and support the American people. Because they don't work like we do. They just get rich working a job—a light job—like the shops, the offices, but they don't work in the field. But we Mexicans from many Mexican states come here to maintain our families. We want to get permission to enter just for a harvest season and then return to our country … And we come here and it is a little better, but you still suffer in the work … Coming here with the family and moving around to different places, we suffer. And the children miss their classes … and don't learn well. Because of this, we want to stay here only for a season with [legal documents] and let the children study in Mexico. Do we have to migrate to survive? Yes, we do.”

One Saturday, Abelino experienced acute, sharp pain in his knee when he turned while picking strawberries in the row next to where his wife and oldest daughter were also picking. After continuing his work in vain hopes that the pain would go away, he told his field boss about the incident. The boss simply said, “OK,” and drove away without any follow-up. Unsure of what to do, Abelino attempted to keep picking.

Two days later, work was abruptly canceled without explanation from the supervisors, and Abelino went to a local urgent care clinic. During the course of the next year, he ended up seeing four doctors and a physical therapist, usually without a translator. During this time, he limped around camp, taking care of his kids while his wife and oldest daughter continued picking in the fields.

The urgent-care doctor he first saw explained that Abelino should not work, but should rest and let his knee recover. The occupational health doctor he saw the following week said Abelino could work but without bending, walking, or prolonged standing. Abelino went to the farm office to ask for lighter work of this sort. The bilingual receptionist told him in Spanish in a frustrated tone, “No, because no,” and did not let him talk with anyone else. After a few weeks, the occupational health doctor passed Abelino to a reluctant physiatrist who told Abelino that he must work hard picking strawberries in order to make his knee better. She told Abelino that he had been picking incorrectly and hurt his knee because he “didn't know how to bend over correctly.” Once Abelino had recovered, this doctor explained to the researcher that Abelino no longer felt pain, not because he got better, but because the picking season was over and he could no longer apply for worker's compensation. Two years later, Abelino still tells the anthropologist that he has occasional knee pain and that “the doctors don't know anything (no saben nada) .” Knee and back pain continue to be the most common health complaints among pickers on the Tanaka Farm (see also [ 10 ]).

Crescencio: Somatization and Substance Use

Crescencio, another Triqui father who lived in the same camp, approached the investigator later in the summer and asked for medicine for headaches. He explained that every time a crew boss called him names on the job, made fun of him, or reprimanded him unfairly he got an excruciating headache in the center of his head. He told the researcher that the headaches made him more prone to anger with his wife and his children and that he wanted treatment so that he would not be at risk of abusing them. He had seen a few doctors in Mexico and the US as well as a traditional Triqui healer, all to no avail. The only remedy he found to make the headache go away was drinking 24 beers. He resorted to this form of self-medication a few times in an average week. A week later, he saw one of the doctors in the local migrant clinic to seek help, but left disappointed. In an interview, the physician explained her perspective:

“Well, yes, he thinks that he is the victim and thinks that the alcohol or the headache makes him beat his wife … but really he is the perpetrator and everyone else is the victim. And until he owns his problem, he can't really change. I'm on the CPS [Child Protective Services] subcommittee and so I know a lot about domestic violence, and what we've seen is that nothing really works, none of these migraine medicines or anything, but to put people in jail because then they see a show of force. That's the only thing that works because then they have to own the problem as theirs and they start to change. It's a classic case of domestic abuse. He came to see me once, and I told him to come back two weeks later after not drinking. But he didn't come back two weeks later; instead, he came back a month later and saw not one of our best doctors but an OK doctor, one of our locums. Apparently, he told the doc something about when people at work tell him what to do, it makes him mad and that's what gives him a headache. Obviously he has issues. He needs to learn how to deal with authority. We referred him to therapy. Do you know if he's going to therapy?”

While the specific details of Crescencio's story are unique, his problem is representative of the common phenomena of somatization and substance use among migrant laborers. When asked to enumerate the most common problems of this population, several physicians and nurses in the local migrant clinic in Washington state responded that the issue they saw most commonly was depression in the form of somatization and/or substance abuse. Commonly, when somatic complaints of unclear etiology and substance use were explored further during interviews of pickers in the context of rapport and trust, it became clear that many of the important proximal determinants of such suffering involved social and cultural factors. The most common of such factors included disrespect from supervisors and area residents, lack of choices for work, lack of opportunities for social advancement, fear of being deported, and grieving the distance from family members and home in Oaxaca state.

Bernardo: Trauma and Political Violence

Violence and trauma make up another important health-related factor experienced by every Triqui picker in one way or another, from commonly reported border violence, to frequent violence at the hands of the Mexican military in Oaxaca state, to regularly experienced violence in the workplace. Some of the myriad health effects of such experiences of violence are made clear in the extended case study of Bernardo. Bernardo, a Triqui man who indicates that he is now somewhere between 62 and 80 years old, was one of the first Triqui people to come to the US in the 1980s. He stopped working on the farm and moved back to Oaxaca when he became a US resident in the 1986 amnesty. He has spent five months each summer since then working in a fish processing plant in Alaska in order to support himself, his wife, and his sister. The rest of the year, he returns to the mountains of Oaxaca, to be with his family. This area, sometimes called “the Triqui Zone” of Oaxaca, is reputed to be violent. There have been several small land wars between Triqui villages and neighboring mestizo towns. There have also been conflagrations between a local movement cum political party, known as the Unified Movement for Triqui Progress (MULT), and the political party that has been in power in Oaxaca for dozens of years, the Institutional Revolutionary Party (PRI) ( Figure 8 ).

The hometown in the mountains of Oaxaca, Mexico, of many Triqui migrant laborers.

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During part of the field research in Oaxaca, the investigator lived and worked with Bernardo and his family in the small city of Juxtlahuaca. This family is originally from a small Triqui town further into the mountains; however, the family's land was on the edge of town next to a different village, with whom there was a slow, ongoing land and political war. Bernardo described this situation:

“There have been many deaths. Oh! Many deaths! … Maybe eight, maybe ten in the last two months ... They kill between political parties. There is a lot of danger here. If you say something and don't realize someone heard you and they are hidden, all of a sudden, ‘Pow!' or a knife and you are dead. I can't go out at night, even if we need something. Not at night, no! A lot of danger. There is a lot of danger here. During the day is fine. I go to the market and to the doctor, but not at night. I have fear. A lot of danger, yes, yes.”

Bernardo's family, along with many others, moved to Juxtlahuaca to escape the violence. With the money Bernardo made migrating to the US, the family was able to build a house and start a very small store in Juxtlahuaca.

One night, Bernardo asked the investigator if he knew of any good medicine for Bernardo's stomach. Bernardo explained that he had experienced stomach pain for approximately eight years. He stated, “My stomach does not like food any more. I don't have the desire (ganas) to eat. It hurts to eat.” Before he goes to Alaska each spring, his doctor in Juxtlahuaca gives him a long series of vitamin shots and “shots to give hunger” so that he has enough energy to work. When he returns from Alaska, he is weak and thin and is given another long series of the same shots to recover from the work. The following description of his pain was punctuated by groans and accented by many hand gestures:

“It gives me such a pain! Right here [pointing to his stomach], such a pain, and it goes up … It jumps and jumps like chords jumping, like this, like this [rapidly opening and closing his hands] … I wake up and my stomach hurts; ay! It was hard like this bench is hard … So, I mash my stomach with a soda bottle. I mash, mash, mash, mash here, mash here. And it helps a little. But, ay! I can't stand it. I can't eat! Nothing! Each time I eat it hurts; but it hurts. But I hold out [me aguanto], I hold out, and I hold out until work is over. It feels like it is twisting, twisting like so [rotating his hands quickly].”

Bernardo explained that he has lost weight over the past several years and feels weak each morning when he goes to work his family's cornfields at 5:00 a.m. He has to force himself to eat a tortilla and an egg before working his fields.

In response to the question, “Why does your stomach hurt?”, Bernardo explains that it is because he has worked so hard all of his life. Bernardo has lived the migrant life since the age of eight, working from dawn until dusk seven days a week in northern Mexico or the US, then returning to work hard on his family's land in Oaxaca state. “So much working (tanto trabajar) wears out a body,” he explained with a weak smile.

Yet, when asked more specifically why the pain started eight years ago, Bernardo added:

“Also … the soldiers punched and kicked me many, many times. Punched like this [making a fist and punching into the air], here in my stomach. Ah! But many beatings [chingadazos] … Until there was blood all over. Because of the movement [the MULT]. People said rumors against us and the soldiers, the blue ones, came and beat me up.”

Eight years ago, Bernardo was kidnapped and tortured by the Mexican federal police in charge of narcotics enforcement (“the blue ones”), who are supported by US Drug Enforcement Agency money. Bernardo was beaten several times and put in prison. There, he was allowed no medical help and resorted to drinking his own urine as a remedy to help his abdomen heal. Furthermore, he reported that he was denied food many of the days while in captivity. Members of the “blue military,” as he called them because of their uniform color, told him that he had been kidnapped under the suspicion that he was part of the MULT, even though the movement has no history with drugs. After several months, the mayor of Juxtlahuaca wrote, signed, and stamped an official paper stating that Bernardo had done no wrong, and he was finally released from prison.

In an interview with the researcher, Bernardo's physician in Oaxaca state told the investigator that Bernardo has a peptic acid problem like gastritis. He suggested that this gastrointestinal problem was due to eating “too much hot chili, too much fat, and many condiments.” He continued, “They [indigenous people] also don't eat at the right time, but wait a long time in between meals.” The physician gives Bernardo an H2-blocker to decrease his peptic acid levels. He stated that proton-pump inhibitors would work better, but they are too expensive for Bernardo to afford. He also recommends that Bernardo eat milk and yogurt. Finally, the physician gives injections of vitamin B12 in order to treat what he diagnosed as Bernardo's neuropathy. He explained that this neuropathy was due to the fact that indigenous people “bend over too much at work and bend too much in their sleep.”

While most Triqui people have not been wrongfully imprisoned and beaten by the federal police, all of them are affected in one way or another by political violence. Beyond crossing the politically violent border between the US and Mexico [ 46 ], Triqui migrant laborers deal with land wars and political violence in their hometowns every time they return home. For some, like Bernardo, this leads to somatic complaints, for some it leads to poor mental health, and for still others it leads to mortal injury (e.g., five Triqui people involved in this research project were shot in Oaxaca, four of them fatally, during the field research; see also [ 47 , 48 ]). Much of the violence in southern Mexico is directed against indigenous people, especially against those involved in movements working toward equality. This violence affects indigenous people not only in Mexico, but also when they are in the US as migrants.

Racism, Naturalization, and Internalization

The second primary question of the hypothesis-testing phase follows: How has the order of ethnic, citizenship, labor, and health inequalities become seen as so normal that it is rarely questioned or challenged? Though there were many different prejudices, stereotypes, and metaphors employed by interviewees to make sense of these inequalities, one of the most prevalent involved perceptions of natural differences among the bodies of different ethnicities. When asked why very few Triqui people were harvesting apples, the field job known to pay the most, the Tanaka Farm's apple crop supervisor explained in detail that “they are too short to reach the apples, and, besides, they don't like ladders anyway.” He continued that Triqui people are perfect for picking berries because they are “lower to the ground.” When asked why Triqui people have only berry-picking jobs, a mestiza Mexican social worker in Washington state explained that “a los Oaxaqueños les gusta trabajar agachado [Oaxacans like to work bent over],” whereas, she told me, “Mexicanos [mestizo Mexicans] get too many pains if they work in the fields.” In these examples and the many other responses they represent, perceived bodily difference along ethnic lines serves to justify or naturalize inequalities, making them appear purely or primarily natural and not also social in origin. Thus, each kind of ethnic body is understood to deserve its relative social position.

At the same time that area residents and other farm employees naturalized the position of Triqui pickers, it was also rare for the Triqui pickers to question the hierarchies described above. On one of the days when the investigator picked strawberries, a tractor with long metal extensions spraying something in the air drove through the same field that was being picked. The anthropologist asked a supervisor what it was. “Do you really want to know? You sure you want the truth? Dangerous insecticides,” he said, shaking his head. In addition, one of the primary hand-washing and outhouse stations on the edge of the field was located within an area of several large canisters marked with pesticide danger signs. Strawberry pickers in Washington state worked every day without gloves as the visible pesticide residues dissolved in the mixture of strawberry juice and morning dew that would stain their hands dark maroon for days. If they ate anything, they ate it in the fields, while picking, without washing their hands to save time and make the minimum weight. The only education for pickers about pesticides came from a short warning cassette tape in monotone Spanish played inaudibly in one corner of a huge warehouse full of 100 or more workers and their children during the picker orientation ( Figure 9 ).

Containers of pesticides surround one of the hand-washing stations and outhouses on the farm.

https://doi.org/10.1371/journal.pmed.0030448.g009

The same week as the spraying described above, the researcher, along with several Triqui pickers, watched a video about the health-related dangers of pesticides. Afterward, one commented matter-of-factly that “pesticides affect only white Americans (gabachos) because your bodies are delicate and weak,” whereas “we, the Triquis, are strong and hold out (aguantamos) .” The others agreed. Here, Triqui people internalize their position in the labor and health hierarchy through their pride in perceived bodily differences. Triqui people naturalize the labor hierarchy utilizing similar perceptions of ethnic difference. Because of these perceptions, the migrant body is seen as belonging in its position in the very system that then leads to its deterioration.

Figure 10 summarizes, utilizing a conceptual diagram, many of the themes resulting from this field research. The y -axis represents respect, health, financial security, and control over one's own time as well as control over others' labor. The various columns along the x -axis show differences among types of work, citizenship statuses, languages, and ethnic groups. Gender is another important variable that is not considered here due to space constraints, but should be examined further in future research.

https://doi.org/10.1371/journal.pmed.0030448.g010

In conclusion, this research reveals insights into the relationships between ethnic and citizenship prejudices and the health status and health-care experiences of migrant laborers. The health and well-being of such workers are influenced on several levels from international to domestic, as well as local to occupational and clinical. To summarize the results of this study, working and housing conditions are organized from best to worst among farm employees according to ethnicity and citizenship status: from white or Asian-American US citizen to Latino US citizen or resident to undocumented mestizo Mexican to undocumented indigenous Mexican. This ethnicity–immigration–labor hierarchy determines a correlated hierarchy of health status, with the undocumented Triqui Mexicans having the worst health. Yet, those involved—including medical professionals—are largely unaware of the social context of health. Subtle forms of racism, specifically understandings of ethnic bodily differences, function to justify and naturalize the place of each group in the labor and health hierarchies (Holmes, In Press).

The choice to use qualitative methods presents advantages as well as disadvantages. The ethnographic study design does not allow for a determination of the strength of association among different factors studied. Similarly, ethnographic methods do not allow for the calculation of prevalence and incidence of various forms of suffering. The relatively small study population and its geographical specificities limit the ability to generalize to other populations of migrant workers worldwide. The recruitment of the majority of the study participants from the Tanaka Farm labor pool inevitably excluded those workers who had become sick or injured enough to be unable to return to their work, and this may, therefore, lead to an underestimation of suffering.

As shown by various researchers in the field of social studies of science and technology (e.g., [ 49 – 51 ]), the social position and social interactions of scientific investigators influence their own research as well as how their results are viewed by others. This is true not only in laboratory science, but also in social science. In the case of ethnographic research such as the present study, the interactions of the investigator and the participants become data for analysis. Much of this kind of data is considered above. In addition, the researcher affected the populations studied in several other practical ways. For example, his presence during the housing search of the Triqui people in central California appeared to make landlords of substandard housing nervous and, thus, more likely to reject these Triqui people as tenants. His presence in Washington state played a significant role in raising awareness of the desires of Triqui laborers to have English as a Second Language (ESL) courses as well as gravel covering the alternately dusty and muddy labor camp driveways. Through the coalition of various community members and organizations, ESL courses were offered in the labor camps during the second summer of the research and the primary camp driveways were graveled. The investigator's presence in Oaxaca meant that the families with whom he lived could communicate—via sending and receiving small packages of food and clothing—more easily with their loved ones across the border, though it also meant that the children in these families were sometimes made fun of by their peers. As a final example, the investigator was involved in raising awareness of the desire of several of the Triqui high school students to have a Triqui Alto dictionary in order to prevent the continued loss of their language. Through various circumstances, a linguistics doctoral student from one of the investigator's home institutions is currently working on this project (C. Dicanio, personal communication).

Ethnographic research did, however, allow for in-depth investigation into the dynamics of complex social forces—such as meanings of ethnicity and experiences of inequalities—that are not amenable to epidemiologic or survey studies alone. Participant observation allowed the investigator to move beyond worker, employer, or medical professional report in order to observe and experience interactions and conditions firsthand. Ethnography uniquely allowed for the investigation of these multiple forms of data and multiple points of view in order to produce data and analysis that more fully represent the complex reality it studied. Finally, long-term involvement in the lives of marginalized groups that may often be suspicious of outsiders allowed for rapport building that increases the validity of data.

Structural Features of Inequalities

As the qualitative data above suggest, these hierarchies are not conscious or willed on the part of the farm owners or managers. Much the opposite, larger structural forces as well as the anxieties they produce drive these inequalities. The Tanaka Farm executives are ethical people who have a vision of a good society that includes family farming. Perhaps instead of blaming the growers, it is more appropriate to understand them as human beings trying to lead ethical, comfortable lives, committed to the family farm in the midst of an unequal, harsh system. The corporatization of US agriculture and the deregulation of international free markets squeeze growers such that they cannot imagine increasing the pay of the pickers or improving the labor camps without bankrupting the farm. In this case, structural violence is enacted by market rule and then channeled through international and domestic racism, classism, sexism, and anti-“illegal” immigrant sentiments. Wacquant [ 52 ] points out the analytical pitfalls of overly generalized, nonspecific use of the term “structural violence.” This term is employed here to mean simply the violence—visible as injury to body and self-respect—enacted by social structures, primarily exploitative economic relations. Engels [ 53 ] explains that the effects of unequal social structures can be “as violent as if [the economically exploited] had been stabbed or shot.”

Abelino, Crescencio, Bernardo, and other farm workers endure forms of suffering that are directly and indirectly influenced by social and political forces. The late modern system of free-trade capitalism has compounded global inequities, leading southern Mexico into a deepening economic depression. This poverty is one of the primary factors producing the local land wars as well as the survival-seeking out-migration of able-bodied workers. Once in the US, these people are relegated to some of the most unhealthy labor positions. The political alliances of the Mexican military, with its ties to the US federal government via financing, have translated into a repression of the many movements seeking redistribution of power in a more equitable fashion. The torturing of members of indigenous rights movements by the military functions not only to deepen the suffering of its victims, like Bernardo, but also to reinforce the neoliberal economic system and thus deepen global economic inequalities.

Symbolic Features of Inequalities in Society and the Clinic

In order to further understand the naturalization of the inequalities described above, Pierre Bourdieu's theory of symbolic violence proves effective [ 54 – 56 ]. According to Bourdieu, symbolic violence is the naturalization and internalization of social asymmetries. He explains that humans perceive the social world through lenses issued forth from that very social world. Thus, we misrecognize the social order as natural. The structures of inequalities comprising the social world are thus made invisible and taken for granted for all involved. The concept of symbolic violence also inheres a sense of internalization such that one does not perceive only others, but also oneself, as belonging in particular social and economic locations. As seen in the qualitative data above, perceived bodily differences along ethnic lines comprise one of the lenses through which symbolic violence is enacted such that each ethnic group is understood to deserve its relative social position. The structural violence inherent to segregated labor on the farm is so effectively erased precisely because its disappearance takes place at the level of the body, and is thus understood to be natural. This was seen in the data retrieved from area residents, farm employees, and medical professionals.

Physicians and nurses in migrant clinics work hard under relatively poor conditions without access to state-of-the-art medicines and instruments and are often frustrated by the obstacles in a system with irregular funding and virtually no insurance coverage. One physician in Washington state explained one of many obstacles in her work: “Most [migrants] don't have any insurance, so that's even harder 'cause you start them on a medication and you know they are just going to be off it again wherever they go next.” Despite the hard work and dedication of clinicians in the field of migrant health, the Triqui people regularly stated that the “doctors don't know anything (no saben nada) .” What explains this apparent discrepancy?

In The Birth of the Clinic, Michel Foucault describes what he calls the “clinical gaze” [ 57 ]. Foucault explains that there was a change in clinical medicine with the advent of cadaveric dissection in the early modern era. Whereas physicians used to focus on the words of the patient, the symptoms as expressed by the patient, they began to focus on the isolated, diseased organs, treating the patient more and more as an object, a body. As would be expected within this paradigm, the medical professionals described above saw the Triqui bodies in their offices, yet were unable to engage the human and social context leading to their suffering. These clinicians, like most medical professionals, were not trained to see the social determinants of health problems. Thus, it was unavoidable that they would fall into the trap of utilizing a narrow lens that decontextualizes sickness. Thus, many of the most proximal determinants of suffering were left unacknowledged, unaddressed, and untreated.

Beyond this acontextual gaze, physicians in North America today are also taught to see behavioral factors in health—such as lifestyle, diet, habits, and addictions. Behavioral health education has been added as part of the laudable move to broaden medical education within the paradigm of biopsychosocial health first described by George Engel in 1977 [ 58 ]. However, without being trained to consider the global political economic structures and local prejudices that shape the suffering of their patients, health professionals are equipped with only biological and behavioral lenses to understand suffering.

As seen in the cases above, well-meaning clinicians often blame the sickness on the patient—e.g., the assumed incorrect bend while picking, the supposed trouble with authority, or the “incorrect” eating and sleeping habits—without appreciating the local hierarchies and international forces that place their patients in injurious working conditions in the first place. Ironically, the progressive move to include behavioral health in medical education without the correlate inclusion of social context may be precisely that which leads clinicians to blame the victims of social suffering. In addition, stereotypes of Mexican migrant workers—e.g., that the men are alcoholics and abuse their wives—are supported by lenses that decontextualize the suffering and marginalization often at the root of their poor health behaviors. Even those health professionals acutely aware of the social determinants of health may resort to biological and behavioral explanations as a defense mechanism against what they experience as overwhelmingly hopeless. The relationship between undocumented Mexicans and the migrant clinic is further convoluted by the clinic's own affiliation with the US government via funding and regulations. This affiliation foments intermittent rumors and fear among Triqui workers that clinic staff may turn them in to the Border Patrol.

Implications for Medicine and Beyond

Drawing on the ethnographic data above, this article will close with recommendations toward improving the health of migrant farm workers in four areas: research into ethnic and immigration status disparities in health, clinical interactions with individual migrant laborers, medical education, and policy making.

First, in order to further understand ethnic and citizenship disparities in health, researchers must take into account the international context of migration. Research remaining limited to local and domestic factors will inevitably fall short of describing the reality for immigrants. Qualitative and quantitative researchers must find ways to explore the implications of racism and anti-immigrant prejudices in the development and maintenance of health disparities. Further dissecting the mechanisms by which social inequalities become taken for granted is an especially critical area for such research, especially in the current political climate. Only in this way will people become able to see the social determinants of such inequalities and capable of imagining and working toward alternatives. In-depth, ethnographic methods appear to be especially capable of describing the webs of causation of health disparities without losing the complexity of the context in which they are embedded.

Second, the ethnographic data indicate several steps clinicians can take in order to provide more appropriate and competent care to this population (see also [ 59 ]). Given the difficulties of clinical encounters in a medical system that is practiced—as it is in the US—on an individual level, often semi-controlled by funders, and usually in unrealistically short time allotments, clinicians must be creative within the constraints of their context of practice, while also considering means to change these constraints. The first step for clinicians to provide more appropriate care is screening, identifying an individual patient as a migrant laborer. The clinician may ask such questions as: Where is the patient's hometown? How long have they been in the area and in their present post of employment? What are their work and housing arrangements? Does the patient feel that she has the ability to negotiate with her employer and landlord over these conditions? For undocumented immigrants, a physician's acknowledgement of these circumstances and validation of their right to safe conditions may be a powerful intervention in and of itself (see also [ 59 ]). In addition, workers at risk of depression and substance use may be identified and referred for further help. The second step is to consider the contributing etiologies of a patient's sickness from not only biological and behavioral but also social domains [ 60 – 62 ]. The clinician can ask herself: How do international and local inequalities, occupational structures, economic forces, racial inequalities, and other social and cultural factors influence the health and sickness of the patient? This identification and acknowledgement of social determinants of disease not only allows for a more precise understanding of a patient's sickness, but also prevents unfairly blaming the patient for their sickness. This, then, avoids inflicting further psychological harm at the same time that it allows for the building of a more effective therapeutic relationship. Finally, in their mandate to alleviate suffering, physicians are called to attend to all of the determinants of a given patient's sickness. Instead of addressing solely the biological and behavioral etiologies by offering only medical, surgical, and psychological therapy, this mandate indicates that physicians should also tackle social determinants. This could take the form of advocating for the amelioration of specific workplace hazards, educating migrant laborers about their rights, and pointing them in the direction of available services in the area, or becoming involved in policy making (as described below).

Third, in order for the clinical changes above to take effect, medical education must be broadened to reflect the multifaceted etiology of disease. Those readers who work in medical curricula will recognize that the vast majority of training programs spend most of their time on biological or pathophysiological etiologies and a small part of their time on psychological or behavioral components. Very few programs spend any appreciable time teaching social analysis to medical trainees. This study shows that the social context is critical to the development of sickness and suffering among migrant workers, and this is likely true among other populations. The lack of training to recognize social determinants of disease relates partially to a paucity of capable educators in this area. Most academic physicians do not have adequate training in social analysis themselves in order to teach it to their students. Most social scientists do not know how to speak the language of medical students and, thus, either come off as ethereal or attempt to simplify their message and inadvertently make it boring. Medical educators must attempt new methods for social medicine education—such as the case-based program of social medicine grand rounds at the University of California San Francisco—and new programs and further funding must be developed for training social medicine educators who are both knowledgeable in social theory and conversant in clinical medicine.

Policy making will be the final area of consideration of implications from this study. In the specific case of Triqui migrant laborers and in the world at large, medicine and sociopolitical inequalities are interrelated. As Rudolf Virchow argued in the 19th century after his investigations in population health, “Medicine is a social science, and politics is nothing else but medicine on a large scale” [ 63 ]. He also said that, due to the unequal distribution of morbidity and mortality along socioeconomic classes and the calling of physicians to alleviate suffering first and foremost, “physicians are the natural attorneys of the poor” [ibid]. With these reasons in mind and considering the moral authority of medical personnel in much of the world, it is essential for physicians to consider and become involved in politics. In this effort, it is important to take cues from the long history of health and community activism that has revolved around migrant farm workers' rights as related to the present research findings, from the United Farm Workers nationally to the Tierra Nueva Family Resource Center in western Washington state; from Marion Moses and the Pesticide Education Center's online database to the Food Justice Alliance's roundtable discussions; and from the No More Deaths Movement of Arizona to the programs of California Rural Legal Assistance.

Mexican migration to the US is complexly determined by international market policies, global power inequalities, as well as regional and local prejudices and fears. The nexus of political economic structures driving migration with legal structures barring entry to immigrants and widespread anti-immigrant sentiments proves unhealthy and dangerous. This nexus is becoming especially volatile at the time of this writing [ 64 ], with the US Congress discussing bills that would give local police the authority to investigate and enforce federal immigration laws, federal policy makers proposing hundreds of miles of new fence and significantly increased military personnel along the already militarized US-Mexico border, and the George W. Bush administration discussing a poorly defined temporary worker program that appears to make the power differential between worker and employer even greater than it is already. While policy change is critically necessary, any proposal that does not address the primary political and economic determinants of migration is doomed to fail. Amelioration of the social suffering inherent to undocumented labor migration requires a careful consideration and confrontation of historical, political, economic, and symbolic factors producing and reproducing this phenomenon. The further deregulation of international and domestic trade—such as the currently proposed Central American Free Trade Agreement [ 65 ]—should be questioned critically and vocally for its potential effects on marginalized people and their ability to survive in their home communities without being forced to migrate for work. Policies supporting the labeling of products according to the labor conditions under which they were made—such as those agricultural products from farms with United Farm Workers contracts, thus allowing consumers to make decisions related to this information—should be considered strongly. The growing Domestic Fair Trade Working Group is working toward such a labeling program in the US [ 66 ].

The Triqui people involved in this study indicated repeatedly that they want to keep their homes in Oaxaca and work in the US one season at a time. They support a fair temporary worker system that does not increase the power differential between employers and employees, as many fear the George W. Bush administration's current plan would do. The poorly outlined Bush proposal appears to link legal permission to be in the US with one specific employment contract, thus giving that particular employer the virtual power to deport via firing [ 67 ]. This inability to change employers is reminiscent of the recent convictions of slavery related to the horrendous conditions in which many migrants are already forced to work (see also [ 68 ]). A fairer program would allow employee mobility when working contracts are undesirable, unfair, or unfulfilled. The US government and US society gain much from migrant laborers and give little back beyond prejudice, criminalization, and suffering [ 16 , 22 , 69 ]. This dishonest relationship, similar to many labor migration systems around the world, must be acknowledged and changed. Medical professionals have the calling and the authority to work toward this change.

Supporting Information

Text s1. translation of the abstract into spanish.

https://doi.org/10.1371/journal.pmed.0030448.sd001

(22 KB DOC)

Acknowledgments

Special gratitude to all those who participated in the study, letting the investigator into the mundane, intimate, and exciting events of their everyday lives. Thank you to the many professors, friends, family members, classmates, and study participants who read and commented on early drafts of this paper. Thank you, especially to my doctoral committee members: Philippe Bourgois, PhD (UCSF); Nancy Scheper-Hughes, PhD (UCB); Stanley Brandes, PhD (UCB); Loïc Wacquant, PhD (UCB); Thomas Denberg, MD, PhD (UCHSC), Gaylene Becker, PhD (UCSF), and Catherine Maternowska, PhD, MPH (UCSF). Thank you, also to the Violence and the Americas Writing Group at the Center for Latin American Studies at UCB, all of whom gave feedback on my analysis and writing. Thank you to Francisco Guzman for his conceptual feedback and design expertise. Finally, any inconsistencies or oversights within this article are my own and should not be taken to reflect upon those acknowledged above.

Author Contributions

SMH designed the study, analyzed the data, enrolled patients, and wrote the paper.

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ORIGINAL RESEARCH article

Beyond technology acceptance—a focused ethnography on the implementation, acceptance and use of new nursing technology in a german hospital.

• 1 Department for Patient Orientation and Health Education, Institute for Epidemiology, Social Medicine and Health System Research, Hannover Medical School (MHH), Hanover, Germany
• 2 Department of Digital Medicine, Medical Faculty OWL, Bielefeld University, Bielefeld, Germany

Introduction: Hospitalised patients could benefit from the emergence of novel technologies for nursing care. There are numerous technical products available, but these rarely find their way into practice. Further knowledge is required about the circumstances under which technology in nursing is accepted and used. In the research project “Centre for Implementing Nursing Care Innovations”, technical innovations are implemented on a trauma surgery inpatient ward in Germany. After implementation, it was investigated: Which implemented technologies are accepted/rejected, and which factors influence the acceptance/rejection of technology for nurses?

Material and methods: A focused ethnography was used, containing two approaches: First , participant observation was conducted to examine nurses’ and patients’ interaction with technologies. Observations were fixed in a field research diary and analysed using evaluative qualitative content analysis. Second , a questionnaire was used by nurses to provide information about the use frequency and technology suitability. The results of the study were consolidated and analysed using the UTAUT model.

Results: S even studied technologies can be summarised in four result categories: (1) A Mobilising mattress, a Special projector and a Sound pillow are accepted and used by nurses and patients, because they offer a way to provide high quality care with little additional effort. (2) A Fall prevention system is consistently used in patient care as a work obligation, but since nurses consider the system error-prone, acceptance is low. (3) An Interactive therapy ball is accepted but nurses cannot use it due to the high workload. (4) An App for nurse-patient communication and a work-equipment tracking system are not used or accepted because nurses do not see a practical benefit in the systems.

Discussion: Acceptance or rejection of a product does not necessarily equate to use or non-use of the technology. Before implementation, technology acceptance among users occurs as prejudice—when users are given time to experiment with technology, intention-to-use can stabilize into sustained use. Accepted and used technologies can serve to mask problems (such as staff shortages) and encourage problematic developments, such as the reduction of contact time at the bedside. Therefore, technology acceptance should be qualified in asking to what accepted technology contributes.

1 Background

1.1 nursing, technology and acceptance.

With the growing use of digital technologies in healthcare, new technologies become increasingly available for nursing in recent years. For this profession in particular, technology is one possible response to the challenges of an ageing population being cared for by a decreasing number of available professionals ( 1 , 2 ). Technology uptake in nursing care needs to accelerate to use the potential benefits of new technologies, and enablers and barriers related to technology implementation should be investigated and understood. Potential factors are numerous, e.g., a lack of fit between technology output and user need, inappropriate design for use needs, misguided implementation efforts or institutional limitations ( 3 , 4 ). These could have an impact on the use and acceptance of nursing technologies.

Behavioural intention or actual use of technology has been studied regarding the acceptance of nursing technology. However, while new technology is implemented, the user's perspective may change due to the occurrence of unintended or unanticipated consequences of technology use ( 5 ), the social and contextual influences of implementation or facilitating conditions. For instance, through getting to know a new device and getting used to its functions and abilities, a negative expected usefulness and ease of use may shift to a positive attitude and vice versa. More research is needed to learn how and why behavioural intention shifts to a sustained and accepted actual use or a disruption of use and rejection of technology.

1.2 State of research

The adoption of new technologies in nursing is related to various determinants of technology acceptance. In the case of tele-nursing and remote visual monitoring of patients, studies have indicated that while the technology may reduce the number of falls, the acceptance of technology may only be moderate ( 6 ). Similarly, in the case of mobile healthcare communication tools, it has been shown that promoting early adopters can significantly influence user's behavioural intention to use the technology ( 7 , 8 ). Similarly, in the case of mobile healthcare communication tools, it has been shown that promoting early adopters can significantly influence user's behavioural intention to use the technology ( 9 ). Users tend to favour mobile tools for inter-professional or professional-patient communication when tools are easy to use and efficient ( 10 , 11 ). For AI technology that improves decision-making, another study have found that technology acceptance may be high among nurses and other professionals if the technology incorporates professional expertise and evidence into decision-making ( 3 ). However, such a technology may be associated with fears of loss of autonomy and expected negative impact on clinical workflows ( 12 ).

Only some studies have investigated how and why the intention to use technology in nursing may shift towards accepting or rejecting it after implementation. One study in a critical care nursing unit has demonstrated in a pre/post comparison of technology implementation that self-concern and expectation for ease of use decreased for nurses after adapting the technology ( 13 ). However, concerns about technology's impact on practice and perceived usefulness increased at the same time (ibid.). Another study has investigated the implementation of a digital oral healthcare intervention in Norway. As users adopted the new technology, they gradually changed their mode of use from—what the authors described as—“norm-based to routine-based behaviour”, highlighting the relevance of familiarisation with technology and the corresponding shift of user behaviour ( 14 ). For tele-nursing technology, it has been shown that only the performance expectancy was significant for caregivers’ behavioural intentions. After introducing the technology, the facilitating conditions and the performance became relevant for caregivers ( 15 ).

1.3 Research project and research question

The “ Centre for Implementing Nursing Care Innovations ” study (Funding: German Federal Ministry of Education and Research, funding number 16SV7892K) aims to implement new technologies in a trauma surgery inpatient ward of a university hospital in Germany. After technology introduction, we investigate the modes nurses’ use technologies and how patient care and nursing processes will change during technology implementation. The research question is:

Which implemented technologies are accepted/rejected by nurses, and which factors influence the acceptance/rejection of these technologies?

We conducted an ethnographic study and evaluated and reported the results using the Unified Theory of Acceptance and Use of Technology 1 -model ( 16 ). The advantage of this model, which unifies eight separate models, is the provision of various explanatory factors that can predict or explain both the intention to use technology and the actual use ( 17 ). UTAUT conceptualises acceptance and use not merely as individual user decisions but places user behaviour and intentions in the context of institutional, organisational, and social environmental factors that may be influenced by mediating factors (age, gender, experience and voluntariness of use).

The study's implementation strategy allows to investigate how behavioural intention to use technology may shift to actual acceptance or rejection. Following Greenhalgh et al., this strategy involves two approaches: (1) We cooperated with the study hospital and managerial nursing staff to create institutional conditions for a successful and sustainable introduction of new technology to facilitate change of working structures (implementation) ( 18 ). (2) To select suitable technologies, we involved nurses from the study ward in a participatory manner by consulting them about potential technology and its usefulness (dissemination) (ibid.). For this purpose, we identified areas of nursing care on the project ward that could be supported with technical solutions—these areas involved, for instance, assistance with geriatric patients, dangers related to falls or pressure ulcers, inefficient patient communication or long walking distances ( 19 ). Based on these areas of need, the research project first took a closer look at potentially useful technologies and examined their implementability. For this purpose, an internal guideline was developed that included the IT perspective, nursing science, ethical, legal and social implications and the known study literature on the technology ( 19 , 20 ). Once the potential technical and organizational implementability of the technology had been confirmed, it was presented to nursing staff. In workshops, they reflected on their behavioural intention to use the technology within their daily working routine ( 21 , 22 ). If nurses showed their interest in using the presented technology and therefore articulated their intention to use it, the implementation of the product followed. Afterwards, the use of technology and patterns of acceptance or rejection has been observed. All costs that are associated with the purchase and maintenance of the technology were covered by the project budget as part of the research project. In the case of maintenance and repair work, the corresponding effort was shared between employees of the project station and the research project (see Limitations).

1.4 Overview of implemented technology in the research project

During the research and implementation activities, seven technologies were implemented and researched at the project ward, the technologies can be found in Table 1 .

Table 1 . List of implemented and studies technologies.

2 Materials and methods

2.1 study design.

The study used a focused ethnographic, multi-methods investigation with a distinct qualitative emphasis. Focused ethnography is suitable for investigating social fields with high degrees of professionalism and functional differentiation by studying the entanglements and interactions between individual actors, institutional processes, settings and technologies ( 23 ). A main goal is to investigate social and cultural processes that are implicit or difficult to articulate for those being studied ( 24 , 25 ). Compared to anthropological ethnography, the focused account is characterised by short field stays and an intense data collection phase ( 26 ). The following methods were applied:

1. Participant observation of nursing workflows to explore the use of implemented technologies and

2. Questionnaire survey to explore the nurses’ perspective on the usability of the implemented products.

The steps of data collection, processing and analysis are described in the following sections, an overview of the research design can be found in Figure 1 .

Figure 1 . Research Design.

2.2 Methods 1: data collection

(a) Participant observation

The observation aimed to follow professional nurses during their workday for several hours to explore work processes and interactions with patients and other nurses with the introduced technologies. The observation was carried out by the author RK and conducted as an “observer as participant”, which means that the observer role tends to be passive, yet transparent to all participants in the field. The choice of non-functional, everyday clothing and a restrained accompaniment was intended to keep the observer passively in the background while enabling the investigation of a native perspective of the observed concerning specific “situations, activities and actions” ( 26 ).

One of the members of the research project (not the observer and no co-author) acted as a gatekeeper to gain access to the field, as he also worked as a nursing professional on the project ward. In the course of the observations, it was possible to establish personal relationships with other nursing staff who allowed access to the ward to observe shifts. In terms of recruitment, all nurses were eligible to participate whom: (1) worked as professionally trained on the project ward, (2) were currently using a technology of interest, (3) would like to be accompanied and (4) gave written consent to be observed (see Ethical Considerations section).

At the beginning, fixed time points for the observations were set. However, this pattern needed to be adjusted, e.g., because some technology was not used for an extended period and then used intensively for a short period. These required spontaneous station visits outside the fixed observation pattern until sufficient information for each technology was gathers. Another way of achieving data saturation was to present and discuss the results with the nursing staff on the ward (see section Quality Assurance).

An observation guideline (see Table 2 ) with specific questions was designed to help the observer during the field stay ( 27 ). These questions were developed deductively from existing models on technology implementation ( 28 ), adoption ( 29 , 30 ), technology acceptance ( 16 ) and intention ( 31 )—the guideline is shown in Table 2 . The instrument was developed based on multiple theoretical starting points to integrate different perspectives on technology use. The categories were later integrated into the UTUAT model, which can also be found in Table 2 (see also 2.4, Methods III ). The guiding questions were discussed by the research team and field tested before its initial use—no changes were needed afterwards.

Table 2 . Deductive categories and guiding questions for the observational units.

During the field stays, handwritten notes containing summaries, situation descriptions, reflections and ideas were taken. After each observational unit, the observation questions listed in Table 2 were used to structure the writing of open-ended, chronological fieldwork diary entries that reflect observed situations in detail, reproducing dialogues, and characterising people, technologies and situations ( 32 ).

(b) Questionnaire-based survey on technology suitability

A technology suitability questionnaire was used to investigate the range of opinions of the nursing professionals. This instrument was used additionally to the observations, because the observation could only incorporate the views of individual employees (who were working at the times observed), rather than obtain the diversity of opinions on a technical product. Therefore, a questionnaire was used that descriptively included the respondents’ views on the suitability of the technology for use. Since no meaningful case numbers can be obtained on the project ward, the use of the questionnaire can only be classified as a supplement and contextualization of the qualitative results from the observation. This instrument was developed and used in another research projects ( 22 , 33 ). The questionnaire was provided to all nurses on the project ward for each implemented product. It contained four sections:

1. Three items on the general use of the product since its introduction (use yes/no, frequency of use and, reasons for not using the technology).

2. General questions covering usability, workflow, compatibility, functionality, product quality and patient well-being.

3. Questions specific to the technology covering power supply, alarms, screens, mobility, consumables, and reprocessing.

4. Further comments on the device to be entered in free text entries.

In the general and specific sections, the questions were answered using a five-point Likert scale from ’Strongly agree’ to “Do not agree at all”—or “not applicable”.

This is a measurement instrument for technology suitability and not an instrument from the field of technology acceptance/UTAUT research. Therefore, the findings of the suitability survey are classified under the UTAUT category of (observed) effort.

All nurses received the questionnaire for each of the implemented technologies three months after the first deployment of the given technology, either in workshops or in their mailboxes on the ward. In the case of using the individual post box, they were notified at the time of distribution and with a reminder by E-Mail. Due to the long implementation phase in the study, the number of employees on the project ward varied significantly, but on average 22 full-time staff are employed on the ward. However, this number varies, mainly due to staff shortages. As the study design was set up in such a way that only one ward was equipped with technology, the questionnaire could only be used in one setting and comparisons with other wards/settings were not planned in the study design (see also Limitations).

2.3 Methods II: initial data analysis

(a) Qualitative data analysis—evaluative qualitative content analysis

The entries from the open field research diaries and the free text entries from the technology suitability survey were analysed using evaluative qualitative content analysis ( 34 ). While applying this method, each deductive main code received a set of at least three sub codes for (1) a positive manifestation, (2) a negative manifestation and (3) a neutral or non-evaluative category ( 35 ). For example, the main code of “work integration” received the sub codes (1) “smooth integrated”, (2) “problems with integration” or (3) “other”—in this care, a forth sub code for ambivalent observations were also used.

The guiding questions in Table 2 were used to develop the main codes deductively. Only one inductive main code was added for “Expectations of new technologies”. Through this approach, a code system of main codes and sub codes (see Supplementary Data Sheet ) were developed that helped to organise the data material and to perform a pre-analysis.

(b) Quantitative data analysis

In the questionnaire-based survey on technology suitability, the answers to the second and third areas (general and specific aspects of the technology) were analysed quantitatively ( 33 ). For this purpose, the scores achieved by the technology in each area were first expressed as a percentage of the maximum possible score. These two percentage results were then weighted according to the number of items in each area, and an average, general value were given. If a technology achieved up to 49%, it is considered unsuitable ; if it achieved 50%–69%, it is rated as suitable to a limited extent ; and if it achieved 70% or more, the technology is rated as very suitable .

2.4 Methods III: data consolidation

Quantitative results were compared with the qualitative analysis of the observation data and the free-text entries of the appropriate questionnaires. The data collection and analysis was performed parallel rather than sequentially. We merged and compared the data to identify consistencies, inconsistencies or complementarities ( 36 ). The basis for data consolidation and analysis was the UTAUT model, initially presented by Venkatesh in 2003 ( 16 ). Four main categories are presented in this model:

▪ “ Performance expectancy is defined as the degree to which an individual believes that using the system will help him or her to attain gains in job performance.” (ibid.)

▪ “ Effort expectancy is defined as the degree of ease associated with the use of the system.” (ibid.)

▪ “ Social influence is defined as the degree to which an individual perceives that important others believe he or she should use the new system.” (ibid.)

▪ “ Facilitating conditions are defined as the degree to which an individual believes that an organizational and technical infrastructure exists to support use of the system.” (ibid.)

The use of the UTAUT model in our study served two purposes. (1) To arrange and summarise the results along these categories for transparent reporting. (2) To use a mix of qualitative and quantitative findings to explore how much influence each category had on technology use, acceptance, rejection, and adaptation. Therefore, the observation categories from Table 2 were assigned to one of the four main categories, which can be found in the same table. The survey results were assigned to effort expectance based on the construct “Suitability”. In our study, the UTAUT model was used to evaluate observed user behaviour (therefore “Observed Performance” etc.), not used to predict user intention or behaviour. The four mediators’ gender, age, experience, and voluntariness of use (ibid.) will be addressed in the results section if relevant to the reporting.

2.5 Ethical considerations

The research project was approved by the Ethics Committee of the Hannover Medical School on the 6th of July, 2018, ID: 7933_Bo_K_2018 (amended 16th of July, 2020). The procedure was reviewed by the hospital's staff council and the clinic data protection officer. The data protection-compliant processing of research results (above all with the aim of protecting study participants) was carried out in accordance with the guidelines of the University Hospital, above all with the help of lockable rooms in the case of hard copies and password-protected drives in the case of digital data. Raw data was only shared with research project participants, and patient care leaders were merely given access to analysed, non-personal, summarized data as required, making re-identification implausible.

The scheme for situationally appropriate privacy expectations was used to identify which individuals in the field should be asked for written consent to observation ( 37 ). Written informed consent was obtained from professional nurses observed during their shifts. Before giving their consent, nurses received an introduction to the study's goals and reasons. If possible, participants in the field were informed of the observer's presence, especially to patients when first entering the patient's room ( 38 ).

Nursing professionals who completed the questionnaire also filled out a written consent form. Sociodemographic data (such as years of professional experience or age) were not collected due to the small size of nursing staff to avoid re-identification.

2.6 Quality assurance

For the reporting on methodical decisions and processes in this paper, the COREQ-Checklist was used ( 39 )—all relevant information are provided in the dedicated section of the paper or in Supplementary Image S1 .

(1) Key observational findings on the impact of technology implementation were presented, discussed and again documented in dedicated validation workshops as a form of “respondent validation” ( 40 ). (2) The research team reviewed and discussed result plausibility and implications at periodic meetings internally and in external research workshops. (3) Parts of the results have already been presented regarding individual technologies and selective research questions at conferences ( 41 , 42 ). (4) The observed nurses were offered to read the diary entries after completing them; however, no participant used this offer. Coding and consolidation of the data material was performed independently by two authors (RK & DK) and then compared. Intercoder reliability was not numerically calculated.

Two independent data entries were made to ensure no errors occurred during the transfer. The main results of this survey were presented in the validation workshops to the nurses mentioned above. All results from the questionnaire survey were presented, interpreted and discussed within the interdisciplinary team of the research project.

3.1 Participant observation

Observations began in July 2020. New technology has been explored in 23 observation units, representing 38.5 h of observation time. The author RK conducted all observations. The average time of an observation unit is two hours. These observations resulted in 132 pages of field research diary entries. Member validation workshops were protocolled. The results of these data collections are summarised in this chapter. In the course of the participant observations, fifteen nurses could be accompanied on their shift. All but one of the nurses responded positively to be observed—the person who did not wish to participate has been omitted from all observational descriptions.

Table 3 provides an overview of the observations’ results on the implemented technologies reported by UTAUT's main categories. The boxes in the table are marked with colours and indicate whether the observation results for the corresponding UTAUT category are characterised as favourable for the use of the technology (green box), adverse and unfavourable (red box), or both positive and negative and thus ambivalent (yellow box). Categories with no effect are left blank.

Table 3 . Results of ethnographic observations analysed by UTAUT-categories.

3.1.1 (Observed) performance

The mobilisation mattress and the special projector provide a positively perceived performance from the point of view of nurses and patients. The mobilising mattress is frequently used on the project ward. The individual risk assessment for the development of pressure ulcers is not the sole deciding factor for whom, when and how the system is used:

While we walk to the next patient room, the nurse says that the mattress: “almost does not matter during the day”. She explains that many patients lying in the systems require intensive care anyway, such as patients with incontinence pads that need to be changed regularly. For these patients the mattress is advantageous at night because using the system helps position patients less frequently, and one needs to wake them up less often. […] Patients who suffer from much pain are an exception: People who have suffered trauma will experience less pain due to the system’s movement. (Field Research Diary_Mobilization mattress-BE04, p. 2)

Other nurses run the system on all patients and use the system’s pause function instead to perform interventions. The special projector is primarily used in patients with dementia or agitated behaviour in two different ways: One is to calm nervous patients and address challenging behaviour. The other way is by reactivating apathetic patients, in whom the use of the projector activates memories. According to the nurses, both ways can help improve care of these patients, making care delivery easier. The decision-making is biography-based or stems from getting to know the patients' behaviour. The special projector and the mobilisation mattress are often used together.

Technologies that have shown mixed and thus ambivalent performance in the ward are observed for the sound pillow, the fall prevention system and the communication app. The sound pillow functions according to its intended purpose, as the following situation description shows:

A mask for inhalation is placed on the patient’s face—the sound pillow lies on his chest. The nurse seems surprised and says this was not easy in the last few days because the patient kept pulling the mask off his face. The patient now seems sleepy—about 2 min pass. The patient gets quieter and finally almost falls asleep. The patient seems so calm that the nurse wants to leave him alone to return in 15 min. (Field Research Diary_inmu-BE01, p. 28)

Most patients lose interest in the technology after a few days due to its repetitive sound. Therefore, an actual benefit is limited to a time range that is shorter than the patient's hospital stay. For the communication app, situations are observed where patients send their requirements, nurses read them and can react according to the current workflow, for instance to take medication with them to the room. However, the app is rarely used since some nurses question whether the app makes a difference in everyday work. For the fall prevention system, it is observed that nurses respond immediately to a bed exit. However, the perceived performance of the system is low as users report frequent false alarms or missing alarms, resulting in low system confidence.

The nurse reports that the system was running overnight but did not activate even when the patient already stood in the room. (Field research diary_SaSe-BE01, pos. 9)

The perceived performance of the system for equipment tracking is low. The system proves to have no technical problems in practical tests, so non-use initiates from a lack of practical relevance for the users. Communication and teamwork among nursing colleagues to find equipment is easier to realise according to nurses.

The interactive therapy ball is rated as neutral regarding its perceived performance because users cannot operate the technology as intended (this will be explained in detail below).

3.1.2 (Observed) effort

Nurses perceive the mobilising mattress and the special projector as easy to use. Both systems are perceived to be reliable and supportive of work processes, saving effort on time-consuming tasks and helping cope with work process-related requirements. They are perceived as being easy to install and are considered part of daily work routines. The devices do not need to be operated constantly but can be used partly autonomously (in the background), as the following entry illustrates:

While documenting, the nurse said, “On days like today, the system is worth its weight in gold.” I asked what she meant by that. She explained that with the system, she could sit at the PC for as long to document. Repositioning the patient to prevent pressure ulcers would require her to interrupt her current activity regularly. I asked her if she was confident the system was doing a good job in the background. She confirmed this and said that it was a great relief. (Field Research Diary_Mobilization mattress-BE04, p. 3)

The nurses repeatedly emphasise that using the mattress and the projector does not mean patients are left alone for long periods and interactions between nurses and patients are not reduced. Instead, it changes the nature of the interaction by removing specific tasks perceived as unpleasant, such as positioning patients.

Positive effects and ease of use are identified with the sound pillow and the interactive therapy ball, but to a limited extent. Nurses evaluate that the sound pillow has a calming effect on patients. This calming effect, in turn, directly influences patient adherence to specific therapeutic measures and makes it easier for patients to cope with difficult emotions or pain. However, many patients lose interest in the technology after a few days of use. A patient can use the pillow without the constant supervision of a caregiver. For the therapy ball—that in contrast needs the permanent presence of a caregiver –, no sustainable use can be observed. Nurses and trainees use this device in a few instances and have positive experiences, but could not use it in everyday practice due to a lack of time. Therefore the technology's easing effect could not be realised under the given work organisation.

In the case of the communication app, the tracking and fall prevention systems, findings suggest that the devices require additional effort for little to no benefit . Nurses do not see any practical benefit for the tracking system. However, an expansion within the entire hospital could be beneficial. For the communication app, some nurses find the additional smartphone impractical in everyday practice, because they are not always within reach or their pocket are already packed with other items. While the fall prevention system is used in practice, nurses mention frequent technical problems, most of the users see the product as having little overall benefit:

The nurse currently has a patient lying in the fall prevention system. This patient has not tried to get up recently, but the system has been alarming at regular intervals. This makes the system unusable; she adds “You make an effort to set it up, and then it does not even work”. (Sound pillow_Fragment 01)

3.1.3 (Observed) social influence

Four of the introduced technologies positively influenced the interaction between nurses and patients. The three technologies for patients with challenging behaviour performed similarly in this area. Teamwork is performed merely when a nurse seeks advice from colleagues on selecting suitable patients. After that, the nurses work with the technology without further cooperation. The technologies have a positive impact on nurse-patient interactions, as the following two research notes demonstrate:

For the special projector, the nurse likes the forest-walk module. She had a patient with dementia who used this module and, while watching, tried to find out where the shots might have been taken. (Special projector_Fragment_01, pos. 13)

The nurse had a night shift, and a patient could not find rest and walked around the room for several hours. She gave him the sound pillow. After that, the patient slept soundly for hours. (Field Research Diary_Communication app _BE02, Pos. 5)

Nurses also emphasise a module that displays a night sky with shining stars that is selected for patients to fall asleep at night. Nurses say that the calming and activating use of the sound pillow and special projector enable easier interaction with these patients and fewer challenging situations and conflicts. While using the mobilizing mattress, patients find better sleep than those who have to be woken several times during the night for positioning. Nurses describe that sleep improvement also improves relationships with patients.

An ambivalent influence of technologies on the social interaction of users is found in the fall prevention system and communication app. The fall prevention system does not directly affect the relationship between nurses and patients. Although patients are repeatedly surprised that nurses quickly enter the room when they try to stand up. Repeated technical problems, malfunctioning components, or the system installation lead to negatively perceived collaboration between nurses. The mediator category voluntariness of use explains why the product is frequently used on the project station. It seems plausible that the nursing supervisor requires the system to be used for liability. This factor is part of why the device is frequently used, but the overall satisfaction is low. While the Patient-nurse communication app is used, some patients particularly emphasising the benefit of additional information, such as how long they must wait for a response. The following conversation is observed between a nurse and a patient:

A feature of the app that both consider useful is task prioritisation. Both talked about how it can make sense if you know that a request such as “close the window” occurs in one room and “severe pain” in another. Both agree that it is good to process first the pain and then the window request. (Field Research Diary_Communication app_BE01, Pos. 21)

For other patients, the app has no advantage because the waiting time does not change. In addition, nurses are cautious in selecting the appropriate patient to use the app. They are concerned about low-skilled patients who send requests by accident. Others fear that the app suggests professional nursing to the patients as a (hotel) service.

None of the technologies introduced have an overall negative impact on the users’ social relationships. Regarding the tracking system, nurses find no support for the technology because communication between colleagues is more effective. Therefore, the social factor is still a robust explanatory category for non-use of technology.

3.1.4 (Observed) facilitating conditions

For the special projector, the sound pillow and the mobilisation mattress, sufficient resources for using the technologies—like technical infrastructure—are provided. Therefore, no conflicts about too few devices are found for these technologies. All nurses receive detailed training for these devices. The mobilising mattress had a problematic feature at the beginning that deactivated the system if the patient raised the head of the bed by more than 30 degrees. This often leads to unintended deactivation by patients. After consultation with the manufacturer, the limit was elevated to 50 degrees. Since this update, nurses reporte fewer problems. The sound pillow and the special projector are easy to integrate into existing facilities. All three systems can be cleaned with the regular disinfectant on the ward and no severe technical malfunctions are reported.

For the tracking system and the communication app, the findings indicate that facilitating conditions have both positive and negative influences on the use of technology. Although nurses receive training on how the technologies work, in practice, there are regular uncertainties about use. The tracking system and the communication app run mostly without technical problems. The wi-fi coverage on the station is sufficient to provide both services most of the time. In a few instances, there have been examples of the tracking system showing the wrong location of the tracked equipment:

The nurse says there was an incorrect location in the system for an electronic rail. He says that it was indicated in a different room than it was. […].The access points are installed too close to each other […].’ (Field Research Diary_Communication app_BE02, item 31)

Nurses suspects that messages from the communication app sometimes do not get through in real-time. For patients, there are currently no input devices for the app on the ward so patients must bring their smartphones to use the app. Nurses must explain the downloading and functioning to patients if they require assistance. The nurses receive this point critically since they have no time to train patients. For this reason, nurses select patients in particular by anticipating their technical abilities and patients must be motivated to use the app.

The technical and organisational conditions are limiting factors for the therapy ball and the fall prevention system:

“I have no time for [the therapy ball]. An everyday companion would have time.” “I dealt with it once and then I knew how it worked, but now I have already forgotten about it.” (Protocol of member validation meeting, June 2023)

Hence, the device's menu navigation is seen as complicated. The nurses would like to use the therapy ball and would enjoy working with it but do not see the time for this. The fall prevention system exhibits system errors and false or outstanding alarms that hinder its use. Caregivers repeatedly report that the device's correct installation and operation is complicated, resulting in uncertainties.

3.2 Technology suitability from nurses’ perspective

The survey on technology suitability could be conducted on all technologies. The results can be found in Table 4 .

Table 4 . Results of the suitability survey by nurses that used implemented technology.

The number of participants varies because the average number of nurses working on the project ward varied during the research project and not all nurses participated in the survey. Similarly, not every technology was used by all employees; in particular, temporary workers often stated that they had not used the technology due to short training periods on the ward. Other people also stated informally that they did not have time to complete the questionnaires during daily work. For these reasons, the number of participants in the surveys varied from five to twelve employees (as described above, an average of twenty-two people work on the ward at full-time employment).

The comparison between the observational results and the standardised survey shows a coherent picture. The technologies are described as easing and beneficial (mobilisation mattress and special projector) are also evaluated positively. In contrast, the ambivalent (sound pillow and therapy ball) and unfavourable technologies (fall prevention system, communication app, and tracking) receive mixed evaluations. The frequency of use is also consistent to qualitative results; The technology that stood out in the observations as accepted and used received a higher frequency in the survey, like for the mobilization mattress (used daily or multiple times a week).

3.3 Summary of results

A summary of results can be found in Table 5 . The results are consistent with the observational data and the survey on technology suitability.

Table 5 . Summary of results according to use and acceptance.

4 Discussion

4.1 how accepted and not used technology can (not so easily) be distinguished.

The observation results of the study were summarised along the four main UTAUT categories and the positive, negative or ambivalent influence on technology acceptance per category per product was identified. These results can be compared with the technology suitability survey, which provides information on the assessment of nurses and the frequency of use. But how to answer which technology was used, which was not and how to distinguish the influencing factors as enabling or hindering factors?

The conclusion of whether a technology was accepted or rejected cannot be based solely on the positive, negative or ambivalent results of individual UTAUT categories, because this would confuse the phenomena to be explained (explanandum) with what it is explained by (explanans) ( 43 ). Until the outcome of the implementation process is uncertain, classifying the influential factors from the UTAUT categories in the implementation process is unattainable. At this point, frequency of use could be utilised as a proxy for general product acceptance but little data could be collected on this. In addition, a technology may be highly accepted even though it does not need to be used regularly.

To solve this problem, we use ethnographic sensibility. This term refers to a feeling or impression towards the ethnographic , i.e., the lived and experienced reality in the research field, about its “complexity, contradictions, possibilities, and grounds [for the observed] cultural group” [( 44 ), see also ( 45 )]. This sensitivity was gained by the observer over years of field research activity and enables knowledge about the users’ general attitude towards the technologies, which was needed to situate the results eventually.

The above presented summary of four result categories leads to the follow consequences:

(1) A predominantly positive influence of the technology in terms of the UTAUT categories (see Table 3 , green fields) strongly indicates that the technology is used and accepted.

(2) Use and acceptance cannot be equated. The fall prevention technology—acceptance low, but regularly used—and the interactive therapy ball—high acceptance, but not used—shows that these outcomes do not have to exist simultaneously.

(3) The occurrence of more than one origin of negative and ambivalent influence of the technology (see Table 3 , red and yellow fields) strongly indicates that the technology is not accepted or used regularly.

(4) The main categories of the UTAUT model can be a strong indicator for explaining technology acceptance. However, they should be distinct from explanatory factors because factors like perceived usefulness or ease of use occur within broader socio-technical constellations and contexts of actualised technology use ( 46 ). Explanatory power unfolds with an understanding of the use context. This context was approached in our study by using ethnographic sensitivity.

To conclude the four consequences, it takes more than adding variables to predict user acceptance towards technologies. Instead, acceptance emerges as the result of complex socio-technical arrangements in which users must convince themselves of the benefit of technology for their actions by constantly trying, failing and succeeding.

4.2 Intention to use technology must be stabilized by experimenting

Some expectations users set regarding a technology's usefulness were not met after implementation. The intention to use technology indicates a necessary curiosity that motivated the start of technology use. However, this is no guarantee that a sustainable technology acceptance will occur. Users take cautious first steps in using novel technologies when familiarity with and skill to use technology still needs to be established. In this initial, critical experimentation phase, users renegotiated attitudes toward the technologies through positive or negative experiences.

On the one hand, unanticipated adverse effects—such as frequent false alarms—could change a high expectation into scepticism or reservation ( 5 ). On the other hand, surprising or hoped-for effects that turn out to be true could result in positive attitudes among users. This was frequently observed, for instance, when nurses asked whether they could be supplied with more system mattress, sound pillows or special projectors to cover demands.

Different users face the introduction of technologies with different skills and prior experience and with varying degrees of optimism or scepticism. Age and experience as mediator variables in the UTAUT model provided a valuable orientation for our analysis. However, introducing a helpful technology can transform existing work conditions, changing how a work field and a social reality functions ( 47 ). While the different preconditions among users may provide clues to different levels of acceptance and rejection, a helpful technology can change these preconditions among users [for the case of generalised distrust among nurses towards technology, see ( 48 )]. Thus, it is more plausible to assume that a rejected technology does not bring any actual benefit instead of assuming a primordial attitude of rejection among users who would not give valuable technologies a chance (and vice versa).

4.3 Acceptance may not be sufficient

Our results show that four technologies—the mobilising mattress, the special projector, the sound pillow and the fall prevention system—offer a way to mitigate the high demands of a professional nursing work environment that is increasingly characterised by staff shortages and a growing number of multi-morbid patients. The other three technologies—the tracking system, the communication app and the therapy call—could not meet these demands. From an acceptance perspective, this can be understood as fulfilled or unfulfilled device performance expectations.

Alternatively, these results can also be explained by the fact that the successful technologies can be operated in a background mode. A “background relation” between a technology and a user can be explained by a device that the user does not continuously operate—i.e., it works in the background—but nonetheless shapes the environment and the user's experience ( 49 ). A background technology does its work without the need for permanent operation. Solely in case of a malfunction, users are reminded about its importance and have to act in an effort to repair it—an example would be an air conditioning system. It is opposed to a technology that requires the user's constant input.

The features of the mobilising mattress, the fall prevention system, the special projector and sound pillow can be utilised without constant manipulation and nurses’ presence, which makes them handy on stressful workdays. The communication app, the tracking system and the interactive therapy ball cannot be used similarly. For the therapy ball, for instance, nurses emphasised that the permanent input needed for the system’s operation is the reason they were not using the system after all.

However, when viewed from the perspective of patients, the background characteristic is problematic. After all, this implies that patients receive parts of care by technology. For instance, in the case of the mobilising mattress, re-positioning a patient to prevent pressure ulcers is not executed by a human but by the technical system, changing the caregivers’ task from an active part of doing the reposition to the passive part or controlling the technologies output. At the same time, nursing action as interaction work consists of more components than executing a nursing care action ( 50 ). As such, it also consists of emotional and sentimental labour, in which the nurse can recognise the patient's needs through interaction and communication with them and then react based on these encounter (ibid.).

The mere adoption of tasks by technology is no evidence of less social interaction between professionals and patients—also we did not collect data on contact times. However, technology that is successful because it is usable in the background may eventually reduce opportunities for interaction. The evidence of successfully implemented technology that supports nurses in managing their increasingly demanding workday under staff shortages might indicate that technology is accepted because it enables them to continue working under problematic conditions. Implementing technology may therefore reinforces problematic developments (more missing human resources) rather than questioning it. For this reason, looking purely at acceptance as a measure of successful use of technology in care may fall short. Instead, the potential change in the levels of interaction and resonance between nurses and patients caused by technology use would be a possible outcome for qualifying technology acceptance ( 51 ).

4.4 Limitations

 (1) Effects were primarily perceived by the observers and the perspective of the observed is only described from “outside” No interviews were conducted—at the time of reporting—to involve the individual perspectives. However, at least in their validity, results could be discussed and confirmed with nursing professionals.

 (2) The results from the questionnaire are subject to substantial limitations since participation varies to a high degree.

 (3) The study's argument is based on the assumption that, due to a participatory introduction process, only those technologies found their way onto the ward that the nurses also desired. However, it was impossible to verify whether this assumption could be applied to all nurses.

 (4) The narrow patient population on the project ward influenced the selection and the use of the technologies. In the example of the communication app, little benefit for the nurses could be seen because too few patients had the skills to use an app. In this respect, the (qualitative) transferability of the results to other clinical settings is limited.

 (5) Patients’ perspective is marginally represented in this paper because patients in the case of the project station are mostly passive technology users or beneficiaries and have no direct experience with the devices or cannot verbalise this, for example, due to dementia.

 (6) All costs associated with the acquisition, operation, malfunction and repair of the technologies were covered by project funds. Therefore, the transfer of interpretations to other health care settings is restricted, particularly in terms of (sufficient) resources. In other health care institutions, for instance, budget restrictions could trigger negative usage effects. The German healthcare system continues to lack sustainable, cross-setting and comprehensive solutions for financing innovative technologies. The same applies to the amount of work required for maintenance, servicing and in the event of malfunctions and repairs. In non-research settings, this must be carried out by employees and can have additional, negative consequences for the use of innovative technologies.

 (7) The decision to equip one ward with technology in the course of the implementation activities was designed to achieve a summative (qualitative) effect through the combination of different technology approaches. Although this decision enables the investigation of interaction of technologies in one setting, it disqualifies cross-setting comparisons of the effect of technology.

 (8) The seven selected systems are not integrated into existing hospital IT-systems—either because they have their own technical infrastructure (e.g., the app for communication or the tracking system) or because they do not need to communicate with other systems. This limits the implications of the study through the selection of technologies, as it was not possible to make any statements about the usage effects of interoperable systems and their advantages and disadvantages. The decision in favour of isolated solutions was made due to closed hospital IT systems that did not allow the installation of integrated systems.

 (9) A direct calculation of the frequency of technology use (e.g., how often nurses used technologies or on how many patients the technologies were used on) was not achieved. The main reason for this is that it would only have been possible to count on site, but the research team could have not been permanently on the side and the nursing staff refused to document the frequency of use due to a lack of time. For this reason, the feedback from the observation and validation workshops and the corresponding item in the written survey were used. Although these are merely indications and no hard figures, they are not of primary interest in the context of the research question, as the aim is to identify qualitative reasons for use and non-use.

(10) The influence of the mediator variable gender cannot be systematically evaluated in this study, as most employees on the ward are female. However, a direct comparison of the data with the few (three to four) male nurses does not reveal any relevant differences in use patterns or attitudes toward technology.

5 Conclusion

In the research project “ Centre for Implementing Nursing Care Innovations ”, we explored the implementation and use of seven technologies intended to support nursing care in a hospital-based trauma surgery ward. The question was investigated which of these technologies are used and accepted or not used and rejected and which factors are responsible for this.

A Mobilising mattress, a Sound pillow and a Special projector were accepted and used, whereas a Fall prevention system was used but technology acceptance among nurses were low do to a perceived low technology quality. A system to track work equipment and an communication app for patients and nurses were neither used nor accepted because users were not able to find a suitable use case, whereas an Interactive therapy ball was accepted among nurses but work condition prevented its application.

The following practical implications can be drawn:

▪ The finding indicates that acceptance of a technology should not be confused with the use of a technology. The technology might be used but acceptance is low, if, for instance, the use of the product is expected as a work obligation. In this case, users may find the technology not helpful and sustainable transfer of technology in routine practice is weak. Likewise, a technology may be accepted and users would like to transfer it into routine practice but circumstances hinder its use. In this case, an institution should facilitate chancing working conditions if the technology is desired.

▪ The categories of performance, effort, social influence, and facilitating conditions provide a practical analytical approach to identifying acceptance or rejection factors. However, they merely provide indications of actual usage and acceptance patterns. The analysis and thus the understanding of the context of technology application itself is necessary in order to be able to classify and qualify overall acceptance.

▪ Experimenting with technology stabilises the intention-to-use into a sustainable use of technology that is adapted to the application context. If users do not find a way to transform this intention into a helpful benefit or if negative unintended or unanticipated consequences emerge, acceptance of the technology remains low. Intention-to-use is not a solid characteristic among users. Users should be given the opportunity to experiment with a new technology to stabilize an intention to use.

▪ In the practical field of nursing, the outcome of technology acceptance should not be viewed simply as the realised use of technology but rather against the background of whether nursing tasks and goals have been achieved through the use and acceptance of technology, such as the improvement of emotional, sentimental and interactive work between nurses and patients.

Data availability statement

The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.

Ethics statement

The studies involving humans were approved by Ethics Committee of the Hannover Medical School. The studies were conducted in accordance with the local legislation and institutional requirements. The participants provided their written informed consent to participate in this study.

Author contributions

RK: Conceptualization, Data curation, Formal Analysis, Investigation, Methodology, Software, Validation, Visualization, Writing – original draft, Writing – review & editing. U-VA: Conceptualization, Data curation, Investigation, Methodology, Supervision, Writing – original draft, Writing – review & editing. DK: Data curation, Formal Analysis, Investigation, Methodology, Software, Validation, Visualization, Writing – original draft, Writing – review & editing. M-LD: Conceptualization, Funding acquisition, Investigation, Methodology, Project administration, Resources, Supervision, Writing – original draft, Writing – review & editing.

The author(s) declare that financial support was received for the research, authorship, and/or publication of this article.

The study was funded exclusively by the German Federal Ministry of Education and Research, 16SV7892K. All material costs for technologies involved were purchased using these funds.

Conflict of interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Publisher's note

All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

Supplementary material

The Supplementary Material for this article can be found online at: https://www.frontiersin.org/articles/10.3389/fdgth.2024.1330988/full#supplementary-material

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Keywords: ethnography, technology acceptance, UTAUT, participant observation, nursing care, implementation, technical innovations, Germany

Citation: Klawunn R, Abrecht U-V, Katzmarzky D and Dierks M-L (2024) Beyond technology acceptance—a focused ethnography on the implementation, acceptance and use of new nursing technology in a German hospital. Front. Digit. Health 6:1330988. doi: 10.3389/fdgth.2024.1330988

Received: 31 October 2023; Accepted: 11 April 2024; Published: 25 April 2024.

Reviewed by:

© 2024 Klawunn, Abrecht, Katzmarzky and Dierks. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

*Correspondence: Ronny Klawunn [email protected]

Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.

• Open access
• Published: 25 April 2024

Uptake of self-management education programmes for people with type 2 diabetes in primary care through the embedding package: a cluster randomised control trial and ethnographic study

• Melanie J Davies 1 , 2 , 3 ,
• Danielle H Bodicoat 4 ,
• Alan Brennan 5 ,
• Simon Dixon 5 ,
• Helen Eborall 6 ,
• Agnieszka Glab 1 , 2 ,
• Laura J Gray 3 , 7 ,
• Michelle Hadjiconstantinou 1 , 2 , 3 ,
• Lisa Huddlestone 8 ,
• Nicky Hudson 9 ,
• Anju Keetharuth 5 ,
• Kamlesh Khunti 1 , 2 , 3 ,
• Graham Martin 10 ,
• Alison Northern 1 ,
• Rebecca Pritchard 1 , 2 , 3 ,
• Sally Schreder 1 , 2 , 3 ,
• Jane Speight 11 , 12 ,
• Jackie Sturt 13 &
• Jessica Turner 9  

BMC Primary Care volume  25 , Article number:  136 ( 2024 ) Cite this article

Metrics details

Self-management education programmes are cost-effective in helping people with type 2 diabetes manage their diabetes, but referral and attendance rates are low. This study reports on the effectiveness of the Embedding Package, a programme designed to increase type 2 diabetes self-management programme attendance in primary care.

Using a cluster randomised design, 66 practices were randomised to: (1) a wait-list group that provided usual care for nine months before receiving the Embedding Package for nine months, or (2) an immediate group that received the Embedding Package for 18 months. ‘Embedders’ supported practices and self-management programme providers to embed programme referral into routine practice, and an online ‘toolkit’ contained embedding support resources. Patient-level HbA1c (primary outcome), programme referral and attendance data, and clinical data from 92,977 patients with type 2 diabetes were collected at baseline (months − 3–0), step one (months 1–9), step 2 (months 10–18), and 12 months post-intervention. An integrated ethnographic study including observations, interviews, and document analysis was conducted using interpretive thematic analysis and Normalisation Process Theory.

No significant difference was found in HbA1c between intervention and control conditions (adjusted mean difference [95% confidence interval]: -0.10 [-0.38, 0.18] mmol/mol; -0.01 [-0.03, 0.02] %). Statistically but not clinically significantly lower levels of HbA1c were found in people of ethnic minority groups compared with non-ethnic minority groups during the intervention condition (-0.64 [-1.08, -0.20] mmol/mol; -0.06% [-0.10, -0.02], p  = 0.004), but not greater self-management programme attendance. Twelve months post-intervention data showed statistically but not clinically significantly lower HbA1c (-0.56 [95% confidence interval: -0.71, -0.42] mmol/mol; -0.05 [-0.06, -0.04] %; p  < 0.001), and higher self-management programme attendance (adjusted odds ratio: 1.13; 95% confidence interval: 1.02, 1.25; p  = 0.017) during intervention conditions. Themes identified through the ethnographic study included challenges for Embedders in making and sustaining contact with practices and providers, and around practices’ interactions with the toolkit.

Conclusions

Barriers to implementing the Embedding Package may have compromised its effectiveness. Statistically but not clinically significantly improved HbA1c among ethnic minority groups and in longer-term follow-up suggest that future research exploring methods of embedding diabetes self-management programmes into routine care is warranted.

Trial registration

ISRCTN23474120, registered 05/04/2018.

Peer Review reports

More than 3.9 million people in the United Kingdom (UK) live with type 2 diabetes mellitus (T2DM) [ 1 ]. International guidelines recommend that pharmacological interventions for managing T2DM need to be supplemented with lifestyle and self-care behaviours for effective glucose management [ 2 ], with evidence demonstrating the effectiveness of structured self-management education (SSME) programmes to facilitate the development and maintenance of healthy lifestyle choices [ 3 , 4 , 5 , 6 , 7 , 8 ]. These programmes usually feature education, professional support, and peer support as a cost-effective means of improving outcomes for people with T2DM including glycaemic and clinical indicators, perceived wellbeing, and risk behaviours [ 3 , 4 , 5 , 6 , 7 , 8 ], and are recommended by the UK National Institute for Health and Care Excellence (NICE), American Diabetes Association, and European Association for the Study of Diabetes for supporting people with T2DM [ 9 , 10 ].

Prior to structural changes to National Health Service (NHS) commissioning and the introduction of Integrated Care Systems in England, and at the time that the current study was conceived, SSME programmes were selected and delivered by local provider organisations commissioned by a clinical commissioning group (CCG). A referral to the local SSME programme from a primary care provider was usually needed, although some areas permitted self-referral. The inclusion of a referral indicator linked to financial rewards associated with performance and patient outcomes in the NHS Quality and Outcomes Framework [ 11 ] increased the rate of referral to SSME within 12 months of T2DM diagnosis from 47% in 2013 to 75% in 2021. Attendance rates are generally low, however, and are estimated to range from 11% (derived from primary/care area data) [ 12 ] to 49% (derived from self-report data) [ 13 ].

Low rates of referral to and participation in SSME programmes have previously been attributed to a range of factors, including lack of knowledge about the programmes, misconceptions about the cost or effectiveness of SSME programmes, insufficient infrastructure to support management and referral, and lack of consideration of barriers to patient access [ 14 ]. Furthermore, attendance and effectiveness data were not routinely collected, limiting evaluation opportunities.

Within this context, an intervention (the ‘Embedding Package’) was designed to improve referral to, and uptake of, SSME programmes by supporting practices to embed SSME referral within routine primary care. The pilot study [ 15 ], protocol paper [ 16 ], and intervention development paper [ 17 ] have been published elsewhere. This paper reports the primary results from the RCT and the ethnographic process evaluation that was conducted to evaluate the effectiveness of the Embedding Package.

Intervention (embedding package)

The development work identified key components of an intervention to embed SSME into primary care. These comprised: a clear marketing strategy for T2DM self-management education programmes; user-friendly and effective referral pathway; new/amended professional roles; and a toolkit of resources [ 17 ]. The Embedding Package therefore delivered these components through a new role (‘Embedder’) and an online portal with a range of supporting resources (‘toolkit’).

The toolkit was a password-protected, web-based portal for anyone involved in implementing SSME, including commissioners, providers, and primary care staff, to help them develop embedding strategies. The toolkit comprised three sections with a range of tools, guidance, and sample resources, including how-to guides for activities such as needs assessment and programme adaptation; tools for developing patient-facing marketing and communication materials; and activities to evaluate and strengthen referral pathways and processes.

Two Embedders formed part of the intervention. The role required thorough knowledge about the benefits of SSME, strong communication skills, experience in building strong working relationships, and ability to implement toolkit content. Embedders were employed to promote toolkit use via in-person meetings, email communications, telephone calls, and attendance at health fairs with stakeholders. One Embedder focussed on SSME providers, whilst the other focussed on referring practices. Additionally, Embedders encouraged the introduction and designing of materials specific to general practice and SSME provider needs, working with providers/practices to ensure that localised resources were fit-for-purpose before organisation of production and distribution. This included organising, designing, and delivering presentations at local faith centres to begin discussions about improving access to SSME for ethnic minority populations.

Initially, an Embedder held a face-to-face toolkit action planning meeting with a provider representative to determine which toolkit elements could be implemented. The Embedder then circulated this action plan, including assigning tasks to relevant personnel. Review meetings were scheduled to discuss progress and further tailor the intervention for each locality. Actions relating to practices were disseminated by the Embedder to practice staff and the Embedder presented the toolkit in face-to-face meetings with each practice.

Study design

Using a wait-list cluster randomised design with practice-level randomisation, the Embedding Package intervention was compared with the control condition of usual care (practices following their usual SSME programme referral procedures). Informed consent for practice participation was obtained from the practice manager. Implementation and data collection occurred over a stepped timeframe (see Fig.  1 ) using a wedged stepwise approach. At step 0, baseline data were gathered for three months from all participating practices (months − 3 to 0; baseline) prior to randomisation by an independent statistician to one of two groups (1:1 stratified by CCG). The first group (immediate group) received access to the Embedding Package during step one (months 1–9) and step two (months 10–18), and the second group (wait-list group) received access to the Embedding Package during step two only (months 10–18). The intention was to recruit all practices and then randomise them to groups, but this was not possible due to delays in recruitment, so randomisation was staggered.

Stepwise Implementation Plan. a Embedding Package not actively implemented by study team, but available to practices/providers for continued use without the study-provided Embedder

Although the trial was implemented over the intended timeframe, the COVID-19 pandemic declared in March 2020 led to restrictions in movement, lockdowns, and redeployment of health care and research staff that continued until the trial concluded in August 2020. Embedding activities ceased in March 2020, as the National Institute for Health Research (the study funder) paused non-COVID-19-related research and redeployed trial staff to COVID-19 research activities. Practices and providers could still access the toolkit during this period. Changes to the protocol were planned by the research team and approved by the study sponsor and funder.

To evaluate the sustainability and effectiveness of the intervention over a longer period, the 18-month implementation period was followed by a 12-month observational period. During this time, the study team did not reinforce the intervention or engage in Embedder activities, but practices and providers continued to have access to the Embedding Package (apart from the study-provided Embedder) and could use it if they chose.

Sample size

The recruitment target was 66 practices. This target allowed for a 10% drop-out rate from the calculated sample size of 58 practices, which would provide 90% power to detect a 1.1 mmol/mol (0.1%) population-level difference in HbA1c (standard deviation = 16.4 mmol/mol [ 18 ]), an ICC of 0.05, and HbA1c measurement at baseline, step 1, and step 2 [ 19 ]. Assessment of sensitivity to changes in average cluster size found 80% power to detect a difference of 0.7 mmol/mol (0.06%), andif average cluster size exceeded 174 there would be 80% power to detect a 1.1 mmol/mol (0.1%) diffrence.

Data collection

Analytics data accessible from the toolkit website included a count of daily website and page views, active accounts, and average time spent on a page.

Clinical data from primary care records for all patients with a T2DM diagnosis attending one of the participating practices were extracted retrospectively at the end of the study for baseline, step 1, step 2, and the observational follow-up period. Where multiple data points were available within one of these timeframes, the most recent measurement was used.

Where an SSME course involved multiple sessions, attendance was defined as attending one or more session in accordance with the national criteria for structured education [ 20 ]. As most people only attend SSME programmes once, any attendance prior to the trial or during step one in the wait-list group would not be captured; therefore, while acknowledging that other factors may influence clinical outcomes, patient-level HbA1c was used as a proxy for SSME attendance and was the primary outcome for the trial, as attending an SSME programme was expected to result in lower HbA1c [ 3 ]. The main secondary outcomes were SSME referrals and attendance data (yes/no). Other secondary outcomes were weight, body mass index, cholesterol and blood pressure indicators, cardiovascular risk score, smoking status, hospital admissions, and use of glucose or blood pressure lowering medication.

Statistical analysis

Intention-To-Treat (ITT practices) were those that agreed to participate and provided baseline data. Complete-case practices were ITT practices that did not withdraw from the study or miss a data extraction.

Descriptive analyses were used to summarise patient data according to randomisation group at practice level (immediate vs. wait-list). Intervention and control data were based on the step at which the intervention was implemented for each group. Baseline data served as control data for the immediate group, which received the intervention during steps one and two, and data collected at baseline and step one served as control data for the wait-list group, which received the intervention in step two. Data regarding patient referral to and attendance at SSME were carried forward to subsequent steps.

Mixed effects linear regression modelling was used to explore differences in HbA1c levels between intervention and control conditions (95% confidence interval). Intervention group, CCG, step (baseline, 0–9 months, 9–18 months), and time (month from overall baseline) were entered as fixed effects, and practices and patients as random (nested) effects. An identity correlation matrix was generated. The primary analysis used multiple imputation for patients with missing HbA1c data (ten rows per patient) using predictive mean matching with sex, age, ethnicity, and baseline HbA1c. Two-sided p -values were calculated. Sensitivity analyses were applied to explore the effect of the intervention in subpopulations related to ethnicity, complete-case, attendance at SSME, excluding HbA1c < 47.5 mmol/mol at baseline, and up to the end of February 2020 with interactions fitted to evaluate differences. The threshold for clinically significant change in HbA1c at the population level was 1.1 mmol/mol (0.1%) (standard deviation = 16.4 mmol/mol) which may reflect a 2.1% decrease in micro and macrovascular events [ 19 ].

Mixed logistic regression models were used to analyse SSME referral and SSME attendance using the same process. Multiple imputation was not possible due to convergence, so where binary values were missing the baseline value was used. To evaluate effectiveness of the intervention over time, analyses exploring HbA1c, SSME referral, and SSME attendance were repeated with inclusion of the data collected 12 months after the end of the intervention.

Model assumptions were checked prior to analysis. Analyses were performed in Stata v17.0 (StataCorp LLC, Texas).

Ethnographic study

An ethnographic study was conducted to understand the context and implementation process of the Embedding Package within primary care practices, associated CCGs, and SSME providers. The original design had involved a series of face-to-face interviews and observations in 12 of the 66 primary care practices and associated CCGs and SSME providers. The restrictions on physical co-location to reduce the spread of COVID-19 prevented face to face interviews and observations from taking place, requiring changes to the design that were planned by the research team and approved by the study sponsor. Due to limited engagement from practices and providers, data were gathered from Embedder-generated study documents; emails between Embedders, practices, and providers; a time tracking database that Embedders used to track Embedding activities; interviews; and observation of meetings between Embedders and practices.

Interpretive thematic analysis and theoretical insights from Normalisation Process Theory (NPT) were applied to the data in four stages.

Emails were grouped by CCG locality and stakeholder group, and content analysis was conducted [ 21 ].

Interviews were coded using interpretive thematic analysis [ 22 ], generating the main themes.

Tracker data and study documents were analysed using content analysis, drawing on sensitising categories from the interview data analysis.

Data from all sources were integrated into one narrative summary, informed by the use of NPT [ 23 ], generating the final thematic structure.

Observations of meetings between Embedders and practices provided background understanding that informed analyses.

Out of 64 ITT practices (31 wait-list; 33 immediate), there were 57 complete-case practices (29 wait-list; 28 immediate) from 10 CCGs across East Midlands, Thames Valley and South Midlands, and Yorkshire and Humber (see Fig.  2 ). Of the eight SSME providers used by participating practices, one declined to participate, and one withdrew consent. Four SSME programmes were used: DESMOND, Diabetes 2gether/Diabetes 4ward, Spotlight, and Xpert Health. DESMOND was the most frequently used programme for both intervention groups (61.3% wait-list, 57.6% immediate).

CONSORT diagram a . a Receiving the intervention was defined as participating in at least one aspect of the intervention. Note: ‘Other reasons’ for exclusion included non-response (42); response after recruitment closed (1); interested but lacked current capacity (3)

At baseline, there were 29 849 eligible people with T2DM registered with ITT practices (15 527 wait-list; 14 322 immediate). Wait-list practices had an average of 501 (standard deviation = 234) patients with T2DM, and immediate practices an average of 434 (standard deviation = 367). Demographic and clinical characteristics at baseline were similar between wait-list and immediate groups (Table  1 ), with the majority of patients with T2DM being of white ethnicity (75% wait-list; 67% immediate), male (57% wait-list; 58% immediate), and average age of 66–67 years (wait-list = 67 (interquartile range [IQR]: 56,76); immediate = 66 (IQR: 56, 75)).

A higher proportion of patients from wait-list practices had already attended SSME at baseline (64%) compared with patients in the immediate group (38%), with non-referral more common amongst immediate patients (42%) than wait-list patients (19%). Wait-list patients were slightly more likely to have been referred but not attended (20%) than immediate patients (16%).

Toolkit usage

Of 88 live toolkit accounts, generic accounts accessible to more than one person were assigned to 68 practices (77.3%). Eighteen providers (20.5%), and 2 commissioners (2.3%) were assigned accounts. The toolkit yielded an average of 19 page views per day, including views by study staff that could not be extracted from the data. Between 16 and 267 s were spent viewing each page (mean = 106.9, standard deviation = 66.78).

Primary outcome

After controlling for clustering and time effects, the primary outcome of HbA1c was not significantly different between the intervention and control conditions in the main analyses (adjusted mean difference = -0.10 (95% CI = -0.38, 0.18) mmol/mol or 0.01% (95% CI = − 0.03, 0.02); p  = 0.503) or the majority of the sensitivity analyses (Table  2 ). The treatment effect for ethnic minority groups was statistically but not clinically significantly different from that found for non-minority groups with an adjusted mean difference of -0.64 (95% CI = -1.08, -0.20) mmol/mol or -0.06% (95% CI = -0.10, -0.02); p  = 0.004).

Main secondary outcomes

Referral to SSME was significantly lower during intervention conditions compared with control (OR (95% CI) = 0.85 (0.73, 0.99; p  = 0.038)), but lower attendance at SSME during intervention conditions was not statistically significant (OR (95% CI) = 0.82 (0.66, 1.01; p  = 0.063)) (Table  3 ).

Other secondary outcomes

Other secondary outcomes showed no notable differences (see supplementary materials).

Effectiveness 12 months post-intervention

To evaluate the sustainability of the intervention over time, combined data from 37,825 patients (wait-list = 20,352; immediate = 17,473) from the 18-month trial and the 12-month follow-up were analysed. When controlling for nesting and time effects, HbA1c was lower during the intervention than control conditions (-0.56 [95% CI = -0.71, -0.42] mmol/mol or -0.05% [-0.06, -0.04]; p  < 0.001). While no significant difference in SSME referrals was found (OR = 0.97; 95% CI = 0.90, 1.04; p  = 0.414), there were higher levels of programme attendance (adjusted odds ratio = 1.13; 95% CI = 1.02, 1.25; p  = 0.017) during intervention than control conditions.

The final data set comprised: 2051 emails between Embedders, practices, and providers organised into conversations where appropriate; 928 entries in the intervention ‘tracker’; 49 study documents; one interview with an SSME provider; and eight debriefing interviews with the two Embedders (Table  4 ).

Two key themes regarding intervention context and implementation were identified: making and sustaining contact; and practice/provider interaction with the toolkit.

Making and sustaining contact

Data reflected challenges with initiating and sustaining contact with practices and providers. Although Embedders described positive responses to face-to-face initial meetings, this was followed by delayed or no communication or action: “[This is a] prime example of ‘great when you’re in room, walk away from the room and they forget you exist!’ And then taking four months to get any real reply” (Embedder). 60% of Embedders’ time was spent on email communications and administration. Embedders were proactive with emails, reminders, and ongoing communication, with tracking data suggesting that email follow-up with providers and practices accounted for 13% of tracked Embedder activities. Reasons proposed for poor communication from providers and practices included lack of capacity, staff turnover, poor handover practices, and anxiety about additional workload. While the data suggested that prior contact with key stakeholders in CCG localities could improve reception of the Embedding Package, concerns from practices and providers regarding the distribution of costs and benefits were found across CCG localities: “I think they were very conscious of it not adding to their workload. There [were] lots of questions early on about ‘what does this mean for us?’” (Embedder).

Interaction with the toolkit

Time required to implement and use the toolkit was a common concern across practices and providers. All data sources reflected a high level of proactivity by Embedders to support practices and providers at a local level, including structuring action plans, localising promotional materials, and drafting publicity materials. Considerable time and effort were spent by Embedders on contextualising interventions to meet local needs, with tracker and interview data reflecting significant efforts to account for unique needs within local contexts. Their efforts were appreciated by practices and providers: “… [they’ve] been very useful at … getting us support with the communication side of things… So [the Embedder] definitely helped” (Provider).

Differences across localities in existing provision of and infrastructure for SSME, including routines for referral, practice-provider relationships, and processes for self-referral, had a substantial impact on referral activities. Although the Embedding Package was designed to account for these differences, Embedders lacked local knowledge to navigate these complexities on their own, and saw limited engagement from local stakeholders. Funding disputes and differing opinions about the role of clinicians to gatekeep access to SSMEs further obstructed Embedding activities: “… in reality, unfortunately all of their diabetes education is coordinated via a call centre hub, and they are not open to the idea of self-referral” (Embedder).

Limitations on staff capacity and existing processes limited interaction with the toolkit, even where providers and practices agreed that the toolkit was a good idea. Seeing merit in the toolkit did not often translate into engagement with it, with Embedders suggesting that changing people’s beliefs and the organisational culture around integrating the toolkit into existing practices and processes “…is going to take a lot more than putting up a few posters” (Embedder).

Embedder activities were curtailed in March 2020 due to the COVID-19 pandemic, increasing challenges in communication with practices and providers. While Embedders noticed positive engagement with social media posts from practices and providers, they did not notice a corresponding increase in engagement with the toolkit.

This study aimed to evaluate the effectiveness of the “Embedding Package”, a complex intervention designed to increase rates of referral to, and attendance at, SSME programmes by people with T2DM [ 17 ]. Implementation of the Embedding Package was not associated with significantly decreased levels of HbA1c, the primary outcomes for this study.

The ethnographic study identified multiple barriers to effective implementation of the Embedding Package, with limited engagement of practices and providers creating additional challenges. While practices and providers perceived the toolkit as a good idea, due to concerns about time, workload, and perceived benefit many did not access this resource or integrate it into routine practice, echoing similar themes raised in previous research related to the implementation of toolkits [ 24 ] and practice guidelines [ 25 ]. Additionally, the Embedding intervention targeted the referral system, meaning that while it advocated for referral to SSME programmes it did not have any direct control over programme effectiveness, which may have impacted both the primary outcome and perceptions of referrers and patients about programme usefulness.

These concerns may also have influenced willingness to engage in communication with the Embedders, with Embedders’ spending around 13% of their time on following up with practices and providers alone. Given the high time burden related to emails and administration, email communication may be an ineffective and inefficient use of Embedders’ time. Workload concerns may also have influenced willingness to participate in ethnographic data collection activities, as reflected by low levels of practice and provider participation.

While stakeholders appreciated the importance of adapting the intervention to local contexts, much of the embedding, localisation, and communication work was performed by Embedders whose role spanned multiple localities. The lack of local stakeholder engagement with adaptation activities limited the extent to which the intervention could be adapted to the local context, aligning with findings in the humanitarian space that emphasise the crucial role of local stakeholder participation in localisation activities [ 26 ]. While Embedders were proactive in pursuing engagement with local stakeholders, they encountered challenges due to differences in processes, interorganisational relationships, and opinions about accessibility and gatekeeping of SSME, perceiving that higher-level cultural and organisational change was needed to bring about the intended change.

In addition to limited uptake, Embedding activities also ceased in March 2020 before the end of the trial in August 2020 due to the COVID-19 pandemic, forcing the premature cessation of Embedder activities which may have limited effectiveness of the intervention. It is also possible that the trial design underestimated the length of time required for Embedding activities to result in systemic change.

Structural changes to NHS commissioning that occurred after the commencement of the Embedding Package programme may have impacted on uptake of the programme, as the introduction of Integrated Care Systems [ 11 ] led to many localities receiving increased funding to support increased uptake of SSME programmes. Similarities in scope and approach to the Embedding Package may have led to a perception within those localities that the Embedding Package was not relevant to them. Furthermore, the study was impacted by changes to the way that service support cost funding was organised and managed during the trial.

Although the Embedder model sought to avoid placing undue burden on local staff, the perception that it would add to workload significantly impeded engagement with the intervention. Misunderstandings about workload impact and the purpose and value of the intervention, as well as conflicts regarding eligibility and access, impacted negatively on stakeholder engagement, leading Embedders to spend a large proportion of their time pursuing communication with providers and practices and contextualising the intervention to local needs. As Embedders sat within the study team and worked across multiple CCG localities, they were not integrated into care teams and lacked local knowledge. Localisation and engagement work may have been more effective if led by local stakeholders [ 26 ], or the Embedder role had been integrated into local-level provider organisations [ 27 ], which should be a priority research question for future work in this area. Embedders sought primarily to work with professional stakeholders, such as general practices, rather than directly with patients, with local organisations responsible for leading efforts to engage patients; an alternative approach focusing on patient engagement directly may have resulted in greater uptake.

Among patients with T2DM from ethnic minority groups, exposure to the Embedding Package was associated with slightly reduced levels of HbA1c, but not increased engagement with SSME programmes, suggesting that this improvement was not related to Embedding Package activities. It is possible that the Embedding activities focussed on ethnic minority populations may have influenced this improvement; however, the COVID-19 pandemic disrupted further work in adapting SSME content for cultural appropriateness, which is another crucial factor in increasing uptake of SSME among ethnic minority groups [ 28 ]. Given the disproportionate impact of T2DM amongst ethnic minority groups [ 29 ] and the compounding impact of COVID-19 on people with T2DM in these underserved populations [ 30 , 31 ], it is crucial that future efforts to increase uptake of SSME avoid increasing inequalities, and account for factors that can compromise the effectiveness of such initiatives [ 32 ]. The Embedding Package did not appear to increase existing inequalities, suggesting that some elements may be useful for exploring how SSME uptake may be increased among underserved populations; for example, the refinement of the digital SSME package MyDESMOND for use amongst South Asian and Black ethnic minority groups using a Community-based Participatory Research model (NIHR205180).

The main secondary outcomes were rates of referral to, and attendance at, SSME programmes. Baseline SSME attendance was higher than expected in both the wait-list and immediate practice groups, with the high baseline attendance in the wait-list group (64%) (part of the control condition) leaving less room for improvement than anticipated. This could partly explain why the Embedding Package trial did not significantly impact upon SSME referral or attendance. Baseline attendance in the immediate group was 38%, similar to self-reported rates of attendance of 49% found in previous research [ 13 ]. Together, these estimates suggest that the rate of attendance reported by the National Diabetes Audit (11%) is not capturing the full picture of SSME referral and attendance in the UK [ 12 ], perhaps because the National Diabetes Audit data focus only on the 12 months after diagnosis.

When the RCT and 12-month observational follow-up data were combined, HbA1c and SSME attendance were improved in intervention compared with control conditions. The HbA1c difference was not clinically significant based on the minimum clinically important difference used in the RCT sample size calculation. While this may reflect that systemic changes, and subsequent clinical improvements, may require a longer period of time to be realised, factors other than the Embedding Package are likely to have contributed to these changes. Follow-up data collection occurred during the COVID-19 pandemic, which also exerted considerable pressure on primary care. The improvements in HbA1c and SSME attendance contrast with research reporting negative impacts of self-isolation [ 33 ] and the COVID-19 pandemic on diabetes self-management [ 34 ], but align with research suggesting that COVID-19-avoidant behaviours can improve diabetes self-management [ 35 ]. This also suggests that the shift to online T2DM SSME delivery and increased health messaging regarding T2DM as a risk factor for COVID-19 complications [ 36 ] are likely to have influenced HbA1c levels and SSME referral and engagement during the pandemic, particularly as online delivery has been found to be an effective means of diabetes self-management programmes [ 37 , 38 ] and warrants further exploration.

Limitations

Delays related to the feasibility study [ 15 ] reduced the time between feasibility study and RCT commencement, leaving insufficient time to implement a key lesson from the feasibility study. The feasibility study identified that the intervention should be implemented at provider-level, not at practice-level, but redesigning the RCT would have required either an extension to the programme timeframe or further redesign of the programme in order to gain back the time. This presents a substantial limitation, which was compounded by the need to put measures in place to avoid contamination whereby control practices received the intervention early via their SSME provider. Providers were asked to only target practices currently receiving the Embedding Package, which may have reduced engagement by adding complexity to provider activities.

Using HbA1c as a proxy for SSME attendance is also a limitation. While the intervention was intended to improve rates of SSME referral and attendance, using these indicators within a wait-list design introduced limitations because a person who attended SSME in a previous step was often ineligible to attend again under local commissioning rules. Furthermore, these measures are not routinely collected, compromising the validity of these measures as primary outcomes. HbA1c was chosen as a proxy as it was likely to change as a result of exposure to SSME [ 3 ], but being indirectly affected by referral to and attendance at SSME it may not be sensitive to change.

Additionally, it is possible that the premature cessation of Embedder activities due to the COVID-19 pandemic may have contributed to the limited effectiveness; this is unlikely, however, given the limited engagement of local stakeholders before the pandemic began.

Finally, statistical modelling presented issues related to missing data, model stability, and goodness of fit for binary variables SSME referral and SSME attendance, meaning that caution should be used in interpreting results.

The current study suggests that the Embedding Package is likely to have had little effect on HbA1c, SSME referrals and attendance, or other secondary outcomes. Slightly lower HbA1c was found among participants from ethnic minority groups during intervention than control conditions, but this was not accompanied by increased levels of SSME attendance. Additionally, longer term analyses showed some evidence of positive outcomes, suggesting that the study period may not have been long enough to see an impact. Social and practical barriers to effective implementation are likely to have contributed to the limited effectiveness of the programme.

Data availability

The data are not publicly available as they contain identifiable information.

Abbreviations

Clinical Commissioning Group

Interquartile Range

Intention-To-Treat

National Health Service

National Institute for Health and Care Excellence

Randomised Controlled Trial

Standard Deviation

Structured Self-Management Education

Type 2 Diabetes Mellitus

United Kingdom

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Acknowledgements

The authors would like to thank the following: Dr Caroline Kristunas for her contributions to the statistical analysis plan; Liz Shaw for her involvement in the intervention development phase; Dr Marian Carey, trial coordinator for the intervention development phase; Kyla Harrington, trial coordinator for the feasibility phase; Mike Bonar for developing the digital resources for the resulting Embedding study intervention package; Becky Pritchard, patient and public involvement (PPI) Lead; and the PPI representatives. LJG, MJD, and KK are supported by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration East Midlands (ARC EM) and Leicester NIHR Biomedical Research Centre (BRC). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.

This project received funding from the National Institute for Health Research Programme Grants for Applied Research programme. It will be published in Programme Grants for Applied Research ; Vol. XX, No. XX. Further project information can be found at the NIHR Journals Library website.

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Contributions

All authors contributed to the design of the Embedding Package and the RCT, and reviewed and approved the manuscript.MD was the Chief Investigator, who conceived the research idea and provided oversight and input into the programme of research. DB conducted statistical analysis of trial and follow-up data. AB and SD contributed to the study design. HE, NH and GM contributed to the research design, and led the intervention development phase and the integrated ethnography. AG was the programme manager. LJG and AK contributed to the trial design and data analysis. MH led and conducted the analysis for the qualitative sub-study. LH conducted the first part of the RCT. KK provided primary care expertise. AN contributed to developing and delivering the intervention. RP led the public involvement aspects of the research programme. SS contributed to development of the Embedding Package and provided SSME programme implementation expertise. JSp contributed to development of the Embedding Package and provided psychological and programme evaluation expertise. JSt contributed to development of the Embedding Package and provided expertise in diabetes SSME. JT conducted the intervention development research and the ethnography. LH conducted the ethnography.

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Correspondence to Melanie J Davies .

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Ethics approval and consent to participate.

This research was conducted in accordance with the Declaration of Helsinki. Ethical approval was sought and received from West Midlands - Edgbaston Research Ethics Committee (reference number: 18/WM/0036; approval date: 25 January 2018) and the Health Research Authority (reference number: 238291; approval date: 05 February 2018).

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Competing interests

University Hospitals of Leicester NHS Trust (MD, AG, MH, KK, AN, RP, SS) receives not-for-profit income through licensing fees to support implementation of a diabetes structured education program (DESMOND) in Clinical Commissioning Groups in the UK, Ireland, and Australia; all payments are made to UHL NHS Trust. JSt manages the licensing, via University of Warwick, for a diabetes structured education programme (Diabetes Manual) that is commercially available; royalties have been paid to University of Warwick but not to JS personally. DB has undertaken paid consultancy work for the University of Leicester for this programme and other projects. AB has received funding for projects from the European Union and National Institute for Health Research. GM has received consulting fees from The Health Foundation, and participated in or chaired advisory groups and steering groups for work funded by The Health Foundation, City University, National Institute for Health Research, and Leicester Centre for Ethnic Health Research. GM has also been a Trustee for the Foundation for the Sociology of Health and Illness and a member of the National Institute for Health Research NETSCC National Stakeholder Advisory Group. SS has received funding for projects from the National Institute of Health Research. The other authors declare that they have no competing interests.

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Davies, M.J., Bodicoat, D.H., Brennan, A. et al. Uptake of self-management education programmes for people with type 2 diabetes in primary care through the embedding package: a cluster randomised control trial and ethnographic study. BMC Prim. Care 25 , 136 (2024). https://doi.org/10.1186/s12875-024-02372-x

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Breast cancer screening motivation and behaviours of women aged over 75 years: a scoping review

• Virginia Dickson-Swift 1 ,
• Joanne Adams 1 ,
• Evelien Spelten 1 ,
• Irene Blackberry 2 ,
• Carlene Wilson 3 , 4 , 5 &
• Eva Yuen 3 , 6 , 7 , 8  

BMC Women's Health volume  24 , Article number:  256 ( 2024 ) Cite this article

Metrics details

This scoping review aimed to identify and present the evidence describing key motivations for breast cancer screening among women aged ≥ 75 years. Few of the internationally available guidelines recommend continued biennial screening for this age group. Some suggest ongoing screening is unnecessary or should be determined on individual health status and life expectancy. Recent research has shown that despite recommendations regarding screening, older women continue to hold positive attitudes to breast screening and participate when the opportunity is available.

All original research articles that address motivation, intention and/or participation in screening for breast cancer among women aged ≥ 75 years were considered for inclusion. These included articles reporting on women who use public and private breast cancer screening services and those who do not use screening services (i.e., non-screeners).

The Joanna Briggs Institute (JBI) methodology for scoping reviews was used to guide this review. A comprehensive search strategy was developed with the assistance of a specialist librarian to access selected databases including: the Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medline, Web of Science and PsychInfo. The review was restricted to original research studies published since 2009, available in English and focusing on high-income countries (as defined by the World Bank). Title and abstract screening, followed by an assessment of full-text studies against the inclusion criteria was completed by at least two reviewers. Data relating to key motivations, screening intention and behaviour were extracted, and a thematic analysis of study findings undertaken.

A total of fourteen (14) studies were included in the review. Thematic analysis resulted in identification of three themes from included studies highlighting that decisions about screening were influenced by: knowledge of the benefits and harms of screening and their relationship to age; underlying attitudes to the importance of cancer screening in women's lives; and use of decision aids to improve knowledge and guide decision-making.

The results of this review provide a comprehensive overview of current knowledge regarding the motivations and screening behaviour of older women about breast cancer screening which may inform policy development.

Peer Review reports

Introduction

Breast cancer is now the most commonly diagnosed cancer in the world overtaking lung cancer in 2021 [ 1 ]. Across the globe, breast cancer contributed to 25.8% of the total number of new cases of cancer diagnosed in 2020 [ 2 ] and accounts for a high disease burden for women [ 3 ]. Screening for breast cancer is an effective means of detecting early-stage cancer and has been shown to significantly improve survival rates [ 4 ]. A recent systematic review of international screening guidelines found that most countries recommend that women have biennial mammograms between the ages of 40–70 years [ 5 ] with some recommending that there should be no upper age limit [ 6 , 7 , 8 , 9 , 10 , 11 , 12 ] and others suggesting that benefits of continued screening for women over 75 are not clear [ 13 , 14 , 15 ].

Some guidelines suggest that the decision to end screening should be determined based on the individual health status of the woman, their life expectancy and current health issues [ 5 , 16 , 17 ]. This is because the benefits of mammography screening may be limited after 7 years due to existing comorbidities and limited life expectancy [ 18 , 19 , 20 , 21 ], with some jurisdictions recommending breast cancer screening for women ≥ 75 years only when life expectancy is estimated as at least 7–10 years [ 22 ]. Others have argued that decisions about continuing with screening mammography should depend on individual patient risk and health management preferences [ 23 ]. This decision is likely facilitated by a discussion between a health care provider and patient about the harms and benefits of screening outside the recommended ages [ 24 , 25 ]. While mammography may enable early detection of breast cancer, it is clear that false-positive results and overdiagnosis Footnote 1 may occur. Studies have estimated that up to 25% of breast cancer cases in the general population may be over diagnosed [ 26 , 27 , 28 ].

The risk of being diagnosed with breast cancer increases with age and approximately 80% of new cases of breast cancer in high-income countries are in women over the age of 50 [ 29 ]. The average age of first diagnosis of breast cancer in high income countries is comparable to that of Australian women which is now 61 years [ 2 , 4 , 29 ]. Studies show that women aged ≥ 75 years generally have positive attitudes to mammography screening and report high levels of perceived benefits including early detection of breast cancer and a desire to stay healthy as they age [ 21 , 30 , 31 , 32 ]. Some women aged over 74 participate, or plan to participate, in screening despite recommendations from health professionals and government guidelines advising against it [ 33 ]. Results of a recent review found that knowledge of the recommended guidelines and the potential harms of screening are limited and many older women believed that the benefits of continued screening outweighed the risks [ 30 ].

Very few studies have been undertaken to understand the motivations of women to screen or to establish screening participation rates among women aged ≥ 75 and older. This is surprising given that increasing age is recognised as a key risk factor for the development of breast cancer, and that screening is offered in many locations around the world every two years up until 74 years. The importance of this topic is high given the ambiguity around best practice for participation beyond 74 years. A preliminary search of Open Science Framework, PROSPERO, Cochrane Database of Systematic Reviews and JBI Evidence Synthesis in May 2022 did not locate any reviews on this topic.

This scoping review has allowed for the mapping of a broad range of research to explore the breadth and depth of the literature, summarize the evidence and identify knowledge gaps [ 34 , 35 ]. This information has supported the development of a comprehensive overview of current knowledge of motivations of women to screen and screening participation rates among women outside the targeted age of many international screening programs.

Materials and methods

Research question.

The research question for this scoping review was developed by applying the Population—Concept—Context (PCC) framework [ 36 ]. The current review addresses the research question “What research has been undertaken in high-income countries (context) exploring the key motivations to screen for breast cancer and screening participation (concepts) among women ≥ 75 years of age (population)?

Eligibility criteria

Participants.

Women aged ≥ 75 years were the key population. Specifically, motivations to screen and screening intention and behaviour and the variables that discriminate those who screen from those who do not (non-screeners) were utilised as the key predictors and outcomes respectively.

From a conceptual perspective it was considered that motivation led to behaviour, therefore articles that described motivation and corresponding behaviour were considered. These included articles reporting on women who use public (government funded) and private (fee for service) breast cancer screening services and those who do not use screening services (i.e., non-screeners).

The scope included high-income countries using the World Bank definition [ 37 ]. These countries have broadly similar health systems and opportunities for breast cancer screening in both public and private settings.

Types of sources

All studies reporting original research in peer-reviewed journals from January 2009 were eligible for inclusion, regardless of design. This date was selected due to an evaluation undertaken for BreastScreen Australia recommending expansion of the age group to include 70–74-year-old women [ 38 ]. This date was also indicative of international debate regarding breast cancer screening effectiveness at this time [ 39 , 40 ]. Reviews were also included, regardless of type—scoping, systematic, or narrative. Only sources published in English and available through the University’s extensive research holdings were eligible for inclusion. Ineligible materials were conference abstracts, letters to the editor, editorials, opinion pieces, commentaries, newspaper articles, dissertations and theses.

This scoping review was registered with the Open Science Framework database ( https://osf.io/fd3eh ) and followed Joanna Briggs Institute (JBI) methodology for scoping reviews [ 35 , 36 ]. Although ethics approval is not required for scoping reviews the broader study was approved by the University Ethics Committee (approval number HEC 21249).

Search strategy

A pilot search strategy was developed in consultation with an expert health librarian and tested in MEDLINE (OVID) and conducted on 3 June 2022. Articles from this pilot search were compared with seminal articles previously identified by the members of the team and used to refine the search terms. The search terms were then searched as both keywords and subject headings (e.g., MeSH) in the titles and abstracts and Boolean operators employed. A full MEDLINE search was then carried out by the librarian (see Table  1 ). This search strategy was adapted for use in each of the following databases: Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medical Literature Analysis and Retrieval System Online (MEDLINE), Web of Science and PsychInfo databases. The references of included studies have been hand-searched to identify any additional evidence sources.

Study/source of evidence selection

Following the search, all identified citations were collated and uploaded into EndNote v.X20 (Clarivate Analytics, PA, USA) and duplicates removed. The resulting articles were then imported into Covidence – Cochrane’s systematic review management software [ 41 ]. Duplicates were removed once importation was complete, and title and abstract screening was undertaken against the eligibility criteria. A sample of 25 articles were assessed by all reviewers to ensure reliability in the application of the inclusion and exclusion criteria. Team discussion was used to ensure consistent application. The Covidence software supports blind reviewing with two reviewers required at each screening phase. Potentially relevant sources were retrieved in full text and were assessed against the inclusion criteria by two independent reviewers. Conflicts were flagged within the software which allows the team to discuss those that have disagreements until a consensus was reached. Reasons for exclusion of studies at full text were recorded and reported in the scoping review. The Preferred Reporting Items of Systematic Reviews extension for scoping reviews (PRISMA-ScR) checklist was used to guide the reporting of the review [ 42 ] and all stages were documented using the PRISMA-ScR flow chart [ 42 ].

Data extraction

A data extraction form was created in Covidence and used to extract study characteristics and to confirm the study’s relevance. This included specific details such as article author/s, title, year of publication, country, aim, population, setting, data collection methods and key findings relevant to the review question. The draft extraction form was modified as needed during the data extraction process.

Data analysis and presentation

Extracted data were summarised in tabular format (see Table  2 ). Consistent with the guidelines for the effective reporting of scoping reviews [ 43 ] and the JBI framework [ 35 ] the final stage of the review included thematic analysis of the key findings of the included studies. Study findings were imported into QSR NVivo with coding of each line of text. Descriptive codes reflected key aspects of the included studies related to the motivations and behaviours of women > 75 years about breast cancer screening.

In line with the reporting requirements for scoping reviews the search results for this review are presented in Fig.  1 [ 44 ].

PRISMA Flowchart. From: Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ 2021;372:n71. https://doi.org/10.1136/bmj.n71

A total of fourteen [ 14 ] studies were included in the review with studies from the following countries, US n  = 12 [ 33 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 ], UK n  = 1 [ 23 ] and France n  = 1 [ 56 ]. Sample sizes varied, with most containing fewer than 50 women ( n  = 8) [ 33 , 45 , 46 , 48 , 51 , 52 , 55 ]. Two had larger samples including a French study with 136 women (a sub-set of a larger sample) [ 56 ], and one mixed method study in the UK with a sample of 26 women undertaking interviews and 479 women completing surveys [ 23 ]. One study did not report exact numbers [ 50 ]. Three studies [ 47 , 53 , 54 ] were undertaken by a group of researchers based in the US utilising the same sample of women, however each of the papers focused on different primary outcomes. The samples in the included studies were recruited from a range of locations including primary medical care clinics, specialist medical clinics, University affiliated medical clinics, community-based health centres and community outreach clinics [ 47 , 53 , 54 ].

Data collection methods varied and included: quantitative ( n  = 8), qualitative ( n  = 5) and mixed methods ( n  = 1). A range of data collection tools and research designs were utilised; pre/post, pilot and cross-sectional surveys, interviews, and secondary analysis of existing data sets. Seven studies focused on the use of a Decision Aids (DAs), either in original or modified form, developed by Schonberg et al. [ 55 ] as a tool to increase knowledge about the harms and benefits of screening for older women [ 45 , 47 , 48 , 49 , 52 , 54 , 55 ]. Three studies focused on intention to screen [ 33 , 53 , 56 ], two on knowledge of, and attitudes to, screening [ 23 , 46 ], one on information needs relating to risks and benefits of screening discontinuation [ 51 ], and one on perceptions about discontinuation of screening and impact of social interactions on screening [ 50 ].

The three themes developed from the analysis of the included studies highlighted that decisions about screening were primarily influenced by: (1) knowledge of the benefits and harms of screening and their relationship to age; (2) underlying attitudes to the importance of cancer screening in women's lives; and (3) exposure to decision aids designed to facilitate informed decision-making. Each of these themes will be presented below drawing on the key findings of the appropriate studies. The full dataset of extracted data can be found in Table  2 .

Knowledge of the benefits and harms of screening ≥ 75 years

The decision to participate in routine mammography is influenced by individual differences in cognition and affect, interpersonal relationships, provider characteristics, and healthcare system variables. Women typically perceive mammograms as a positive, beneficial and routine component of care [ 46 ] and an important aspect of taking care of themselves [ 23 , 46 , 49 ]. One qualitative study undertaken in the US showed that few women had discussed mammography cessation or the potential harms of screening with their health care providers and some women reported they would insist on receiving mammography even without a provider recommendation to continue screening [ 46 ].

Studies suggested that ageing itself, and even poor health, were not seen as reasonable reasons for screening cessation. For many women, guidance from a health care provider was deemed the most important influence on decision-making [ 46 ]. Preferences for communication about risk and benefits were varied with one study reporting women would like to learn more about harms and risks and recommended that this information be communicated via physicians or other healthcare providers, included in brochures/pamphlets, and presented outside of clinical settings (e.g., in community-based seniors groups) [ 51 ]. Others reported that women were sometimes sceptical of expert and government recommendations [ 33 ] although some were happy to participate in discussions with health educators or care providers about breast cancer screening harms and benefits and potential cessation [ 52 ].

Underlying attitudes to the importance of cancer screening at and beyond 75 years

Included studies varied in describing the importance of screening, with some attitudes based on past attendance and some based on future intentions to screen. Three studies reported findings indicating that some women intended to continue screening after 75 years of age [ 23 , 45 , 46 ], with one study in the UK reporting that women supported an extension of the automatic recall indefinitely, regardless of age or health status. In this study, failure to invite older women to screen was interpreted as age discrimination [ 23 ]. The desire to continue screening beyond 75 was also highlighted in a study from France that found that 60% of the women ( n  = 136 aged ≥ 75) intended to pursue screening in the future, and 27 women aged ≥ 75, who had never undergone mammography previously (36%), intended to do so in the future [ 56 ]. In this same study, intentions to screen varied significantly [ 56 ]. There were no sociodemographic differences observed between screened and unscreened women with regard to level of education, income, health risk behaviour (smoking, alcohol consumption), knowledge about the importance and the process of screening, or psychological features (fear of the test, fear of the results, fear of the disease, trust in screening impact) [ 56 ]. Further analysis showed that three items were statistically correlated with a higher rate of attendance at screening: (1) screening was initiated by a physician; (2) the women had a consultation with a gynaecologist during the past 12 months; and (3) the women had already undergone at least five screening mammograms. Analysis highlighted that although average income, level of education, psychological features or other types of health risk behaviours did not impact screening intention, having a mammogram previously impacted likelihood of ongoing screening. There was no information provided that explained why women who had not previously undergone screening might do so in the future.

A mixed methods study in the UK reported similar findings [ 23 ]. Utilising interviews ( n  = 26) and questionnaires ( n  = 479) with women ≥ 70 years (median age 75 years) the overwhelming result (90.1%) was that breast screening should be offered to all women indefinitely regardless of age, health status or fitness [ 23 ], and that many older women were keen to continue screening. Both the interview and survey data confirmed women were uncertain about eligibility for breast screening. The survey data showed that just over half the women (52.9%) were unaware that they could request mammography or knew how to access it. Key reasons for screening discontinuation were not being invited for screening (52.1%) and not knowing about self-referral (35.1%).

Women reported that not being invited to continue screening sent messages that screening was no longer important or required for this age group [ 23 ]. Almost two thirds of the women completing the survey (61.6%) said they would forget to attend screening without an invitation. Other reasons for screening discontinuation included transport difficulties (25%) and not wishing to burden family members (24.7%). By contrast, other studies have reported that women do not endorse discontinuation of screening mammography due to advancing age or poor health, but some may be receptive to reducing screening frequency on recommendation from their health care provider [ 46 , 51 ].

Use of Decision Aids (DAs) to improve knowledge and guide screening decision-making

Many women reported poor knowledge about the harms and benefits of screening with studies identifying an important role for DAs. These aids have been shown to be effective in improving knowledge of the harms and benefits of screening [ 45 , 54 , 55 ] including for women with low educational attainment; as compared to women with high educational attainment [ 47 ]. DAs can increase knowledge about screening [ 47 , 49 ] and may decrease the intention to continue screening after the recommended age [ 45 , 52 , 54 ]. They can be used by primary care providers to support a conversation about breast screening intention and reasons for discontinuing screening. In one pilot study undertaken in the US using a DA, 5 of the 8 women (62.5%) indicated they intended to continue to receive mammography; however, 3 participants planned to get them less often [ 45 ]. When asked whether they thought their physician would want them to get a mammogram, 80% said “yes” on pre-test; this figure decreased to 62.5% after exposure to the DA. This pilot study suggests that the use of a decision-aid may result in fewer women ≥ 75 years old continuing to screen for breast cancer [ 45 ].

Similar findings were evident in two studies drawing on the same data undertaken in the US [ 48 , 53 ]. Using a larger sample ( n  = 283), women’s intentions to screen prior to a visit with their primary care provider and then again after exposure to the DA were compared. Results showed that 21.7% of women reduced their intention to be screened, 7.9% increased their intentions to be screened, and 70.4% did not change. Compared to those who had no change or increased their screening intentions, women who had a decrease in screening intention were significantly less likely to receive screening after 18 months. Generally, studies have shown that women aged 75 and older find DAs acceptable and helpful [ 47 , 48 , 49 , 55 ] and using them had the potential to impact on a women’s intention to screen [ 55 ].

Cadet and colleagues [ 49 ] explored the impact of educational attainment on the use of DAs. Results highlight that education moderates the utility of these aids; women with lower educational attainment were less likely to understand all the DA’s content (46.3% vs 67.5%; P < 0.001); had less knowledge of the benefits and harms of mammography (adjusted mean ± standard error knowledge score, 7.1 ± 0.3 vs 8.1 ± 0.3; p < 0.001); and were less likely to have their screening intentions impacted (adjusted percentage, 11.4% vs 19.4%; p  = 0.01).

This scoping review summarises current knowledge regarding motivations and screening behaviours of women over 75 years. The findings suggest that awareness of the importance of breast cancer screening among women aged ≥ 75 years is high [ 23 , 46 , 49 ] and that many women wish to continue screening regardless of perceived health status or age. This highlights the importance of focusing on motivation and screening behaviours and the multiple factors that influence ongoing participation in breast screening programs.

The generally high regard attributed to screening among women aged ≥ 75 years presents a complex challenge for health professionals who are focused on potential harm (from available national and international guidelines) in ongoing screening for women beyond age 75 [ 18 , 20 , 57 ]. Included studies highlight that many women relied on the advice of health care providers regarding the benefits and harms when making the decision to continue breast screening [ 46 , 51 , 52 ], however there were some that did not [ 33 ]. Having a previous pattern of screening was noted as being more significant to ongoing intention than any other identified socio-demographic feature [ 56 ]. This is perhaps because women will not readily forgo health care practices that they have always considered important and that retain ongoing importance for the broader population.

For those women who had discontinued screening after the age of 74 it was apparent that the rationale for doing so was not often based on choice or receipt of information, but rather on factors that impact decision-making in relation to screening. These included no longer receiving an invitation to attend, transport difficulties and not wanting to be a burden on relatives or friends [ 23 , 46 , 51 ]. Ongoing receipt of invitations to screen was an important aspect of maintaining a capacity to choose [ 23 ]. This was particularly important for those women who had been regular screeners.

Women over 75 require more information to make decisions regarding screening [ 23 , 52 , 54 , 55 ], however health care providers must also be aware that the element of choice is important for older women. Having a capacity to choose avoids any notion of discrimination based on age, health status, gender or sociodemographic difference and acknowledges the importance of women retaining control over their health [ 23 ]. It was apparent that some women would choose to continue screening at a reduced frequency if this option was available and that women should have access to information facilitating self-referral [ 23 , 45 , 46 , 51 , 56 ].

Decision-making regarding ongoing breast cancer screening has been facilitated via the use of Decision Aids (DAs) within clinical settings [ 54 , 55 ]. While some studies suggest that women will make a decision regardless of health status, the use of DAs has impacted women’s decision to screen. While this may have limited benefit for those of lower educational attainment [ 48 ] they have been effective in improving knowledge relating to harms and benefits of screening particularly where they have been used to support a conversation with women about the value of screening [ 54 , 55 , 56 ].

Women have identified challenges in engaging in conversations with health care providers regarding ongoing screening, because providers frequently draw on projections of life expectancy and over-diagnosis [ 17 , 51 ]. As a result, these conversations about screening after age 75 years often do not occur [ 46 ]. It is likely that health providers may need more support and guidance in leading these conversations. This may be through the use of DAs or standardised checklists. It may be possible to incorporate these within existing health preventive measures for this age group. The potential for advice regarding ongoing breast cancer screening to be available outside of clinical settings may provide important pathways for conversations with women regarding health choices. Provision of information and advice in settings such as community based seniors groups [ 51 ] offers a potential platform to broaden conversations and align sources of information, not only with health professionals but amongst women themselves. This may help to address any misconception regarding eligibility and access to services [ 23 ]. It may also be aligned with other health promotion and lifestyle messages provided to this age group.

Limitations of the review

The searches that formed the basis of this review were carried in June 2022. Although the search was comprehensive, we have only captured those studies that were published in the included databases from 2009. There may have been other studies published outside of these periods. We also limited the search to studies published in English with full-text availability.

The emphasis of a scoping review is on comprehensive coverage and synthesis of the key findings, rather than on a particular standard of evidence and, consequently a quality assessment of the included studies was not undertaken. This has resulted in the inclusion of a wide range of study designs and data collection methods. It is important to note that three studies included in the review drew on the same sample of women (283 over > 75)[ 49 , 53 , 54 ]. The results of this review provide valuable insights into motivations and behaviours for breast cancer screening for older women, however they should be interpreted with caution given the specific methodological and geographical limitations.

Conclusion and recommendations

This scoping review highlighted a range of key motivations and behaviours in relation to breast cancer screening for women ≥ 75 years of age. The results provide some insight into how decisions about screening continuation after 74 are made and how informed decision-making can be supported. Specifically, this review supports the following suggestions for further research and policy direction:

Further research regarding breast cancer screening motivations and behaviours for women over 75 would provide valuable insight for health providers delivering services to women in this age group.

Health providers may benefit from the broader use of decision aids or structured checklists to guide conversations with women over 75 regarding ongoing health promotion/preventive measures.

Providing health-based information in non-clinical settings frequented by women in this age group may provide a broader reach of information and facilitate choices. This may help to reduce any perception of discrimination based on age, health status or socio-demographic factors.

Availability of data and materials

All data generated or analysed during this study is included in this published article (see Table  2 above).

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Acknowledgements

We would like to acknowledge Ange Hayden-Johns (expert librarian) who assisted with the development of the search criteria and undertook the relevant searches and Tejashree Kangutkar who assisted with some of the Covidence work.

This work was supported by funding from the Australian Government Department of Health and Aged Care (ID: Health/20–21/E21-10463).

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VDS conceived and designed the scoping review. VDS & JA developed the search strategy with librarian support, and all authors (VDS, JA, ES, IB, CW, EY) participated in the screening and data extraction stages and assisted with writing the review. All authors provided editorial support and read and approved the final manuscript prior to submission.

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Dickson-Swift, V., Adams, J., Spelten, E. et al. Breast cancer screening motivation and behaviours of women aged over 75 years: a scoping review. BMC Women's Health 24 , 256 (2024). https://doi.org/10.1186/s12905-024-03094-z

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How phenomenology can help us learn from the experiences of others

Brian e. neubauer.

1 Department of Medicine, Uniformed Services University, Bethesda, MD USA

2 General Internal Medicine Service, Walter Reed National Military Medical Center, Bethesda, MD USA

Catherine T. Witkop

3 Department of Preventative Medicine and Biostatistics, Uniformed Services Medical Center, Bethesda, MD USA

Lara Varpio

Introduction.

As a research methodology, phenomenology is uniquely positioned to help health professions education (HPE) scholars learn from the experiences of others. Phenomenology is a form of qualitative research that focuses on the study of an individual’s lived experiences within the world. Although it is a powerful approach for inquiry, the nature of this methodology is often intimidating to HPE researchers. This article aims to explain phenomenology by reviewing the key philosophical and methodological differences between two of the major approaches to phenomenology: transcendental and hermeneutic. Understanding the ontological and epistemological assumptions underpinning these approaches is essential for successfully conducting phenomenological research.

This review provides an introduction to phenomenology and demonstrates how it can be applied to HPE research. We illustrate the two main sub-types of phenomenology and detail their ontological, epistemological, and methodological differences.

Conclusions

Phenomenology is a powerful research strategy that is well suited for exploring challenging problems in HPE. By building a better understanding of the nature of phenomenology and working to ensure proper alignment between the specific research question and the researcher’s underlying philosophy, we hope to encourage HPE scholars to consider its utility when addressing their research questions.

A Qualitative Space highlights research approaches that push readers and scholars deeper into qualitative methods and methodologies. Contributors to A Qualitative Space may: advance new ideas about qualitative methodologies, methods, and/or techniques; debate current and historical trends in qualitative research; craft and share nuanced reflections on how data collection methods should be revised or modified; reflect on the epistemological bases of qualitative research; or argue that some qualitative practices should end. Share your thoughts on Twitter using the hashtag: #aqualspace

Human beings, who are almost unique in having the ability to learn from the experience of others, are also remarkable for their apparent disinclination to do so.—Douglas Adams

Despite the fact that humans are one of few animals who can learn from the experiences of others, we are often loath to do so. Perhaps this is because we assume that similar circumstances could never befall us. Perhaps this is because we assume that, if placed in the same situation, we would make wiser decisions. Perhaps it is because we assume the subjective experience of an individual is not as reliably informative as objective data collected from external reality. Regardless of the assumptions grounding this apprehension, it is essential for scholars to learn from the experiences of others. In fact, it is a foundational premise of research. Research involves the detailed study of a subject (i. e., an individual, groups of individuals, societies, or objects) to discover information or to achieve a new understanding of the subject [ 1 ]. Such detailed study often requires understanding the experiences of others so that we can glean new insights about a particular phenomenon. Scholars in health professions education (HPE) are savvy to the need to learn from the experiences of others. To maximize the effectiveness of feedback, of workplace-based learning, of clinical reasoning, or of any other of a myriad of phenomena, HPE researchers need to be able to carefully explore and learn from the experiences of others. What often curtails these efforts is a lack of methodology. In other words: HPE researchers need to know how to learn from the experiences of others.

Phenomenology is a qualitative research approach that is uniquely positioned to support this inquiry. However, as an approach for engaging in HPE research, phenomenology does not have a strong following. It is easy to see why: To truly understand phenomenology requires developing an appreciation for the philosophies that underpin it. Those philosophies theorize the meaning of human experience. In other words, engaging in phenomenological research requires the scholar to become familiar with the philosophical moorings of our interpretations of human experience. This may be a daunting task, but Douglas Adams never said learning from the experiences of others would be easy.

The questions that phenomenology can answer, and the insights this kind of research can provide, are of foundational importance to HPE: What is the experience of shame and the impact of that experience for medical learners [ 2 ]? What does it mean to be an empathetic clinician [ 3 ]? What is the medical learner’s experience of failure on high stakes exams [ 4 ]? How do experienced clinicians learn to communicate their clinical reasoning in professional practice [ 5 ]? Answers to such questions constitute the underpinnings of our field. To answer such questions, we can use phenomenology to learn from the experiences of others.

In this manuscript, we delve into the philosophies and methodologies of two varieties of phenomenology: hermeneutic and transcendental. Our goal is not to simplify the complexities of phenomenology, nor to argue that all HPE researchers should use phenomenology. Instead, we suggest that phenomenology is a valuable approach to research that needs to have a place in HPE’s body of research. We will place these two approaches in the context of their philosophical roots to illustrate the similarities and differences between these ways of engaging in phenomenological research. In so doing, we hope to encourage HPE researchers to thoughtfully engage in phenomenology when their research questions necessitate this research approach.

What is phenomenology?

In simple terms, phenomenology can be defined as an approach to research that seeks to describe the essence of a phenomenon by exploring it from the perspective of those who have experienced it [ 6 ]. The goal of phenomenology is to describe the meaning of this experience—both in terms of what was experienced and how it was experienced [ 6 ]. There are different kinds of phenomenology, each rooted in different ways of conceiving of the what and how of human experience. In other words, each approach of phenomenology is rooted in a different school of philosophy. To choose a phenomenological research methodology requires the scholar to reflect on the philosophy they embrace. Given that there are many different philosophies that a scientist can embrace, it is not surprising that there is broad set of phenomenological traditions that a researcher can draw from. In this manuscript, we highlight the transcendental and the hermeneutic approaches to phenomenology, but a broader phenomenological landscape exists. For instance, the Encyclopedia of Phenomenology, published in 1997, features articles on seven different types of phenomenology [ 7 ]. More contemporary traditions have also been developed that bridge the transcendental/hermeneutic divide. Several of these traditions are detailed in Tab.  1 [ 8 – 10 ].

Description of three contemporary approaches to phenomenology

To understand any of these approaches to phenomenology, it is useful to remember that most approaches hold a similar definition of phenomenology’s object of study. Phenomenology is commonly described as the study of phenomena as they manifest in our experience, of the way we perceive and understand phenomena, and of the meaning phenomena have in our subjective experience [ 11 ]. More simply stated, phenomenology is the study of an individual’s lived experience of the world [ 12 ]. By examining an experience as it is subjectively lived, new meanings and appreciations can be developed to inform, or even re-orient, how we understand that experience [ 13 ].

From this shared understanding, we now address how transcendental (descriptive) phenomenology and hermeneutic (interpretive) phenomenology approach this study in different ways. These approaches are summarized in Tab.  2 .

Comparison of transcendental and hermeneutic phenomenology

Transcendental phenomenology

Phenomenology originates in philosophical traditions that evolved over centuries; however, most historians credit Edmund Husserl for defining phenomenology in the early 20th century [ 14 ]. Understanding some of Husserl’s academic history can provide insight into his transcendental approach to phenomenology. Husserl’s initial work focused on mathematics as the object of study [ 15 ], but then moved to examine other phenomena. Husserl’s approach to philosophy sought to equally value both objective and subjective experiences, with his body of work ‘culminating in his interest in “pure phenomenology” or working to find a universal foundation of philosophy and science [ 13 ].’ Husserl rejected positivism’s absolute focus on objective observations of external reality, and instead argued that phenomena as perceived by the individual’s consciousness should be the object of scientific study. Thus, Husserl contended that no assumptions should inform phenomenology’s inquiry; no philosophical or scientific theory, no deductive logic procedures, and no other empirical science or psychological speculations should inform the inquiry. Instead, the focus should be on what is given directly to an individual’s intuition [ 16 ]. As Staiti recently argued, this attitude towards phenomenology is akin to that of ‘a natural scientist who has just discovered a previously unknown dimension of reality [ 17 ].’ This shift in focus requires the researcher to return ‘to the self to discover the nature and meaning of things [ 18 ].’ As Husserl asserted: ‘Ultimately, all genuine and, in particular, all scientific knowledge, rests on inner evidence [ 19 ].’ Inner evidence—that is, what appears in consciousness—is where a phenomenon is to be studied. What this means for Husserl is that subjective and objective knowledge are intimately intertwined. To understand the reality of a phenomenon is to understand the phenomenon as it is lived by a person. This lived experience is, for Husserl, a dimension of being that had yet to be discovered [ 17 ]. For Husserl, phenomenology was rooted in an epistemological attitude; for him, the critical question of a phenomenological investigation was ‘What is it for an individual to know or to be conscious of a phenomenon [ 20 ]?’ In Husserl’s conception of phenomenology, any experienced phenomenon could be the object of study thereby pushing analysis beyond mere sensory perception (i. e. what I see, hear, touch) to experiences of thought, memory, imagination, or emotion [ 21 ].

Husserl contended that a lived experience of a phenomenon had features that were commonly perceived by individuals who had experienced the phenomenon. These commonly perceived features—or universal essences—can be identified to develop a generalizable description. The essences of a phenomenon, according to Husserl, represented the true nature of that phenomenon. The challenge facing the researcher engaging in Husserl’s phenomenology, then, is:

To describe things in themselves, to permit what is before one to enter consciousness and be understood in its meanings and essences in the light of intuition and self-reflection. The process involves a blending of what is really present with what is imagined as present from the vantage point of possible meanings; thus, a unity of the real and the ideal [ 18 ] .

In other words, the challenge is to engage in the study of a person’s lived experience of a phenomenon that highlights the universal essences of that phenomenon [ 22 ]. This requires the researcher to suspend his/her own attitudes, beliefs, and suppositions in order to focus on the participants’ experience of the phenomenon and identify the essences of the phenomenon. One of Husserl’s great contributions to philosophy and science is the method he developed that enables researchers ‘to suspend the natural attitude as well as the naïve understanding of what we call the human mind and to disclose the realm of transcendental subjectivity as a new field of inquiry [ 17 ].’

In Husserl’s’ transcendental phenomenology (also sometimes referred to as the descriptive approach), the researcher’s goal is to achieve transcendental subjectivity —a state wherein ‘the impact of the researcher on the inquiry is constantly assessed and biases and preconceptions neutralized, so that they do not influence the object of study [ 22 ].’ The researcher is to stand apart, and not allow his/her subjectivity to inform the descriptions offered by the participants. This lived dimension of experience is best approached by the researcher who can achieve the state of the transcendental I —a state wherein the objective researcher moves from the participants’ descriptions of facts of the lived experience, to universal essences of the phenomenon at which point consciousness itself could be grasped [ 23 ]. In the state of the transcendental I , the researcher is able to access the participants’ experience of the phenomenon pre-reflectively—that is ‘without resorting to categorization on conceptualization, and quite often includes what is taken for granted or those things that are common sense [ 13 ].’ The transcendental I brings no definitions, expectations, assumption or hypotheses to the study; instead, in this state, the researcher assumes the position of a  tabula rasa, a blank slate, that uses participants’ experiences to develop an understanding of the essence of a phenomenon.

This state is achieved via a series of reductions. The first reduction, referred to as the transcendental stage , requires transcendence from the natural attitude of everyday life through epoche , also called the process of bracketing . This is the process through which the researchers set aside—or bracket off as one would in a mathematical equation—previous understandings, past knowledge, and assumptions about the phenomenon of interest. The previous understandings that must be set aside include a wide range of sources including: scientific theories, knowledge, or explanation; truth or falsity of claims made by participants; and personal views and experiences of the researcher [ 24 ]. In the second phase, transcendental-phenomenological reduction , each participant’s experience is considered individually and a complete description of the phenomenon’s meanings and essences is constructed [ 18 ]. Next is reduction via imaginative variation wherein all the participants’ descriptions of conscious experience are distilled to a unified synthesis of essences through the process of free variation [ 25 ]. This process relies on intuition and requires imagining multiple variations of the phenomenon in order to arrive at the essences of the phenomenon [ 25 ]. These essences become the foundation for all knowledge about the phenomenon.

The specific processes followed to realize these reductions vary across researchers engaging in transcendental phenomenology. One commonly used transcendental phenomenological method is that of psychologist Clark Moustakas, and other approaches include the works of: Colaizzi [ 26 ], Giorgi [ 27 ], and Polkinghorne [ 28 ]. Regardless of the approach used, to engage rigorously in transcendental phenomenology, the researcher must be vigilant in his/her bracketing work so that the researcher’s individual subjectivity does not bias data analysis and interpretations. This is the challenge of reaching the state of the transcendental I where the researcher’s own interpretations, perceptions, categories, etc. do not influence the processes of reduction. It is important to note that modern philosophers continue to wrestle with Husserl’s notions of bracketing. If bracketing is successfully achieved, the researcher sets aside the world and the entirety of its content—including the researcher’s physical body [ 17 ]. While dedication to this bracketing is challenging to maintain, Husserl asserts that it is necessary. Suspending reliance on and foundations in physical reality is the only way to abandon our human experiences in such a way as to find the transcendent I. Researchers might borrow [ 29 ] practices from other qualitative research methods to achieve this goal. For instance, a study could be designed to have multiple researchers triangulate [ 30 ] their reductions to confirm appropriate bracketing was maintained. Alternatively, a study could involve validation of data [ 18 ] via member checking [ 31 ] to ensure that the identified essences resonated with the participants’ experiences.

Husserl’s transcendental phenomenology has been employed by HPE researchers. For example, in 2012, Tavakol et al. studied medical students’ understanding of empathy by engaging in transcendental phenomenological research [ 32 ]. The authors note that medial students’ loss of empathy as they transition from pre-clinical to clinical training is well documented in the medical literature [ 33 ], and has been found to negatively impact patients and the quality of healthcare provided [ 34 ]. Tavakol et al. [ 32 ] used a descriptive phenomenological approach (i. e. using the methodology of Colaizzi and Giorgi) to report on the phenomenon of empathy as experienced by medical students during the course of their training. The authors identified two key factors impacting empathic ability: innate capacity for empathy and barriers to displaying empathy [ 32 ].

Hermeneutic phenomenology

Hermeneutic phenomenology, also known as interpretive phenomenology, originates from the work of Martin Heidegger. Heidegger began his career in theology, but then moved into academia as a student of philosophy. While Heidegger’s philosophical inquiry began in alignment with Husserl’s work, he later challenged several key aspects of Husserl’s transcendental phenomenology. A foundational break from his predecessor was the focus of phenomenological inquiry. While Husserl was interested in the nature of knowledge (i. e., an epistemological focus), Heidegger was interested in the nature of being and temporality (i. e., an ontological focus) [ 21 ]. With this focus on human experience and how it is lived, hermeneutic phenomenology moves away from Husserl’s focus on ‘acts of attending, perceiving, recalling and thinking about the world [ 13 ]’ and on human beings as knowers of phenomenon. In contrast, Heidegger is interested in human beings as actors in the world and so focuses on the relationship between an individual and his/her lifeworld. Heidegger’s term lifeworld referred to the idea that ‘individuals’ realities are invariably influenced by the world in which they live [ 22 ].’ Given this orientation, individuals are understood as always already having an understanding of themselves within the world, even if they are not constantly, explicitly and/or consciously aware of that understanding [ 17 ]. For Heidegger, an individual’s conscious experience of a phenomenon is not separate from the world, nor from the individual’s personal history. Consciousness is, instead, a formation of historically lived experiences including a person’s individual history and the culture in which he/she was raised [ 22 ]. An individual cannot step out of his/her lifeworld. Humans cannot experience a phenomenon without referring back to his/her background understandings. Hermeneutic phenomenology, then, seeks ‘to understand the deeper layers of human experience that lay obscured beneath surface awareness and how the individual’s lifeworld, or the world as he or she pre-reflectively experiences it, influences this experience [ 35 ].’ Hermeneutic phenomenology studies individuals’ narratives to understand what those individuals experience in their daily lives, in their lifeworlds.

But the hermeneutic tradition pushes beyond a descriptive understanding. Hermeneutic phenomenology is rooted in interpretation—interpreting experiences and phenomena via the individual’s lifeworld. Here, Heidegger’s background in theology can be seen as influencing his approach to phenomenology. Hermeneutics refers to the interpretation of texts, to theories developed from the need to translate literature from different languages and where access to the original text (e. g., the Bible) was problematic [ 36 ]. If all human experience is informed by the individual’s lifeworld, and if all experiences must be interpreted through that background, hermeneutic phenomenology must go beyond description of the phenomenon, to the interpretation of the phenomenon. The researcher must be aware of the influence of the individual’s background and account for the influences they exert on the individual’s experience of being.

This is not to say that the individual’s subjective experience—which is inextricably linked with social, cultural, and political contexts—is pre-determined. Heidegger argued that individuals have situated freedom. Situated freedom is a concept that asserts that ‘individuals are free to make choices, but their freedom is not absolute; it is circumscribed by the specific conditions of their daily lives [ 22 ].’ Hermeneutic phenomenology studies the meanings of an individual’s being in the world, as their experience is interpreted through his/her lifeworld, and how these meanings and interpretations influence the choices that the individual makes [ 13 ]. This focus requires the hermeneutic phenomenologist to interpret the narratives provided by research participants in relation to their individual contexts in order to illuminate the fundamental structures of participants’ understanding of being and how that shaped the decisions made by the individual [ 37 ].

Another key aspect that distinguishes hermeneutic phenomenology is the role of the researcher in the inquiry. Instead of bracketing off the researcher’s subjective perspective, hermeneutic phenomenology recognizes that the researcher, like the research subject, cannot be rid of his/her lifeworld. Instead, the researcher’s past experiences and knowledge are valuable guides to the inquiry. It is the researcher’s education and knowledge base that lead him/her to consider a phenomenon or experience worthy of investigation. To ask the research to take an unbiased approach to the data is inconsistent with hermeneutic phenomenology’s philosophical roots. Instead, researchers working from this tradition should openly acknowledge their preconceptions, and reflect on how their subjectivity is part of the analysis process [ 16 ].

The interpretive work of hermeneutic phenomenology is not bound to a single set of rule-bound analytical techniques; instead, it is an interpretive process involving the interplay of multiple analysis activities [ 35 ]. In general, this process:

Starts with identifying an interesting phenomenon that directs our attention towards lived experience. Members of the research team then investigate experience as it is lived, rather than as it is conceptualized, and reflect on the essential [phenomenological] themes that characterize the participant’s experience with the phenomenon, simultaneously reflecting on their own experiences. Researchers capture their reflections in writing and then reflect and write again, creating continuous, iterative cycles to develop increasingly robust and nuanced analyses. Throughout the analysis, researchers must maintain a strong orientation to the phenomenon under study (i.   e., avoid distractions) and attend to the interactions between the parts and the whole. This last step, also described as the hermeneutic circle, emphasizes the practice of deliberately considering how the data (the parts) contribute to the evolving understanding of the phenomena (the whole) and how each enhances the meaning of the other [ 35 ] .

In the hermeneutic approach to phenomenology, theories can help to focus inquiry, to make decisions about research participants, and the way research questions can be addressed [ 22 ]. Theories can also be used to help understand the findings of the study. One scholar whose engagement with hermeneutic phenomenology is widely respected is Max van Manen [ 38 ]. Van Manen acknowledges that hermeneutic phenomenology ‘does not let itself be deceptively reduced to a methodical schema or an interpretative set of procedures [ 39 ].’ Instead, this kind of phenomenology requires the researcher to read deeply into the philosophies of this tradition to grasp the project of hermeneutic phenomenological thinking, reading, and writing.

A recent study published by Bynum et al. illustrates how hermeneutic phenomenology may be employed in HPE [ 2 ]. In this paper, Bynum et al. explored the phenomenon of shame as an emotion experienced by medical residents and offer insights into the effects of shame experiences on learners. As a means in scholarly inquiry, this study demonstrates how hermeneutic phenomenology can provide insight into complex phenomena that are inextricably entwined in HPE.

Incorporating phenomenological research methodologies into HPE scholarship creates opportunities to learn from the experiences of others. Phenomenological research can broaden our understanding of the complex phenomena involved in learning, behaviour, and communication that are germane to our field. But success in these efforts is dependent upon both improved awareness of the potential value of these approaches, and enhanced familiarization with the underlying philosophical orientation and methodological approaches of phenomenology. Perhaps most critically, HPE scholars must construct research processes that align with the tenets of the methodology chosen and the philosophical roots that underlie it. This alignment is the cornerstone for establishing research rigour and trustworthiness.

Following a specific checklist of verification activities or mandatory processes cannot buoy the quality and rigour of a particular phenomenological study. Instead, beyond maintaining fidelity between research question, paradigm, and selected methodology, robust phenomenological research involves deep engagement with the data via reading, reflective writing, re-reading and re-writing. In Moustakas’s approach to transcendental phenomenology, the researcher reads the data, reduces the data to meaning units, re-reads those reductions to then engage in thematic clustering, compares the data, writes descriptions, and so on in an ongoing process of continually engaging with the data and writing reflections and summaries until the researcher can describe the essence of the lived experience [ 18 ]. In hermeneutic phenomenology, scholars describe engaging in a hermeneutic circle wherein the researcher reads the data, constructs a vague understanding, engages in reflective writing, then re-engages with the text with revised understandings [ 40 ]. In cycles of reading and writing, of attending to the whole of the text and the parts, the hermeneutic researcher constructs an understanding of the lived experience. In both traditions, deep engagement with the data via reading, writing, re-reading and re-writing is foundational. While this engagement work is not standardized, Polkinghorne suggests that rich descriptions of phenomenological research might be characterized by qualities such as vividness, richness, accuracy, and elegance [ 41 ]. While we question how these qualities might be evaluated in a qualitative study, they confirm that attention to the depth of engagement in reading and writing of the phenomenological data is a necessary condition for rigour.

Phenomenology is a valuable tool and research strategy. For those who are not familiar with its philosophical underpinnings or methodological application, it can seem challenging to apply to HPE scholarship. We hope this manuscript will serve to relieve some of the apprehension in considering the use of phenomenology in future work. We believe that the appropriate application of phenomenology to HPE’s research questions will help us to advance our understanding by learning from the experiences of others.

The views expressed herein are those of the authors and do not necessarily reflect those of the Uniformed Services University of the Health Sciences, the United States Department of Defense or other federal agencies.

Intramural Grant, Uniformed Services University

Biographies

MD, FACP, is a general internist and chief of the general internal medicine service at Walter Reed National Military Medical Center and associate professor of medicine at the Uniformed Services University of the Health Sciences.

MD, MPH, is an obstetrician/gynaecologist, professor of preventive medicine and biostatistics, and program director for the general preventive medicine program at the Uniformed Services University of the Health Sciences.

PhD, is professor of medicine and associate director of research for health professions education programs at the Uniformed Services University of the Health Sciences.

The views expressed are those of the authors and do not necessarily reflect the official policy or position of the US Air Force, Department of Defense, or the US Government.

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Research: More People Use Mental Health Benefits When They Hear That Colleagues Use Them Too

• Laura M. Giurge,
• Lauren C. Howe,
• Zsofia Belovai,
• Guusje Lindemann,
• Sharon O’Connor

A study of 2,400 Novartis employees around the world found that simply hearing about others’ struggles can normalize accessing support at work.

Novartis has trained more than 1,000 employees as Mental Health First Aiders to offer peer-to-peer support for their colleagues. While employees were eager for the training, uptake of the program remains low. To understand why, a team of researchers conducted a randomized controlled trial with 2,400 Novartis employees who worked in the UK, Ireland, India, and Malaysia. Employees were shown one of six framings that were designed to overcome two key barriers: privacy concerns and usage concerns. They found that employees who read a story about their colleague using the service were more likely to sign up to learn more about the program, and that emphasizing the anonymity of the program did not seem to have an impact. Their findings suggest that one way to encourage employees to make use of existing mental health resources is by creating a supportive culture that embraces sharing about mental health challenges at work.

“I almost scheduled an appointment about a dozen times. But no, in the end I never went. I just wasn’t sure if my problems were big enough to warrant help and I didn’t want to take up someone else’s time unnecessarily.”

• Laura M. Giurge is an assistant professor at the London School of Economics, and a faculty affiliate at London Business School. Her research focuses on time and boundaries in organizations, workplace well-being, and the future of work. She is also passionate about translating research to the broader public through interactive and creative keynote talks, workshops, and coaching. Follow her on LinkedIn  here .
• Lauren C. Howe is an assistant professor in management at the University of Zurich. As head of research at the Center for Leadership in the Future of Work , she focuses on how human aspects, such as mindsets, socioemotional skills, and leadership, play a role in the changing world of work.
• Zsofia Belovai is a behavioral science lead for the organizational performance research practice at MoreThanNow, focusing on exploring how employee welfare can drive KPIs.
• Guusje Lindemann is a senior behavioral scientist at MoreThanNow, in the social impact and organizational performance practices, working on making the workplace better for all.
• Sharon O’Connor is the global employee wellbeing lead at Novartis. She is a founding member of the Wellbeing Executives Council of The Conference Board, and a guest lecturer on the Workplace Wellness postgraduate certificate at Trinity College Dublin.

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