the qualitative research journal

Qualitative Research Journal

Issue(s) available: 59 – From Volume: 6 Issue: 1 , to Volume: 24 Issue: 2

• Issue 2 2024 When intercultural communication meets translation studies: divergent experiences in qualitative inquiries
• Issue 1 2024 Methodological entanglements – public pedagogy research
• Issue 5 2023
• Issue 4 2023
• Issue 3 2023
• Issue 2 2023
• Issue 1 2023
• Issue 4 2022
• Issue 3 2022
• Issue 2 2022
• Issue 1 2022 Critically Exploring Co-production
• Issue 4 2021
• Issue 3 2021
• Issue 2 2021
• Issue 1 2021
• Issue 4 2020 Research and Methodology in times of Crisis and Emergency
• Issue 3 2020 The Practice of Qualitative Research in Migration Studies: Ethical Issues as a Methodological Challenge
• Issue 2 2020
• Issue 1 2020
• Issue 4 2019 Creative approaches to researching further, higher and adult education
• Issue 3 2019
• Issue 2 2019
• Issue 1 2019 Journeys in and through sound
• Issue 4 2018
• Issue 3 2018
• Issue 2 2018 Revisiting ‘Can the Subaltern Speak?’: 30 years later
• Issue 1 2018
• Issue 4 2017
• Issue 3 2017 Bordering, exclusions and necropolitics
• Issue 2 2017
• Issue 1 2017
• Issue 4 2016
• Issue 3 2016 Auto-, duo- and collaborative- ethnographies:
• Issue 2 2016
• Issue 1 2016
• Issue 4 2015 Art practice as methodological innovation
• Issue 3 2015
• Issue 2 2015 Sub-prime scholarship
• Issue 1 2015
• Issue 3 2014
• Issue 2 2014
• Issue 1 2014 Approaches to Researching Masculinities
• Issue 3 2013
• Issue 2 2013 Selected papers from the 2012 Association of Qualitative ResearchDiscourse, Power and Resistance Conference
• Issue 1 2013
• Issue 2 2012
• Issue 1 2012
• Issue 2 2011
• Issue 1 2011
• Issue 2 2010
• Issue 1 2010
• Issue 2 2009
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• Issue 2 2008
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• Issue 2 2007
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• Issue 2 2006
• Issue 1 2006

Outside the field, inside the home: lessons learned from adapting qualitative research strategies during the COVID-19 pandemic

This collaborative paper presents three case studies on four scholars' experiences with remote data collection. The authors highlight the challenges and strengths of online…

Incorporating pragmatism in a behaviour change-led climate adaptation project: a collaborative reflection

This article argues the value of integrating pragmatism in applying behavioural science to complex challenges. We describe a behaviour change-led knowledge co-production process…

Harnessing the potential of translanguaging in Tanzanian secondary education

This study aims to explore motives behind teachers' and students' use of translanguaging and how they use it in Tanzanian public secondary school classrooms.

Negotiating with technology: advancing the virtual in qualitative research methods

This study aims to describe key elements that are critical to virtual qualitative research especially while working with practitioners as participants.

Using data as poetry and text in case study research – poetic representations of adult learner experiences in neighbourhood houses

We argue this method of inquiry better represents the participants' learning, lives and experiences in the formal neoliberal education system prioritising performativity…

Conducting collage elicitation research online: what happens when we remove the scissors and glue?

This autoethnographic article presents the adaptation of collage—an arts-based method traditionally used in face-to-face settings—into an online research tool. It emphasizes the…

“But our worlds are different!”: reflexivity as a tool to negotiate insider–outsider dilemmas

In ethnographic research, negotiating insider–outsider perspectives is essential in order to get closer to the participants’ lives. By highlighting the importance of empathy and…

“Online group discussion was challenging but we enjoyed it!” an exploratory practice in extensive reading

While many works have reported adopting exploratory practice (EP) principles in language teaching research, only a few studies have explored the enactment of EP in an online…

Free association and qualitative research interviewing: perspectives and applications

This paper contributes to a dialogue about the psychoanalytic concept of free association and its application in the context of qualitative research interviewing. In doing so, it…

Opportunities and challenges facing LGBTQ+ people in employment in rural England post-pandemic: a thematic analysis

The following study aimed to better understand rural dwelling LGBTQ+ adults’ experiences of the challenges and opportunities facing their working lives in England.

Tell me about your trauma: an empathetic approach-based protocol for interviewing school leaders who have experienced a crisis

In this study, we illuminate how techniques can be incorporated into interview protocols when conducting research with educational leaders who are being asked to discuss their…

Advancing women to leadership in academia: does personal branding matter?

Personal branding is a strategic tool of marketing and communication to define success in organisations. While it constitutes a conscious attempt to commodify self and audit self…

Reflections on a cross-cultural interview study

The aim of this article is to address some aspects of a cross-cultural interview study conducted in a PhD research project. This is done by reflecting on and discussing the…

Translanguaging approaches and perceptions of Iranian EGP teachers in bi/multilingual educational spaces: a qualitative inquiry

This study aims to analyze translanguaging practices and beliefs of Iranian English for General Purposes (EGP) teachers and find discrepancies between the practice and perception…

Women leaders' lived experiences of bravery in leadership

The research aims to understand the stories of women leaders who have demonstrated bravery in leadership. By analyzing their lived experiences through storytelling and narratives…

Listening to children's voices: reflections on methods, practices and ethics in researching with children using zoom video interviews

The purpose of this research was to reflect on the enablers, challenges and ethical considerations in conducting qualitative research with young children using online methods. The…

Using teacher narratives to map policy effects in the Victorian Government International Baccalaureate Primary Years Programme (IB-PYP) context

Government primary schools in Australia increasingly take up the International Baccalaureate's Primary Years Programme (IB-PYP) to supplement government-mandated curriculum and…

The use of digital technologies in the co-creation process of photo elicitation

This article approaches the possibilities of photo elicitation as a technique for social research in the landscape of technology-mediated instantaneous interpersonal communication.

Culturally responsive and communicative teaching for multicultural integration: qualitative analysis from public secondary school

The aim of this paper is to examine the strategic approach of culturally responsive and communicative teaching (CRCT) through a critical assessment of interracial teachers in…

Unraveling the challenges of education for sustainable development: a compelling case study

Education for sustainable development (ESD) has gained significant attention, but integrating ESD into existing education systems is challenging. The study aims to explore the…

Children's voices through play-based practice: listening, intensities and critique

This paper offers a reflection of a research process aimed at listening to young children's voices in their everyday school life through a play-based context in a Scottish school…

Handle with care; considerations of Braun and Clarke's approach to thematic analysis

The purpose of this paper is to support potential users of thematic analysis (as outlined by Virginia Braun and Victoria Clarke). Researchers with the intention of applying…

Problem areas of determining the sample size in qualitative research: a model proposal

The lack of a definite standard for determining the sample size in qualitative research leaves the research process to the initiative of the researcher, and this situation…

Operationalising critical realism for case study research

Critical realism is an increasingly popular “lens” through which complex events, entities and phenomena can be studied. Yet detailed operationalisations of critical realism are at…

Language, educational inequalities and epistemic access: crafting alternative pathways for Fiji

The goal of this article is two-fold. The first is to contribute new insights to inform education policies for addressing the underlying educational inequalities and injustices…

Behind my pet's shadow: exploring the motives underlying the tendency of socially excluded consumers to anthropomorphize their pets

Social exclusion is a complicated psychological phenomenon with behavioral ramifications that influences consumers' lifestyles and behaviors. In contrast, anthropomorphism is a…

Street vendors and power relations among actors: process of place making in Borobudur food and craft market

Existing literature shows conflicting views regarding street vendors in a place. They are considered both positive and negative. Their existence has rarely been examined from a…

Visual tools for supporting interviews in qualitative research: new approaches

This study aims to describe and evaluate various visual and creative tools for supporting the in-depth biographical interview aimed at analyzing educational communities and their…

Illuminating the path: a methodological exploration of grounded theory in doctoral theses

This article explores challenges faced by doctoral candidates using grounded theory (GT) in their theses, focusing on coding, theory development and time constraints. It also…

The experience of hurt in the deepest part of self; a phenomenological study in young people with non-suicidal self-injury (NSSI)

What is happening in the perceived world of young people who have non-suicidal self-injury? The answer to this question explains many quantitative research findings in the field…

Living with the scepticism for qualitative research: a phenomenological polyethnography

This paper aims to explore how an academic researcher and a practitioner experience scepticism for their qualitative research.

It's too late – the post has gone viral already: a novel methodological stance to explore K-12 teachers' lived experiences of adult cyber abuse

The purpose of this scoping rapid review was to identify and analyse existing qualitative methodologies that have been used to investigate K-12 teachers' lived experiences of…

“A balancing act of keeping the faith and maintaining wellbeing”: perspectives from Australian faith communities during the pandemic

The pandemic presented many new challenges is all spheres of life including faith communities. Around the globe, lockdowns took pace at various stages with varying restrictions…

How to build rapport in online space: using online chat emoticons for qualitative interviewing in feminist research

This study draws on the author's experiences building rapport through online chat for data collection for the author's doctoral dissertation. The author contacted ten Korean women…

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How to use and assess qualitative research methods

Loraine busetto.

1 Department of Neurology, Heidelberg University Hospital, Im Neuenheimer Feld 400, 69120 Heidelberg, Germany

Wolfgang Wick

2 Clinical Cooperation Unit Neuro-Oncology, German Cancer Research Center, Heidelberg, Germany

Christoph Gumbinger

Associated data.

Not applicable.

This paper aims to provide an overview of the use and assessment of qualitative research methods in the health sciences. Qualitative research can be defined as the study of the nature of phenomena and is especially appropriate for answering questions of why something is (not) observed, assessing complex multi-component interventions, and focussing on intervention improvement. The most common methods of data collection are document study, (non-) participant observations, semi-structured interviews and focus groups. For data analysis, field-notes and audio-recordings are transcribed into protocols and transcripts, and coded using qualitative data management software. Criteria such as checklists, reflexivity, sampling strategies, piloting, co-coding, member-checking and stakeholder involvement can be used to enhance and assess the quality of the research conducted. Using qualitative in addition to quantitative designs will equip us with better tools to address a greater range of research problems, and to fill in blind spots in current neurological research and practice.

The aim of this paper is to provide an overview of qualitative research methods, including hands-on information on how they can be used, reported and assessed. This article is intended for beginning qualitative researchers in the health sciences as well as experienced quantitative researchers who wish to broaden their understanding of qualitative research.

What is qualitative research?

Qualitative research is defined as “the study of the nature of phenomena”, including “their quality, different manifestations, the context in which they appear or the perspectives from which they can be perceived” , but excluding “their range, frequency and place in an objectively determined chain of cause and effect” [ 1 ]. This formal definition can be complemented with a more pragmatic rule of thumb: qualitative research generally includes data in form of words rather than numbers [ 2 ].

Why conduct qualitative research?

Because some research questions cannot be answered using (only) quantitative methods. For example, one Australian study addressed the issue of why patients from Aboriginal communities often present late or not at all to specialist services offered by tertiary care hospitals. Using qualitative interviews with patients and staff, it found one of the most significant access barriers to be transportation problems, including some towns and communities simply not having a bus service to the hospital [ 3 ]. A quantitative study could have measured the number of patients over time or even looked at possible explanatory factors – but only those previously known or suspected to be of relevance. To discover reasons for observed patterns, especially the invisible or surprising ones, qualitative designs are needed.

While qualitative research is common in other fields, it is still relatively underrepresented in health services research. The latter field is more traditionally rooted in the evidence-based-medicine paradigm, as seen in " research that involves testing the effectiveness of various strategies to achieve changes in clinical practice, preferably applying randomised controlled trial study designs (...) " [ 4 ]. This focus on quantitative research and specifically randomised controlled trials (RCT) is visible in the idea of a hierarchy of research evidence which assumes that some research designs are objectively better than others, and that choosing a "lesser" design is only acceptable when the better ones are not practically or ethically feasible [ 5 , 6 ]. Others, however, argue that an objective hierarchy does not exist, and that, instead, the research design and methods should be chosen to fit the specific research question at hand – "questions before methods" [ 2 , 7 – 9 ]. This means that even when an RCT is possible, some research problems require a different design that is better suited to addressing them. Arguing in JAMA, Berwick uses the example of rapid response teams in hospitals, which he describes as " a complex, multicomponent intervention – essentially a process of social change" susceptible to a range of different context factors including leadership or organisation history. According to him, "[in] such complex terrain, the RCT is an impoverished way to learn. Critics who use it as a truth standard in this context are incorrect" [ 8 ] . Instead of limiting oneself to RCTs, Berwick recommends embracing a wider range of methods , including qualitative ones, which for "these specific applications, (...) are not compromises in learning how to improve; they are superior" [ 8 ].

Research problems that can be approached particularly well using qualitative methods include assessing complex multi-component interventions or systems (of change), addressing questions beyond “what works”, towards “what works for whom when, how and why”, and focussing on intervention improvement rather than accreditation [ 7 , 9 – 12 ]. Using qualitative methods can also help shed light on the “softer” side of medical treatment. For example, while quantitative trials can measure the costs and benefits of neuro-oncological treatment in terms of survival rates or adverse effects, qualitative research can help provide a better understanding of patient or caregiver stress, visibility of illness or out-of-pocket expenses.

How to conduct qualitative research?

Given that qualitative research is characterised by flexibility, openness and responsivity to context, the steps of data collection and analysis are not as separate and consecutive as they tend to be in quantitative research [ 13 , 14 ]. As Fossey puts it : “sampling, data collection, analysis and interpretation are related to each other in a cyclical (iterative) manner, rather than following one after another in a stepwise approach” [ 15 ]. The researcher can make educated decisions with regard to the choice of method, how they are implemented, and to which and how many units they are applied [ 13 ]. As shown in Fig.  1 , this can involve several back-and-forth steps between data collection and analysis where new insights and experiences can lead to adaption and expansion of the original plan. Some insights may also necessitate a revision of the research question and/or the research design as a whole. The process ends when saturation is achieved, i.e. when no relevant new information can be found (see also below: sampling and saturation). For reasons of transparency, it is essential for all decisions as well as the underlying reasoning to be well-documented.

Iterative research process

While it is not always explicitly addressed, qualitative methods reflect a different underlying research paradigm than quantitative research (e.g. constructivism or interpretivism as opposed to positivism). The choice of methods can be based on the respective underlying substantive theory or theoretical framework used by the researcher [ 2 ].

Data collection

The methods of qualitative data collection most commonly used in health research are document study, observations, semi-structured interviews and focus groups [ 1 , 14 , 16 , 17 ].

Document study

Document study (also called document analysis) refers to the review by the researcher of written materials [ 14 ]. These can include personal and non-personal documents such as archives, annual reports, guidelines, policy documents, diaries or letters.

Observations

Observations are particularly useful to gain insights into a certain setting and actual behaviour – as opposed to reported behaviour or opinions [ 13 ]. Qualitative observations can be either participant or non-participant in nature. In participant observations, the observer is part of the observed setting, for example a nurse working in an intensive care unit [ 18 ]. In non-participant observations, the observer is “on the outside looking in”, i.e. present in but not part of the situation, trying not to influence the setting by their presence. Observations can be planned (e.g. for 3 h during the day or night shift) or ad hoc (e.g. as soon as a stroke patient arrives at the emergency room). During the observation, the observer takes notes on everything or certain pre-determined parts of what is happening around them, for example focusing on physician-patient interactions or communication between different professional groups. Written notes can be taken during or after the observations, depending on feasibility (which is usually lower during participant observations) and acceptability (e.g. when the observer is perceived to be judging the observed). Afterwards, these field notes are transcribed into observation protocols. If more than one observer was involved, field notes are taken independently, but notes can be consolidated into one protocol after discussions. Advantages of conducting observations include minimising the distance between the researcher and the researched, the potential discovery of topics that the researcher did not realise were relevant and gaining deeper insights into the real-world dimensions of the research problem at hand [ 18 ].

Semi-structured interviews

Hijmans & Kuyper describe qualitative interviews as “an exchange with an informal character, a conversation with a goal” [ 19 ]. Interviews are used to gain insights into a person’s subjective experiences, opinions and motivations – as opposed to facts or behaviours [ 13 ]. Interviews can be distinguished by the degree to which they are structured (i.e. a questionnaire), open (e.g. free conversation or autobiographical interviews) or semi-structured [ 2 , 13 ]. Semi-structured interviews are characterized by open-ended questions and the use of an interview guide (or topic guide/list) in which the broad areas of interest, sometimes including sub-questions, are defined [ 19 ]. The pre-defined topics in the interview guide can be derived from the literature, previous research or a preliminary method of data collection, e.g. document study or observations. The topic list is usually adapted and improved at the start of the data collection process as the interviewer learns more about the field [ 20 ]. Across interviews the focus on the different (blocks of) questions may differ and some questions may be skipped altogether (e.g. if the interviewee is not able or willing to answer the questions or for concerns about the total length of the interview) [ 20 ]. Qualitative interviews are usually not conducted in written format as it impedes on the interactive component of the method [ 20 ]. In comparison to written surveys, qualitative interviews have the advantage of being interactive and allowing for unexpected topics to emerge and to be taken up by the researcher. This can also help overcome a provider or researcher-centred bias often found in written surveys, which by nature, can only measure what is already known or expected to be of relevance to the researcher. Interviews can be audio- or video-taped; but sometimes it is only feasible or acceptable for the interviewer to take written notes [ 14 , 16 , 20 ].

Focus groups

Focus groups are group interviews to explore participants’ expertise and experiences, including explorations of how and why people behave in certain ways [ 1 ]. Focus groups usually consist of 6–8 people and are led by an experienced moderator following a topic guide or “script” [ 21 ]. They can involve an observer who takes note of the non-verbal aspects of the situation, possibly using an observation guide [ 21 ]. Depending on researchers’ and participants’ preferences, the discussions can be audio- or video-taped and transcribed afterwards [ 21 ]. Focus groups are useful for bringing together homogeneous (to a lesser extent heterogeneous) groups of participants with relevant expertise and experience on a given topic on which they can share detailed information [ 21 ]. Focus groups are a relatively easy, fast and inexpensive method to gain access to information on interactions in a given group, i.e. “the sharing and comparing” among participants [ 21 ]. Disadvantages include less control over the process and a lesser extent to which each individual may participate. Moreover, focus group moderators need experience, as do those tasked with the analysis of the resulting data. Focus groups can be less appropriate for discussing sensitive topics that participants might be reluctant to disclose in a group setting [ 13 ]. Moreover, attention must be paid to the emergence of “groupthink” as well as possible power dynamics within the group, e.g. when patients are awed or intimidated by health professionals.

Choosing the “right” method

As explained above, the school of thought underlying qualitative research assumes no objective hierarchy of evidence and methods. This means that each choice of single or combined methods has to be based on the research question that needs to be answered and a critical assessment with regard to whether or to what extent the chosen method can accomplish this – i.e. the “fit” between question and method [ 14 ]. It is necessary for these decisions to be documented when they are being made, and to be critically discussed when reporting methods and results.

Let us assume that our research aim is to examine the (clinical) processes around acute endovascular treatment (EVT), from the patient’s arrival at the emergency room to recanalization, with the aim to identify possible causes for delay and/or other causes for sub-optimal treatment outcome. As a first step, we could conduct a document study of the relevant standard operating procedures (SOPs) for this phase of care – are they up-to-date and in line with current guidelines? Do they contain any mistakes, irregularities or uncertainties that could cause delays or other problems? Regardless of the answers to these questions, the results have to be interpreted based on what they are: a written outline of what care processes in this hospital should look like. If we want to know what they actually look like in practice, we can conduct observations of the processes described in the SOPs. These results can (and should) be analysed in themselves, but also in comparison to the results of the document analysis, especially as regards relevant discrepancies. Do the SOPs outline specific tests for which no equipment can be observed or tasks to be performed by specialized nurses who are not present during the observation? It might also be possible that the written SOP is outdated, but the actual care provided is in line with current best practice. In order to find out why these discrepancies exist, it can be useful to conduct interviews. Are the physicians simply not aware of the SOPs (because their existence is limited to the hospital’s intranet) or do they actively disagree with them or does the infrastructure make it impossible to provide the care as described? Another rationale for adding interviews is that some situations (or all of their possible variations for different patient groups or the day, night or weekend shift) cannot practically or ethically be observed. In this case, it is possible to ask those involved to report on their actions – being aware that this is not the same as the actual observation. A senior physician’s or hospital manager’s description of certain situations might differ from a nurse’s or junior physician’s one, maybe because they intentionally misrepresent facts or maybe because different aspects of the process are visible or important to them. In some cases, it can also be relevant to consider to whom the interviewee is disclosing this information – someone they trust, someone they are otherwise not connected to, or someone they suspect or are aware of being in a potentially “dangerous” power relationship to them. Lastly, a focus group could be conducted with representatives of the relevant professional groups to explore how and why exactly they provide care around EVT. The discussion might reveal discrepancies (between SOPs and actual care or between different physicians) and motivations to the researchers as well as to the focus group members that they might not have been aware of themselves. For the focus group to deliver relevant information, attention has to be paid to its composition and conduct, for example, to make sure that all participants feel safe to disclose sensitive or potentially problematic information or that the discussion is not dominated by (senior) physicians only. The resulting combination of data collection methods is shown in Fig.  2 .

Possible combination of data collection methods

Attributions for icons: “Book” by Serhii Smirnov, “Interview” by Adrien Coquet, FR, “Magnifying Glass” by anggun, ID, “Business communication” by Vectors Market; all from the Noun Project

The combination of multiple data source as described for this example can be referred to as “triangulation”, in which multiple measurements are carried out from different angles to achieve a more comprehensive understanding of the phenomenon under study [ 22 , 23 ].

Data analysis

To analyse the data collected through observations, interviews and focus groups these need to be transcribed into protocols and transcripts (see Fig.  3 ). Interviews and focus groups can be transcribed verbatim , with or without annotations for behaviour (e.g. laughing, crying, pausing) and with or without phonetic transcription of dialects and filler words, depending on what is expected or known to be relevant for the analysis. In the next step, the protocols and transcripts are coded , that is, marked (or tagged, labelled) with one or more short descriptors of the content of a sentence or paragraph [ 2 , 15 , 23 ]. Jansen describes coding as “connecting the raw data with “theoretical” terms” [ 20 ]. In a more practical sense, coding makes raw data sortable. This makes it possible to extract and examine all segments describing, say, a tele-neurology consultation from multiple data sources (e.g. SOPs, emergency room observations, staff and patient interview). In a process of synthesis and abstraction, the codes are then grouped, summarised and/or categorised [ 15 , 20 ]. The end product of the coding or analysis process is a descriptive theory of the behavioural pattern under investigation [ 20 ]. The coding process is performed using qualitative data management software, the most common ones being InVivo, MaxQDA and Atlas.ti. It should be noted that these are data management tools which support the analysis performed by the researcher(s) [ 14 ].

From data collection to data analysis

Attributions for icons: see Fig. ​ Fig.2, 2 , also “Speech to text” by Trevor Dsouza, “Field Notes” by Mike O’Brien, US, “Voice Record” by ProSymbols, US, “Inspection” by Made, AU, and “Cloud” by Graphic Tigers; all from the Noun Project

How to report qualitative research?

Protocols of qualitative research can be published separately and in advance of the study results. However, the aim is not the same as in RCT protocols, i.e. to pre-define and set in stone the research questions and primary or secondary endpoints. Rather, it is a way to describe the research methods in detail, which might not be possible in the results paper given journals’ word limits. Qualitative research papers are usually longer than their quantitative counterparts to allow for deep understanding and so-called “thick description”. In the methods section, the focus is on transparency of the methods used, including why, how and by whom they were implemented in the specific study setting, so as to enable a discussion of whether and how this may have influenced data collection, analysis and interpretation. The results section usually starts with a paragraph outlining the main findings, followed by more detailed descriptions of, for example, the commonalities, discrepancies or exceptions per category [ 20 ]. Here it is important to support main findings by relevant quotations, which may add information, context, emphasis or real-life examples [ 20 , 23 ]. It is subject to debate in the field whether it is relevant to state the exact number or percentage of respondents supporting a certain statement (e.g. “Five interviewees expressed negative feelings towards XYZ”) [ 21 ].

How to combine qualitative with quantitative research?

Qualitative methods can be combined with other methods in multi- or mixed methods designs, which “[employ] two or more different methods [ …] within the same study or research program rather than confining the research to one single method” [ 24 ]. Reasons for combining methods can be diverse, including triangulation for corroboration of findings, complementarity for illustration and clarification of results, expansion to extend the breadth and range of the study, explanation of (unexpected) results generated with one method with the help of another, or offsetting the weakness of one method with the strength of another [ 1 , 17 , 24 – 26 ]. The resulting designs can be classified according to when, why and how the different quantitative and/or qualitative data strands are combined. The three most common types of mixed method designs are the convergent parallel design , the explanatory sequential design and the exploratory sequential design. The designs with examples are shown in Fig.  4 .

Three common mixed methods designs

In the convergent parallel design, a qualitative study is conducted in parallel to and independently of a quantitative study, and the results of both studies are compared and combined at the stage of interpretation of results. Using the above example of EVT provision, this could entail setting up a quantitative EVT registry to measure process times and patient outcomes in parallel to conducting the qualitative research outlined above, and then comparing results. Amongst other things, this would make it possible to assess whether interview respondents’ subjective impressions of patients receiving good care match modified Rankin Scores at follow-up, or whether observed delays in care provision are exceptions or the rule when compared to door-to-needle times as documented in the registry. In the explanatory sequential design, a quantitative study is carried out first, followed by a qualitative study to help explain the results from the quantitative study. This would be an appropriate design if the registry alone had revealed relevant delays in door-to-needle times and the qualitative study would be used to understand where and why these occurred, and how they could be improved. In the exploratory design, the qualitative study is carried out first and its results help informing and building the quantitative study in the next step [ 26 ]. If the qualitative study around EVT provision had shown a high level of dissatisfaction among the staff members involved, a quantitative questionnaire investigating staff satisfaction could be set up in the next step, informed by the qualitative study on which topics dissatisfaction had been expressed. Amongst other things, the questionnaire design would make it possible to widen the reach of the research to more respondents from different (types of) hospitals, regions, countries or settings, and to conduct sub-group analyses for different professional groups.

How to assess qualitative research?

A variety of assessment criteria and lists have been developed for qualitative research, ranging in their focus and comprehensiveness [ 14 , 17 , 27 ]. However, none of these has been elevated to the “gold standard” in the field. In the following, we therefore focus on a set of commonly used assessment criteria that, from a practical standpoint, a researcher can look for when assessing a qualitative research report or paper.

Assessors should check the authors’ use of and adherence to the relevant reporting checklists (e.g. Standards for Reporting Qualitative Research (SRQR)) to make sure all items that are relevant for this type of research are addressed [ 23 , 28 ]. Discussions of quantitative measures in addition to or instead of these qualitative measures can be a sign of lower quality of the research (paper). Providing and adhering to a checklist for qualitative research contributes to an important quality criterion for qualitative research, namely transparency [ 15 , 17 , 23 ].

Reflexivity

While methodological transparency and complete reporting is relevant for all types of research, some additional criteria must be taken into account for qualitative research. This includes what is called reflexivity, i.e. sensitivity to the relationship between the researcher and the researched, including how contact was established and maintained, or the background and experience of the researcher(s) involved in data collection and analysis. Depending on the research question and population to be researched this can be limited to professional experience, but it may also include gender, age or ethnicity [ 17 , 27 ]. These details are relevant because in qualitative research, as opposed to quantitative research, the researcher as a person cannot be isolated from the research process [ 23 ]. It may influence the conversation when an interviewed patient speaks to an interviewer who is a physician, or when an interviewee is asked to discuss a gynaecological procedure with a male interviewer, and therefore the reader must be made aware of these details [ 19 ].

Sampling and saturation

The aim of qualitative sampling is for all variants of the objects of observation that are deemed relevant for the study to be present in the sample “ to see the issue and its meanings from as many angles as possible” [ 1 , 16 , 19 , 20 , 27 ] , and to ensure “information-richness [ 15 ]. An iterative sampling approach is advised, in which data collection (e.g. five interviews) is followed by data analysis, followed by more data collection to find variants that are lacking in the current sample. This process continues until no new (relevant) information can be found and further sampling becomes redundant – which is called saturation [ 1 , 15 ] . In other words: qualitative data collection finds its end point not a priori , but when the research team determines that saturation has been reached [ 29 , 30 ].

This is also the reason why most qualitative studies use deliberate instead of random sampling strategies. This is generally referred to as “ purposive sampling” , in which researchers pre-define which types of participants or cases they need to include so as to cover all variations that are expected to be of relevance, based on the literature, previous experience or theory (i.e. theoretical sampling) [ 14 , 20 ]. Other types of purposive sampling include (but are not limited to) maximum variation sampling, critical case sampling or extreme or deviant case sampling [ 2 ]. In the above EVT example, a purposive sample could include all relevant professional groups and/or all relevant stakeholders (patients, relatives) and/or all relevant times of observation (day, night and weekend shift).

Assessors of qualitative research should check whether the considerations underlying the sampling strategy were sound and whether or how researchers tried to adapt and improve their strategies in stepwise or cyclical approaches between data collection and analysis to achieve saturation [ 14 ].

Good qualitative research is iterative in nature, i.e. it goes back and forth between data collection and analysis, revising and improving the approach where necessary. One example of this are pilot interviews, where different aspects of the interview (especially the interview guide, but also, for example, the site of the interview or whether the interview can be audio-recorded) are tested with a small number of respondents, evaluated and revised [ 19 ]. In doing so, the interviewer learns which wording or types of questions work best, or which is the best length of an interview with patients who have trouble concentrating for an extended time. Of course, the same reasoning applies to observations or focus groups which can also be piloted.

Ideally, coding should be performed by at least two researchers, especially at the beginning of the coding process when a common approach must be defined, including the establishment of a useful coding list (or tree), and when a common meaning of individual codes must be established [ 23 ]. An initial sub-set or all transcripts can be coded independently by the coders and then compared and consolidated after regular discussions in the research team. This is to make sure that codes are applied consistently to the research data.

Member checking

Member checking, also called respondent validation , refers to the practice of checking back with study respondents to see if the research is in line with their views [ 14 , 27 ]. This can happen after data collection or analysis or when first results are available [ 23 ]. For example, interviewees can be provided with (summaries of) their transcripts and asked whether they believe this to be a complete representation of their views or whether they would like to clarify or elaborate on their responses [ 17 ]. Respondents’ feedback on these issues then becomes part of the data collection and analysis [ 27 ].

Stakeholder involvement

In those niches where qualitative approaches have been able to evolve and grow, a new trend has seen the inclusion of patients and their representatives not only as study participants (i.e. “members”, see above) but as consultants to and active participants in the broader research process [ 31 – 33 ]. The underlying assumption is that patients and other stakeholders hold unique perspectives and experiences that add value beyond their own single story, making the research more relevant and beneficial to researchers, study participants and (future) patients alike [ 34 , 35 ]. Using the example of patients on or nearing dialysis, a recent scoping review found that 80% of clinical research did not address the top 10 research priorities identified by patients and caregivers [ 32 , 36 ]. In this sense, the involvement of the relevant stakeholders, especially patients and relatives, is increasingly being seen as a quality indicator in and of itself.

How not to assess qualitative research

The above overview does not include certain items that are routine in assessments of quantitative research. What follows is a non-exhaustive, non-representative, experience-based list of the quantitative criteria often applied to the assessment of qualitative research, as well as an explanation of the limited usefulness of these endeavours.

Protocol adherence

Given the openness and flexibility of qualitative research, it should not be assessed by how well it adheres to pre-determined and fixed strategies – in other words: its rigidity. Instead, the assessor should look for signs of adaptation and refinement based on lessons learned from earlier steps in the research process.

Sample size

For the reasons explained above, qualitative research does not require specific sample sizes, nor does it require that the sample size be determined a priori [ 1 , 14 , 27 , 37 – 39 ]. Sample size can only be a useful quality indicator when related to the research purpose, the chosen methodology and the composition of the sample, i.e. who was included and why.

Randomisation

While some authors argue that randomisation can be used in qualitative research, this is not commonly the case, as neither its feasibility nor its necessity or usefulness has been convincingly established for qualitative research [ 13 , 27 ]. Relevant disadvantages include the negative impact of a too large sample size as well as the possibility (or probability) of selecting “ quiet, uncooperative or inarticulate individuals ” [ 17 ]. Qualitative studies do not use control groups, either.

Interrater reliability, variability and other “objectivity checks”

The concept of “interrater reliability” is sometimes used in qualitative research to assess to which extent the coding approach overlaps between the two co-coders. However, it is not clear what this measure tells us about the quality of the analysis [ 23 ]. This means that these scores can be included in qualitative research reports, preferably with some additional information on what the score means for the analysis, but it is not a requirement. Relatedly, it is not relevant for the quality or “objectivity” of qualitative research to separate those who recruited the study participants and collected and analysed the data. Experiences even show that it might be better to have the same person or team perform all of these tasks [ 20 ]. First, when researchers introduce themselves during recruitment this can enhance trust when the interview takes place days or weeks later with the same researcher. Second, when the audio-recording is transcribed for analysis, the researcher conducting the interviews will usually remember the interviewee and the specific interview situation during data analysis. This might be helpful in providing additional context information for interpretation of data, e.g. on whether something might have been meant as a joke [ 18 ].

Not being quantitative research

Being qualitative research instead of quantitative research should not be used as an assessment criterion if it is used irrespectively of the research problem at hand. Similarly, qualitative research should not be required to be combined with quantitative research per se – unless mixed methods research is judged as inherently better than single-method research. In this case, the same criterion should be applied for quantitative studies without a qualitative component.

The main take-away points of this paper are summarised in Table ​ Table1. 1 . We aimed to show that, if conducted well, qualitative research can answer specific research questions that cannot to be adequately answered using (only) quantitative designs. Seeing qualitative and quantitative methods as equal will help us become more aware and critical of the “fit” between the research problem and our chosen methods: I can conduct an RCT to determine the reasons for transportation delays of acute stroke patients – but should I? It also provides us with a greater range of tools to tackle a greater range of research problems more appropriately and successfully, filling in the blind spots on one half of the methodological spectrum to better address the whole complexity of neurological research and practice.

Take-away-points

Acknowledgements

Abbreviations, authors’ contributions.

LB drafted the manuscript; WW and CG revised the manuscript; all authors approved the final versions.

no external funding.

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The authors declare no competing interests.

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Qualitative Health Research

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• Description
• Aims and Scope
• Editorial Board
• Abstracting / Indexing
• Submission Guidelines

Qualitative Health Research provides an international, interdisciplinary forum to enhance health and health care and further the development and understanding of qualitative health research. The journal is an invaluable resource for researchers and academics, administrators and others in the health and social service professions, and graduates, who seek examples of studies in which the authors used qualitative methodologies. Each issue of Qualitative Health Research provides readers with a wealth of information on conceptual, theoretical, methodological, and ethical issues pertaining to qualitative inquiry. A Variety of Perspectives We encourage submissions across all health-related areas and disciplines. Qualitative Health Research understands health in its broadest sense and values contributions from various traditions of qualitative inquiry. As a journal of SAGE Publishing, Qualitative Health Research aspires to disseminate high-quality research and engaged scholarship globally, and we are committed to diversity and inclusion in publishing. We encourage submissions from a diverse range of authors from across all countries and backgrounds. There are no fees payable to submit or publish in Qualitative Health Research .

Original, Timely, and Insightful Scholarship Qualitative Health Research aspires to publish articles addressing significant and contemporary health-related issues. Only manuscripts of sufficient originality and quality that align with the aims and scope of Qualitative Health Research will be reviewed. As part of the submission process authors are required to warrant that they are submitting original work, that they have the rights in the work, that they have obtained, and that can supply all necessary permissions for the reproduction of any copyright works not owned by them, and that they are submitting the work for first publication in the Journal and that it is not being considered for publication elsewhere and has not already been published elsewhere. Please note that Qualitative Health Research does not accept submissions of papers that have been published elsewhere. Sage requires authors to identify preprints upon submission (see https://us.sagepub.com/en-us/nam/preprintsfaq ). This Journal is a member of the Committee on Publication Ethics (COPE) .

This Journal recommends that authors follow the Recommendations for the Conduct, Reporting, Editing, and Publication of Scholarly Work in Medical Journals formulated by the International Committee of Medical Journal Editors (ICMJE).

Qualitative Health Research is an international, interdisciplinary, refereed journal for the enhancement of health care and to further the development and understanding of qualitative research methods in health care settings. We welcome manuscripts in the following areas: the description and analysis of the illness experience, health and health-seeking behaviors, the experiences of caregivers, the sociocultural organization of health care, health care policy, and related topics. We also seek critical reviews and commentaries addressing conceptual, theoretical, methodological, and ethical issues pertaining to qualitative enquiry.

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Manuscript submission guidelines:

Qualitative Health Research (QHR)  has specific guidelines! While  Sage Publishing has general guidelines , all manuscripts submitted to QHR must follow our specific guidelines (found below). Once you have reviewed these guidelines, please visit QHR ’s  submission site  to upload your manuscript.   Please note that manuscripts not conforming to these guidelines will be returned and/or encounter delays in peer review.   Remember you can log in to the submission site at any time to check on the progress of your manuscript throughout the peer review process.

1. Deciding whether to submit a manuscript to QHR

1.1 Aims & scope

1.2 Article types

2. Review criteria

2.1  Original research studies

2.2 Pearls, Piths, and Provocations

2.3 Common reasons for rejection

3.  Preparing your manuscript

3.1 Title page

3.2 Abstract

3.3 Manuscript

3.4 Tables, Figures, Artwork, and other graphics

3.5 Supplemental material

4. Submitting your manuscript

5. Editorial Policies

5.1 Peer review policy

5.2 Authorship

5.3 Acknowledgments

5.4 Funding

5.5 Declaration of conflicting interests

5.6 Research ethics and participant consent

6. Publishing Policies

6.1 Publication ethics

6.2 Contribtor's publishing agreement

6.3 Open access and author archiving

1. Deciding whether to submit a manuscript to QHR 

QHR  provides an international, interdisciplinary forum to enhance health and health care and further the development and understanding of qualitative health research. The journal is an invaluable resource for researchers and academics, administrators and others in the health and social service professions, and graduates, who seek examples of studies in which the authors used qualitative methodologies.  Each issue of QHR provides readers with a wealth of information on conceptual, theoretical, methodological, and ethical issues pertaining to qualitative inquiry.

Rather than send query letters to the Editor regarding article fit, QHR asks authors to make their own decision regarding the suitability of their manuscript for QHR   by  asking: Does your proposed submission make a meaningful and strong contribution to qualitative health research literature? Is it useful to readers and/or practitioners?

The following manuscript types are considered for publication.

• Original Research Studies : These are fully developed qualitative research studies. This may include mixed method studies in which the major focus/portion of the study is qualitative research. Please read  Maintaining the Integrity of Qualitatively Driven Mixed Methods: Avoiding the “ This Work is Part of a Larger Study”  Syndrome . 
• Pearls, Piths, and Provocations : These manuscripts should foster discussion and debate about significant issues, enhance communication of methodological advances, promote and discuss issues related to the teaching of qualitative approaches in health contexts, and/or encourage the discussion of new and/or provocative ideas. They should also make clear what the manuscript adds to the existing body of knowledge in the area.
• Editorials : These are generally invited articles written by editors/editorial board members associated with QHR.

Please note, QHR does NOT publish pilot studies. We do not normally publish   literature reviews unless they focus on qualitative research studies elaborating methodological issues and developments. Review articles should be submitted to the Pearls, Piths, and Provocations section. They are reviewed according to criteria in 2.2.

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2. Review criteria 

2.1 Original research

Reviewers are asked to consider the following areas and questions when making recommendations about research manuscripts:

• Importance of submission : Does the manuscript make a significant contribution to qualitative health research literature?  Is it original? Relevant? In depth? Insightful? Is it useful to the reader and/or practitioner?
• Methodological considerations : Is the overall study design clearly explained including why this design was an appropriate one? Are the methodology/methods/approaches used in keeping with that design? Are they appropriate given the research question and/or aims? Are they logically articulated? Clarity in design and presentation? Data adequacy and appropriateness? Evidence of rigor?
• Ethical Concerns : Are relevant ethical concerns discussed and acknowledged? Is enough detail given to enable the reader to understand how ethical issues were navigated? Has formal IRB approval (when needed) and consent from participants been obtained?
• Data analysis, findings, discussion : Does the analysis of data reflect depth and coherence? In-depth descriptive but also interpretive dimensions? Creative and insightful analysis? Are results linked to existing literature and theory, as appropriate? Is the contribution of the research clear including its relevance to health disciplines and their practice?
• Manuscript style and format : Is the manuscript organized in a clear and concise manner? Has sufficient attention been paid to word choice, spelling, grammar, and so forth? Did the author adhere to APA guidelines? Do diagrams/illustrations comply with guidelines? Is the overall manuscript aligned with QHR guidelines in relation to formatting?
• Scope:  Does the article fit with QHR ’s publication mandate? Has the author cited the major work in the area, including those published in QHR ? 

The purpose of papers in this section is to raise and discuss issues pertinent to the development and advancement of qualitative research in health-related arenas.  As the name Pearls, Piths, and Provocations suggests, we are looking for manuscripts that make a significant contribution to areas of dialogue, development, experience sharing and debate relevant to the scope of QHR in this section of the journal.  Reviewers are asked to consider the following questions when making recommendations about  articles in the Pearls, Piths, and Provocations section.

• Significance :   Does the paper highlight issues that have the potential to advance, develop, and/or challenge thinking in qualitative health related research?
• Clarity :   Are the arguments clearly presented and well supported? 
• Rigor :   Is there the explicit use of/interaction with methodology and/or theory and/or empirical studies (depending on the focus of the paper) that grounds the work and is coherently carried throughout the arguments and/or analysis in the manuscript? Put another way, is there evidence of a rigorously constructed argument?
• Engagement :   Does the paper have the potential to engage the reader to ‘think differently’ by raising questions, suggesting innovative directions for qualitative health research, and/or stimulating critical reflection?   Are the implications of the paper for the practice of either qualitative research and/or health clear? 
• Quality of the writing :   Is the main argument of the paper clearly articulated and presented with few grammatical or typographical issues? Are terms and concepts key to the scholarship communicated clearly and in sufficient detail? 

QHR  most commonly turns away manuscripts that fall outside the journal’s scope, do not make a novel contribution to the literature, lack substantive and/or interpretative depth, require extensive revisions, and/or do not adequately address ethical issues that are fundamental to qualitative inquiry. Submissions of the supplementary component of mixed methods studies often are rejected as the findings are difficult to interpret without the findings of the primary study. For additional information on this policy, please read  Maintaining the Integrity of Qualitatively Driven Mixed Methods: Avoiding the “ This Work is Part of a Larger Study”  Syndrome . 

3. Preparing your manuscript for submission 

We strongly encourage all authors to review previously published articles in QHR for style prior to submission.

QHR  journal practices include double anonymization. All identifying information MUST be removed completely from the Abstract, Manuscript, Acknowledgements, Tables, and Figure files prior to submission. ONLY the Title Page and Cover Letter may contain identifying information. See  Sage’s general submission guidelines  for additional guidance on making an anonymous submission.

Preferred formats for the text and tables of your manuscript are Word DOC or PDF. The text must be double-spaced throughout with standard 1-inch margins (APA formatting). Text should be standard font (i.e., Times New Roman) 12-point. 

3.1 Title page 

• The title page should be uploaded as a separate document containing the following information: Author names; Affiliations; Author contact information; Contribution list; Acknowledgements; Ethical statement; Funding Statement; Conflict of Interest Statements; and, Grant Number. Please know that the Title Page is NOT included in the materials sent out for Peer Review.
• Ethical statement: An ethical statement must include the following: the full name of the ethical board that approved your study; the approval number given by the ethical board; and, confirmation that all your participants gave informed consent. Authors are also required to state in the methods section whether participants provided informed consent, whether the consent was written or verbal, and how it was obtained and by whom. For example: “Our study was approved by The Mercy Health Research Ethics Committee (approval no. XYZ123). All participants provided written informed consent prior to enrollment in the study.” If your study did not need ethical approval (often manuscripts in the Pearls, Piths, and Provocations may not), we still need a statement that states that your study did not need approval and an explanation as to why. For example: “Ethical Statement: Our study did not require an ethical board approval because it did not directly involve humans or animals.” 

3.2 Abstract and Keywords

• The Abstract should be unstructured, written in narrative form. Maximum of 250 words. This should be on its own page, appearing as the first page of the Main Manuscript file.
• The keywords should be included beneath the abstract on the Main Manuscript file. 
• Length: 8,000 words or less excluding the abstract, list of references, and acknowledgements. Please note that text from Tables and Figures is included in the word count limits. On-line supplementary materials are not included in the word limit. 
• Structure: While many authors will choose to use headings of Background, Methods, Results, and Discussion to organize their manuscript, it is up to authors to choose the most appropriate terms and structure for their submission. It is the expectation that manuscripts contain detailed reflections on methodological considerations.
• Ethics: In studies where data collection or other methods present ethical challenges, the authors should explicate how such issues were navigated including how consent was gained and by whom. An anonymized version of the ethical statement should be included in the manuscript (in addition to appearing on the title page).
• Participant identification: Generally, demographics should be described in narrative form or otherwise reported as a group. Quotations may be linked to particular participants and/or demographic features provided measures are taken to ensure anonymity of participants (e.g., use of pseudonyms).
• Use of checklists: Authors should not include qualitative research checklists, such as COREQ (COnsolidated criteria for REporting Qualitative research).  Generally, authors should use a narrative approach to describe the processes used to enhance the rigor of their study. For additional information on this policy, please read  Why the Qualitative Health Research (QHR) Review Process Does Not Use Checklists
• References: APA format. While there is no limit to the number of references, authors are recommended to use pertinent references only, including literature previously published in QHR . References should be on a separate page.   QHR adheres to the APA 7 reference style. View the APA guidelines to ensure your manuscript conforms to this reference style. Please ensure you check carefully that both your in-text references and list of references are in the correct format.
• Authors are required to disclose the use of generative Artificial Intelligence (such as ChatGPT) and other technologies (such as NVivo, ATLAS. Ti, Quirkos, etc.), whether used to conceive ideas, develop study design, generate data, assist in analysis, present study findings, or other activities formative of qualitative research. We suggest authors provide both a description of the technology, when it was accessed, and how it was used (see  https://uk.sagepub.com/en-gb/eur/chatgpt-and-generative-ai ).
• Manuscripts that receive favorable reviews will not be accepted until any formatting and copy-editing required has been done. 
• Tables, Figures, Artwork, and other graphics should be submitted as separate files rather than incorporated into the main manuscript file. Within the manuscript, indicate where these items should appear (i.e. INSERT TABLE 1 HERE).
• TIFF, JPED, or common picture formats accepted. The preferred format for graphs and line art is EPS.
• Resolution: Rasterized based files (i.e. with .tiff or .jpeg extension) require a resolution of at least 300 dpi (dots per inch). Line art should be supplied with a minimum resolution of 800 dpi.
• Dimension: Check that the artworks supplied match or exceed the dimensions of the journal. Images cannot be scaled up after origination.
• Figures supplied in color will appear in color online regardless of whether or not these illustrations are reproduced in color in the printed version. For specifically requested color reproduction in print, you will receive information regarding the costs from Sage after receipt of your accepted article. 
• Core elements of the manuscript should not be included as supplementary material.
• QHR  is able to host additional materials online (e.g., datasets, podcasts, videos, images etc.) alongside the full-text of the article. For more information please refer to Sage’s general  guidelines on submitting supplemental files .

4. Submitting your manuscript 

QHR  is hosted on Sage Track, a web based online submission and peer review system powered by ScholarOne™ Manuscripts. Visit  https://mc.manuscriptcentral.com/QHR  to login and submit your article online. 

IMPORTANT:  Please check whether you already have an account in the system before trying to create a new one. If you have reviewed or authored for the Journal in the past year it is likely that you will have had an account created.  For further guidance on submitting your manuscript online please visit  ScholarOne Online Help . 

5. Editorial policies 

QHR  adheres to a rigorous double-anonymized reviewing policy in which the identities of both the reviewer and author are always concealed from both parties.

Sage does not permit the use of author-suggested (recommended) reviewers at any stage of the submission process, be that through the web-based submission system or other communication. Reviewers should be experts in their fields and should be able to provide an objective assessment of the manuscript. Our policy is that reviewers should not be assigned to a manuscript if:

•  The reviewer is based at the same institution as any of the co-authors

•  The reviewer is based at the funding body of the manuscript

•  The author has recommended the reviewer

•  The reviewer has provided a personal (e.g. Gmail/Yahoo/Hotmail) email account and an institutional email account cannot be found after performing a basic Google search (name, department and institution). 

Qualitative Health Research  is committed to delivering high quality, fast peer-review for your manuscript, and as such has partnered with Web of Science. Web of Science is a third-party service that seeks to track, verify and give credit for peer review. Reviewers for Qualitative Health Research can opt in to Web of Science in order to claim their reviews or have them automatically verified and added to their reviewer profile. Reviewers claiming credit for their review will be associated with the relevant journal, but the article name, reviewer’s decision, and the content of their review is not published on the site. For more information visit the  Web of Science  website.

The Editor or members of the Editorial Team or Board may occasionally submit their own manuscripts for possible publication in the Journal. In these cases, the peer review process will be managed by alternative members of the Editorial Team or Board and the submitting Editor Team/Board member will have no involvement in the decision-making process. 

Manuscripts should only be submitted for consideration once consent is given by all contributing authors. Those submitting manuscripts should carefully check that all those whose work contributed to the manuscript are acknowledged as contributing authors. The list of authors should include all those who can legitimately claim authorship. This is all those who meet all of the following criteria:

(i)   Made a substantial contribution to the design of the work or acquisition, analysis, interpretation, or presentation of data,  (ii)  Drafted the article or revised it critically for important intellectual content,  (iii) Approved the version to be published,  (iv) Each author should have participated sufficiently in the work to take public responsibility for appropriate portions of the content.

Acquisition of funding, collection of data, or general supervision of the research group alone does not constitute authorship, although all contributors who do not meet the criteria for authorship should be listed in the Acknowledgments section. Please refer to the  International Committee of Medical Journal Editors (ICMJE) authorship guidelines   for more information on authorship.

Authors are required to disclose the use of generative Artificial Intelligence (such as ChatGPT) and other technologies (such as NVivo, ATLAS. Ti, Quirkos, etc.), whether used to conceive ideas, develop study design, generate data, assist in analysis, present study findings, or other activities formative of qualitative research. We suggest authors provide both a description of the technology, when it was accessed, and how it was used. This needs to be clearly identified within the text and acknowledged within your Acknowledgements section. Please note that AI bots such as ChatGPT should not be listed as an author. For more details on this policy, please visit  ChatGPT and Generative AI . 

5.3 Acknowledgements

All contributors who do not meet the criteria for authorship should be listed in an Acknowledgements section. Examples of those who might be acknowledged include a person who provided purely technical help, or a department chair who provided only general support.

Please supply any personal acknowledgements separately to the main text to facilitate anonymous peer review. 

Per  ICMJE recommendations , it is best practice to obtain consent from non-author contributors who you are acknowledging in your manuscript.

1.3.1 Writing assistance

Individuals who provided writing assistance, e.g., from a specialist communications company, do not qualify as authors and so should be included in the Acknowledgements section. Authors must disclose any writing assistance – including the individual’s name, company and level of input – and identify the entity that paid for this assistance. It is not necessary to disclose use of language polishing services. 

Qualitative Health Research   requires all authors to acknowledge their funding in a consistent fashion under a separate heading.  Please visit the  Funding Acknowledgements   page on the Sage Journal Author Gateway to confirm the format of the acknowledgment text in the event of funding, or state that: This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. 

It is the policy of  Qualitative Health Research to require a declaration of conflicting interests from all authors enabling a statement to be carried within the paginated pages of all published articles.

Please ensure that a ‘Declaration of Conflicting Interests’ statement is included at the end of your manuscript, after any acknowledgements and prior to the references. If no conflict exists, please state that ‘The Author(s) declare(s) that there is no conflict of interest’. For guidance on conflict of interest statements, please see the ICMJE recommendations  here . 

Research involving participants must be conducted according to the  World Medical Association Declaration of Helsinki

Submitted manuscripts should conform to the  ICMJE Recommendations for the Conduct, Reporting, Editing, and Publication of Scholarly Work in Medical Journals :

All manuscripts must state that the relevant Ethics Committee or Institutional Review Board provided (or waived) approval. Please ensure that you blind the name and institution of the review committee until such time as your article has been accepted. The Editor will request authors to replace the name and add the approval number once the article review has been completed. Please note that in itself, simply stating that Ethics Committee or Institutional Review was obtained is not sufficient.  Authors are also required to state in the methods section whether participants provided informed consent, whether the consent was written or verbal, and how it was obtained and by whom.

Please do not submit the participant’s informed consent documents with your article, as this in itself breaches the participant’s confidentiality. The Journal requests that you confirm to us, in writing, that you have obtained informed consent recognizing the documentation of consent itself should be held by the authors/investigators themselves (for example, in a participant’s hospital record or an author’s institution’s archives).

Please also refer to the  ICMJE Recommendations for the Protection of Research Participants . 

6. Publishing Policies 

Sage is committed to upholding the integrity of the academic record. We encourage authors to refer to the Committee on Publication Ethics’  International Standards for Authors  and view the Publication Ethics page on the  Sage Author Gateway .

6.1.1 Plagiarism

Qualitative Health Research  and Sage take issues of copyright infringement, plagiarism or other breaches of best practice in publication very seriously. The Committee on Publication Ethics (COPE) defines plagiarism as: “When somebody presents the work of others (data, words or theories) as if they were his/her own and without proper acknowledgment.” We seek to protect the rights of our authors and we always investigate claims of plagiarism or misuse of published articles. Equally, we seek to protect the reputation of the journal against malpractice. Submitted articles may be checked with duplication-checking software. Where an article, for example, is found to have plagiarised other work or included third-party copyright material without permission or with insufficient acknowledgement, or where the authorship of the article is contested, we reserve the right to take action including, but not limited to: publishing an erratum or corrigendum (correction); retracting the article; taking up the matter with the head of department or dean of the author's institution and/or relevant academic bodies or societies; or taking appropriate legal action.

6.1.2 Prior publication

If material has been previously published it is not generally acceptable for publication in a Sage journal. However, there are certain circumstances where previously published material can be considered for publication. Please refer to the guidance on the  Sage Author Gateway  or if in doubt, contact the Editor at the address given below. 

6.2 Contributor's publishing agreement

Before publication, Sage requires the author as the rights holder to sign a Journal Contributor’s Publishing Agreement. Sage’s Journal Contributor’s Publishing Agreement is an exclusive licence agreement which means that the author retains copyright of the work but grants Sage the sole and exclusive right and licence to publish for the full legal term of copyright. Exceptions may exist where an assignment of copyright is required or preferred by a proprietor other than Sage. In this case copyright in the work will be assigned from the author to the society. For more information please visit the  Sage Author Gateway . 

Qualitative Health Research  offers optional open access publishing via the Sage Choice programme and Open Access agreements, where authors can publish open access either discounted or free of charge depending on the agreement with Sage. Find out if your institution is participating by visiting Open Access Agreements at Sage . For more information on Open Access publishing options at Sage please visit Sage Open Access . For information on funding body compliance, and depositing your article in repositories, please visit Sage’s Author Archiving and Re-Use Guidelines and Publishing Policies .

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Qualitative Research

Preview this book.

• Description
• Aims and Scope
• Editorial Board
• Abstracting / Indexing
• Submission Guidelines

Qualitative Research  publishes papers with a clear methodological focus. We invite scholarship that has multi-disciplinary appeal, that debates and enlivens qualitative methods, and that pushes at the boundaries of established ways of doing qualitative research. We are interested in papers that are attentive to a wide audience, that are alive to new and diverse ways of thinking about qualitative methods, and that contribute to discussions within the pages of this journal. These discussions can be brought to life through empirical studies and research encounters, but we do not accept papers that focus on reporting the findings from qualitative research studies.

We see our journal as contributing to the community of academics across different fields who use qualitative methods as a way of making sense of the world. We understand methods and methodology as a practice and as a perspective, and welcome contributions that reflect on and critically engage with both aspects.  Qualitative Research is a space where ideas and understandings are used to open up methodological issues for reflection and debate, and we work hard to provide a supportive environment to foster this ethos.

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Manuscript Submission Guidelines: Qualitative Research

This Journal is a member of the Committee on Publication Ethics

Please read the guidelines below then visit the Journal’s submission site http://mc.manuscriptcentral.com/qrj  to upload your manuscript. Please note that manuscripts not conforming to these guidelines may be returned.

Only manuscripts of sufficient quality that meet the aims and scope of Qualitative Research will be reviewed.

There are no fees payable to submit or publish in this Journal. Open Access options are available - see section 3.3 below.

As part of the submission process you will be required to warrant that you are submitting your original work, that you have the rights in the work, and that you have obtained and can supply all necessary permissions for the reproduction of any copyright works not owned by you, that you are submitting the work for first publication in the Journal and that it is not being considered for publication elsewhere and has not already been published elsewhere. Please see our guidelines on prior publication and note that the journal may accept submissions of papers that have been posted on pre-print servers; please alert the Editorial Office when submitting (contact details are at the end of these guidelines) and include the DOI for the preprint in the designated field in the manuscript submission system. Authors should not post an updated version of their paper on the preprint server while it is being peer reviewed for possible publication in the journal. If the article is accepted for publication, the author may re-use their work according to the journal's author archiving policy. If your paper is accepted, you must include a link on your preprint to the final version of your paper.

• What do we publish? 1.1 Aims & Scope 1.2 Article types 1.3 Writing your paper
• Editorial policies 2.1 Peer review policy 2.2 Authorship 2.3 Acknowledgements 2.4 Funding 2.5 Declaration of conflicting interests 2.6 Research Data
• Publishing policies 3.1 Publication ethics 3.2 Contributor's publishing agreement 3.3 Open access and author archiving
• Preparing your manuscript 4.1 Formatting 4.2 Artwork, figures and other graphics 4.3 Supplemental material 4.4 Reference style 4.5 English language editing services
• Submitting your manuscript 5.1 ORCID 5.2 Information required for completing your submission 5.3 Permissions
• On acceptance and publication 6.1 Sage Production 6.2 Online First publication 6.3 Access to your published article 6.4 Promoting your article
• Further information

1. What do we publish?

1.1 Aims & Scope

Qualitative Research publishes papers with a clear methodological focus. We invite scholarship that has multi-disciplinary appeal, that debates and enlivens qualitative methods, and that pushes at the boundaries of established ways of doing qualitative research. We are interested in papers that are attentive to a wide audience, that are alive to new and diverse ways of thinking about qualitative methods, and that contribute to discussions within the pages of this journal. These discussions can be brought to life through empirical studies and research encounters, but we do not accept papers that focus on reporting the findings from qualitative research studies.

We see our journal as contributing to the community of academics across different fields who use qualitative methods as a way of making sense of the world. We understand methods and methodology as a practice and as a perspective, and welcome contributions that reflect on and critically engage with both aspects. QR is a space where ideas and understandings are used to open up methodological issues for reflection and debate, and we work hard to provide a supportive environment to foster this ethos.

1.2 Article Types

Qualitative Research publishes articles, notes and reviews. Most of our submissions follow formal academic publishing guidelines, but we welcome creative and imaginative ways to explore qualitative methods and are open to conversations about the format and presentation of submissions.

We publish articles that are original, critical and creative engagements with qualitative methods. Articles must have a clear methodological focus, and not simply present findings from qualitative studies. They should be between 7,500 and 8,500 words, excluding references. Any articles that fall below or above that range will be returned.

Notes is a new format for short, engaging and imaginative submissions. It offers a more playful space for critical reflection on the craft of qualitative research. Authors are encouraged to experiment with styles of writing, and submissions can take the form of stories, anecdotes, or lessons that impart original methodological insights. Submissions should be between 2,000 and 4,000 words, excluding references.

Reviews are an important contribution to Qualitative Research. We welcome proposals that connect with the aims and the scope of our journal by offering reflective readings of key contributions to methodological debates and discussions in qualitative research. Specifically, we invite traditional book reviews that critically engage with titles and identify connections to wider literature, as well as provide a more descriptive account of content. Here, reviewers should not be afraid to (kindly) consider the significance and clarity of the contribution.

While our book reviews are usually around 800 to 1000 words and tend to focus on a single title, we also welcome longer review essays that explore two or three publications. If you would like to submit a proposal for a book review on the latest contribution or a classic of the genre, please get in touch with the editors, [email protected] . Your proposal should include a statement on why you would like to review the title(s) and how the piece relates to your own interests and expertise.

Beyond the traditional book review, we also invite reviews of events, cultural artifacts, and other dissemination platforms. Here we welcome reviews of relevant conferences and colloquia, podcasts and radio programmes, novels, and documentary series. As with the book review, the word count should be 800 to 1000 words and explicitly relate to how the event/artifact furthers debates in qualitative research. Again, please contact the editors at [email protected] with an outline of your proposal.

Please note that Qualitative Research does not accept unsolicited reviews.

1.3 Writing your paper

The Sage Author Gateway has some general advice and on  how to get published , plus links to further resources. Sage Author Services also offers authors a variety of ways to improve and enhance their article including English language editing, plagiarism detection, and video abstract and infographic preparation.

1.3.1 Make your article discoverable

For information and guidance on how to make your article more discoverable, visit our Gateway page on How to Help Readers Find Your Article Online

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2. Editorial policies

2.1 Peer review policy

Sage does not permit the use of author-suggested (recommended) reviewers at any stage of the submission process, be that through the web-based submission system or other communication. Reviewers should be experts in their fields and should be able to provide an objective assessment of the manuscript. Our policy is that reviewers should not be assigned to a paper if:

•  The reviewer is based at the same institution as any of the co-authors

•  The reviewer is based at the funding body of the paper

•  The author has recommended the reviewer

•  The reviewer has provided a personal (e.g. Gmail/Yahoo/Hotmail) email account and an institutional email account cannot be found after performing a basic Google search (name, department and institution). 

2.2 Authorship

All parties who have made a substantive contribution to the article should be listed as authors. Principal authorship, authorship order, and other publication credits should be based on the relative scientific or professional contributions of the individuals involved, regardless of their status. For any multiple-authored publication that substantially derives from the student’s dissertation or thesis the student should normally be named as first author.

        Please note that AI chatbots, for example ChatGPT, should not be listed as authors. For more information see the policy on Use of ChatGPT and generative AI tools .

2.3 Acknowledgements

All contributors who do not meet the criteria for authorship should be listed in an Acknowledgements section. Examples of those who might be acknowledged include a person who provided purely technical help, or a department chair who provided only general support.

2.3.1 Third party submissions

Where an individual who is not listed as an author submits a manuscript on behalf of the author(s), a statement must be included in the Acknowledgements section of the manuscript and in the accompanying cover letter. The statements must:

• Disclose this type of editorial assistance – including the individual’s name, company and level of input
• Identify any entities that paid for this assistance
• Confirm that the listed authors have authorized the submission of their manuscript via third party and approved any statements or declarations, e.g. conflicting interests, funding, etc.

Where appropriate, Sage reserves the right to deny consideration to manuscripts submitted by a third party rather than by the authors themselves .

2.4 Funding

Qualitative Research requires all authors to acknowledge their funding in a consistent fashion under a separate heading.  Please visit the Funding Acknowledgements  page on the Sage Journal Author Gateway to confirm the format of the acknowledgment text in the event of funding, or state that: This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. 

2.5 Declaration of conflicting interests

Qualitative Research encourages authors to include a declaration of any conflicting interests and recommends you review the good practice guidelines on the Sage Journal Author Gateway

2.6 Research Data

At Sage we are committed to facilitating openness, transparency and reproducibility of research. Where relevant, the journal encourages authors to share their research data in a suitable public repository subject to ethical and methodological considerations and where data is included, to add a data accessibility statement in their manuscript file. Authors should also follow data citation principles. For more information please visit the Sage Author Gateway , which includes information about Sage’s partnership with the data repository Figshare. For more information, including FAQs please visit the Sage Research Data policy pages .

We acknowledge this practice is not always relevant or appropriate for ethically sound qualitative inquiry, and so would encourage you to consider the unfolding ethical, legal and moral obligations linked to your research data on a case by case basis.

3. Publishing Policies

3.1 Publication ethics

Sage is committed to upholding the integrity of the academic record. We encourage authors to refer to the Committee on Publication Ethics’ International Standards for Authors  and view the Publication Ethics page on the  Sage Author Gateway .

3.1.1 Plagiarism

Qualitative Research and Sage take issues of copyright infringement, plagiarism or other breaches of best practice in publication very seriously. We seek to protect the rights of our authors and we always investigate claims of plagiarism or misuse of published articles. Equally, we seek to protect the reputation of the journal against malpractice. Submitted articles may be checked with duplication-checking software. Where an article, for example, is found to have plagiarised other work or included third-party copyright material without permission or with insufficient acknowledgement, or where the authorship of the article is contested, we reserve the right to take action including, but not limited to: publishing an erratum or corrigendum (correction); retracting the article; taking up the matter with the head of department or dean of the author's institution and/or relevant academic bodies or societies; or taking appropriate legal action.

3.1.2 Prior publication

If material has been previously published it is not generally acceptable for publication in a Sage journal. However, there are certain circumstances where previously published material can be considered for publication. Please refer to the guidance on the Sage Author Gateway  or if in doubt, contact the Editor at the address given below.

3.2 Contributor's publishing agreement

Before publication, Sage requires the author as the rights holder to sign a Journal Contributor’s Publishing Agreement. Sage’s Journal Contributor’s Publishing Agreement is an exclusive licence agreement which means that the author retains copyright in the work but grants Sage the sole and exclusive right and licence to publish for the full legal term of copyright. Exceptions may exist where an assignment of copyright is required or preferred by a proprietor other than Sage. In this case copyright in the work will be assigned from the author to the society. For more information please visit the  Sage Author Gateway

3.3 Open access and author archiving

Qualitative Research offers optional open access publishing via the Sage Choice programme and Open Access agreements, where authors can publish open access either discounted or free of charge depending on the agreement with Sage. Find out if your institution is participating by visiting Open Access Agreements at Sage . For more information on Open Access publishing options at Sage please visit Sage Open Access . For information on funding body compliance, and depositing your article in repositories, please visit Sage’s Author Archiving and Re-Use Guidelines and Publishing Policies .

4. Preparing your manuscript for submission

4.1 Formatting

• Attach to every submission a letter confirming that all authors have agreed to the submission and that the article is not currently being considered for publication by any other journal.
• Include a title page with full title and subtitle (if any). For the purposes of blind refereeing, full name of each author with current affiliation and full address/phone/fax/email details plus short biographical note should be supplied on a separate sheet. The editors will not inspect the manuscript until this information is given.
• Also for the purposes of blind refereeing, authors should replace all self-citations in the text and reference list with anonymous citations, in the style (Author, 2009), etc.
• Any citation that includes any of the authors should be replaced with (Author A and others, 2003) in the text, and in the reference list at 'Au' put 'Author A and others (2003), details withheld for peer review' followed by Author B and others, if necessary.
• Abstract of 100-150 words.
• Up to 10 key words.
• All authors must provide a full word count for their paper. The minimum word count is 7500 and the maximum is 8500 words excluding all references. Papers under the minimum and over the maximum word count will be unsubmitted.
• The journal uses notes where necessary. Historical, documentary or archival sources should be cited in endnotes. Discursive endnotes are also allowed. Endnotes are signalled in the text by superscript numbers.
• References in both the text and in any endnotes should follow Sage Harvard style. References are cited in the text thus: (author, date: page).
• An alphabetical References section should follow the text (and endnotes, if any) using the Sage Harvard system.
• All artwork, graphics, line diagrams and photographs are termed 'Figures' and should be referred to as such in the manuscript. They should be numbered consecutively. All figures should have short descriptive captions at the end of the document.
• Articles must be written in English. Use a clear, readable style, avoiding jargon. If technical terms or acronyms must be included, define them when first used.
• Non-discriminatory language is mandatory
• UK or US spellings may be used with '-ize' spellings as given in the Oxford English Dictionary (e.g. organize, recognize).
• Use single quotation marks with double quotes inside single quotes.
• Dates should be presented in the form 1 May 2010. Do not use points in abbreviations, contractions or acronyms (e.g. AD, USA, Dr, PhD)
• Qualitative Research adheres to the Sage Harvard reference style. View the Sage Harvard guidelines to ensure your manuscript conforms to this reference style.
• If you use EndNote to manage references, you can download the Sage Harvard EndNote output file .

4.2 Artwork, figures and other graphics

Qualitative Research welcomes the inclusion of figures. There is no word count equivalent for figures, but images should be carefully selected and will be reviewed for their quality and suitability. 

For guidance on the preparation of illustrations, pictures and graphs in electronic format, please visit Sage’s Manuscript Submission Guidelines .   

Figures supplied in colour will appear in colour online regardless of whether or not these illustrations are reproduced in colour in the printed version. For specifically requested colour reproduction in print, you will receive information regarding the costs from Sage after receipt of your accepted article.

4.3 Supplemental material

This journal does not currently accept supplemental files.

4.4 Reference style

Qualitative Research adheres to the Sage Harvard reference style. View the Sage Harvard  guidelines to ensure your manuscript conforms to this reference style.

If you use EndNote    to manage references, you can download the  Sage Harvard EndNote output file ..

4.5 English language editing services

Authors seeking assistance with English language editing, translation, or figure and manuscript formatting to fit the journal’s specifications should consider using Sage Language Services. Visit Sage Language Services  on our Journal Author Gateway for further information.

5. Submitting your manuscript

Qualitative Research is hosted on Sage Track, a web based online submission and peer review system powered by ScholarOne™ Manuscripts. Visit http://mc.manuscriptcentral.com/qrj to login and submit your article online.

IMPORTANT: Please check whether you already have an account in the system before trying to create a new one. If you have reviewed or authored for the journal in the past year it is likely that you will have had an account created.  For further guidance on submitting your manuscript online please visit ScholarOne Online Help .

As part of our commitment to ensuring an ethical, transparent and fair peer review process Sage is a supporting member of ORCID, the Open Researcher and Contributor ID . ORCID provides a unique and persistent digital identifier that distinguishes researchers from every other researcher, even those who share the same name, and, through integration in key research workflows such as manuscript and grant submission, supports automated linkages between researchers and their professional activities, ensuring that their work is recognized. 

The collection of ORCID IDs from corresponding authors is now part of the submission process of this journal. If you already have an ORCID ID you will be asked to associate that to your submission during the online submission process. We also strongly encourage all co-authors to link their ORCID ID to their accounts in our online peer review platforms. It takes seconds to do: click the link when prompted, sign into your ORCID account and our systems are automatically updated. Your ORCID ID will become part of your accepted publication’s metadata, making your work attributable to you and only you. Your ORCID ID is published with your article so that fellow researchers reading your work can link to your ORCID profile and from there link to your other publications.

If you do not already have an ORCID ID please follow this link to create one or visit our ORCID homepage to learn more.

5.2 Information required for completing your submission

You will be asked to provide contact details and academic affiliations for all co-authors via the submission system and identify who is to be the corresponding author. These details must match what appears on your manuscript. The affiliation listed in the manuscript should be the institution where the research was conducted. If an author has moved to a new institution since completing the research, the new affiliation can be included in a manuscript note at the end of the paper. At this stage please ensure you have included all the required statements and declarations and uploaded any additional supplementary files (including reporting guidelines where relevant).

5.3 Permissions

Please also ensure that you have obtained any necessary permission from copyright holders for reproducing any illustrations, tables, figures or lengthy quotations previously published elsewhere. For further information including guidance on fair dealing for criticism and review, please see the Copyright and Permissions page on the  Sage Author Gateway .

6. On acceptance and publication

6.1 Sage Production

Your Sage Production Editor will keep you informed as to your article’s progress throughout the production process. Proofs will be made available to the corresponding author via our editing portal Sage Edit or by email, and corrections should be made directly or notified to us promptly. Authors are reminded to check their proofs carefully to confirm that all author information, including names, affiliations, sequence and contact details are correct, and that Funding and Conflict of Interest statements, if any, are accurate.

6.2 Online First publication

Online First allows final articles (completed and approved articles awaiting assignment to a future issue) to be published online prior to their inclusion in a journal issue, which significantly reduces the lead time between submission and publication. Visit the Sage Journals help page  for more details, including how to cite Online First articles.

6.3 Access to your published article

Sage provides authors with online access to their final article.

6.4 Promoting your article

Publication is not the end of the process! You can help disseminate your paper and ensure it is as widely read and cited as possible. The Sage Author Gateway has numerous resources to help you promote your work. Visit the Promote Your Article  page on the Gateway for tips and advice. 

7. Further information

Any correspondence, queries or additional requests for information on the manuscript submission process should be sent to the Qualitative Research editorial office. Please email: [email protected]

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Qualitative Research

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New Society, New Role of Parents: How Parent's Role Affects Millennials Perspective of Riau Malay Culture

Examining linguistic techniques and communication design strategies in pakistani drug trafficking networks, review of altaf fatima's novel "chalta musafir": a study from the context of east pakistan's tragedy, make a submission, information.

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About Journal

American Journal of Qualitative Research (AJQR)  is a quarterly peer-reviewed academic journal that publishes qualitative research articles from a number of social science disciplines such as psychology, health science, sociology, criminology, education, political science, and administrative studies. The journal is an international and interdisciplinary focus and greatly welcomes papers from all countries. The journal offers an intellectual platform for researchers, practitioners, administrators, and policymakers to contribute and promote qualitative research and analysis.

ISSN: 2576-2141

Call for Papers- American Journal of Qualitative Research

American Journal of Qualitative Research (AJQR) welcomes original research articles and book reviews for its next issue. The AJQR is a quarterly and peer-reviewed journal published in February, May, August, and November.

We are seeking submissions for a forthcoming issue published in February 2024. The paper should be written in professional English. The length of 6000-10000 words is preferred. All manuscripts should be prepared in MS Word format and submitted online: https://www.editorialpark.com/ajqr

For any further information about the journal, please visit its website: https://www.ajqr.org

Submission Deadline: November 15, 2023

Announcement 

Dear AJQR Readers, 

Due to the high volume of submissions in the American Journal of Qualitative Research , the editorial board decided to publish quarterly since 2023.

Volume 8, Issue 2

Current issue - in progress.

The COVID-19 pandemic has highlighted and exacerbated the difficult juggling act women in the U.S. have to do between parenting their children and working outside the home. The pandemic has also led to a decline in maternal mental health, particularly among mothers with young children, mothers of color, and those with previous mental health issues. The authors noted these experiences in their own lives as mothers with children and observed them in the lives of the women around them. These observations informed the design of this narrative inquiry study, in which we used semi-structured interviews to explore mothers’ shifting ideas and experiences of mothering, work, and family life during a global pandemic. We used creative analytic practice (CAP) to compose reflexive researcher conversations around the interview data that enabled us to highlight nuances in the data, show more transparently our meaning-making, make visible our researcher subjectivities, show uncertainties about aspects of data interpretation, and create a more accessible data representation.

Keywords: Mothering, COVID-19 pandemic, U.S. women, Narrative inquiry, Creative analytic practice.

The COVID-19 pandemic put France’s healthcare system under extreme tension and led to significant levels of stress among healthcare professionals in general and nurses in particular. Research has shown how these elements affected nurses’ physical and psychological health and manifested as insomnia, anxiety, and depressive syndromes. The present qualitative study aimed to explore the lived experiences of France’s nurses as a function of their level of exposure to the virus and whether they worked in the hospital sector or practiced privately in the community during the pandemic’s first wave. It also sought to describe the resources nurses used to maintain their overall health. We administered 19 qualitative interviews to 19 nurses in the autumn of 2021. The present study revealed that nurses were subjected to significant stress during the pandemic. Our data analysis enabled us to draw out three principal themes: 1) Being on the edge in stormy period ; 2) Personal impact on several levels and 3) Floating together and learning. There were no significant differences between the groups that were subjected to different levels of exposure to COVID-19. All the groups were affected by the pandemic that struck a healthcare system that was already systematically fragile. Nurses were severely tested by the COVID-19 pandemic, but their consciousness of the importance of their role grew, despite questioning what meaning there was to their profession, perhaps even to their lives . The trauma still felt fresh 18 months later, during the interviews, and this cannot be ignored in future healthcare policymaking .

Keywords: COVID-19, nurses, salutogenesis, stressors, health resources.

Annual mammography screening is recommended by the US Preventive Services Task Force (USPSTF) and American Cancer Society (ACS) to reduce mortality through early detection of breast cancer. In rural Appalachia, rates of later-stage breast cancer incidence and mortality are higher than national averages. We explored the ways that providers and staff at breast cancer screening facilities employed novel approaches to overcome patient- and facility-level barriers to access to breast cancer screening in the Appalachian region. We conducted 23 semi-structured interviews with 28 clinical providers and staff of breast health facilities in Appalachia. Themes reflect how limiting features of breast screening facilities influenced access to care; the way patient-level barriers presented challenges to access to breast screening; and that external and regulatory forces presented obstacles to access to care. In addition, the unique geographical and geographical attributes of the Appalachian region shaped access and adherence to mammography screening recommendations. Thematic findings highlight that facilities implemented patient-centered strategies to overcome access-related barriers. Results may inform the ways breast cancer screening facilities address suboptimal access to breast health screening. They may also inform future resource allocations to enable facilities to reach breast cancer screening performance goals.

Keywords: rural health, breast cancer, preventive health care, women’s health.

Paternal parenting affects child development; hence, the father’s absence has a deleterious effect on the male child. The literature on parenting shows limited focus on how parenting impacts children by gender. This qualitative hermeneutic phenomenological study investigated the key question, “How does a father’s absence during childhood influence a man’s subsequent parenting of his son(s)?” An integrated theoretical framework was used to guide the study: Parenting Style Theory, Social-Cognitive Theory, and Bioecological Systems Theory. Nine Trinidadian males aged 20 to 35 years who were parenting sons were recruited to participate using snowball sampling. Data on men’s adverse childhood experiences were gathered using semi-structured interviews. Content and thematic analyses were done using DELVE software. Key findings include the influence of stereotypical cultural constructs, the church’s critical role in addressing childhood trauma, the transmission of father absence across generations, and the relationship between neurodevelopment and adverse childhood experiences. Implications of these findings will benefit child and adolescent advocacy, inform policymaking, aid professional intervention in mental health and education, and strengthen familial systems and ecclesiastical contexts. Future research should explore the lived experiences of men who crave emotional connection with their sons yet struggle with the stereotypical cultural perception of manhood.

Keywords: father absence, brain development, childhood trauma, intergenerational, the transmission of behavior.

The purpose of this qualitative transcendental phenomenological study was to understand the essence of the shared lived experiences of undergraduate college students with anxiety disorders at two universities in the Southeastern United States. Ellis’s cognitive theory, rational emotive behavior therapy, guided the study which took place at a mid-sized, public nonsectarian university and a small, private liberal arts college. The central research question elicited rich data regarding the shared lived experiences of the study participants. The four research sub-questions address participants’ perceptions regarding the impact of their disorders on their lifestyles and academic performance. A purposeful criterion sample was used to select the participants who completed a questionnaire, open-ended individual interviews, a single focus group interview, and participant journals. Phenomenological reduction was used to create a composite integration of meaning and the essence of the lived experience of the participants. Data results identified five themes: (a) social fears, (b) stressor issues, (c) generational issues, (d) academic performance barriers, and (e) institutional education and accommodation preferences.

Keywords: Alexithymia, anxiety, disorder, qualitative, stressors

School shootings are traumatic events that can lead to anxiety, depression, and post-traumatic stress disorder among students who experience these events. It is important to find effective strategies to help students cope with their return to school, as well as their anxiety and stress levels while on campus. There exists a gap in the literature on the effects of therapy dogs on students who have witnessed a school shooting. This current study used a retrospective mixed-methods survey that was sent to recent graduates of Marjory Stoneman Douglas High School (located in Parkland, Florida) who witnessed the February 2018 shooting. Data were collected to assess how the therapy dogs affected students' willingness to return to school and their stress/anxiety levels while on campus. Identified themes indicated that the therapy dogs helped with anxiety levels, stress levels, and overall moods of Marjory Stoneman Douglas High School students. These findings provide important implications for community leaders and school administrators who want to promote healing and well-being in a community that has experienced violence.

Keywords: Therapy dog, school shooting, community violence.

Identifying the relation between the processes of programming and foreign language writing may lead to new directions for programming language and natural language focused instructional design. The present qualitative case study supported by quantitative data investigated foreign language writing experiences of computer engineering students taking an object-oriented programming course. Forty-five sophomores learning programming and academic English simultaneously in a foundation university in Ankara, Turkey, were selected purposefully for the case study. There were two data sources (students’ opinions and documents) and three data collection tools (a semi-structured interview, a short diary, and a composition. In terms of the findings of the research, four themes were obtained; however, only the use of metacognitive strategies will be explained in detail due to the length of the study. Participants stated that they feel the positive effects of programming experience on the use of self-evaluation strategy and that there are similarities and differences between the processes of programming and foreign language writing. Participants’ views on the effect of programming on foreign language writing did not differ according to their writing and programming performance scores. Participants stated that programming experience may have an effect on the use of metacognitive language learning strategies in the writing process. Upon analyzing participants’ comments, it is understood that programming experience does not hinder the use of metacognitive strategies but has a role in supporting and reinforcing their use. It is suggested that multiple case studies be done for similar views on the effects of programming and that each finding be proven by quantitative studies.

Keywords: programming, foreign language writing, metacognitive strategies.

The significance of participatory decision-making in educational institutions is widely acknowledged as essential in school management and administration. This study aimed to determine how involved teachers are in making decisions in their schools and what role they think they play in shaping different parts of school policies and procedures. It also looked at their perspectives on how decisions made by others are carried out in schools. Semi-structured interviews with 10 secondary school teachers focused on teachers' role in decision-making related to their routine school tasks, strategic decision-making, participatory role in making school decisions, and their willingness to participate in decision-making. This study showed that teachers' low participation is attributed to their shared desire to be involved in school management and administration-related decisions. Teachers expressed that participatory school-based decision-making can promote collaboration and collectivism among the school staff, and it plays a significant role in shaping their work satisfaction and motivation. By gaining insights into teachers' perspectives, this study aims to contribute to the broader understanding of participatory school decision-making in the Rwandan secondary education system and communicate potential improvements for fostering a more collaborative and inclusive educational environment.

Keywords: teachers’ perceptions, qualitative research, decision-making, secondary schools.

Advancing the entrepreneurship ecosystem of India: A qualitative study with Chevening Fellows

• Published: 26 December 2023

Cite this article

• Kamal Gulati 1 ,
• Amrik Sohal 2 ,
• Tharaka de Vass 2 &
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Using social cognitive theory as a guide, this research seeks to explain the perceptions of current and aspiring Indian entrepreneurs. A multiple case study approach using 19 interviews with intellectuals provided qualitative data to conduct a cross-case analysis of the two groups with the qualitative analysis software NVivo. Rare insights from current and aspiring opportunity-motivated entrepreneurial Chevening Fellowships from a predominantly necessity-motivated context offer valuable insights into entrepreneurship in India. The findings reveal what entrepreneurship means to established entrepreneurs, their motivation for embarking on the entrepreneurial journey, the skills they require to be successful, the challenges they face and their strategies to sustain are mostly different to what aspiring entrepreneurs believe how it would be. Compiled recommendations may help strengthen the entrepreneurial ecosystem, particularly in developing economy contexts, to help improve the 10% startup success rate.

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Acknowledgements

Authors gratefully acknowledge the support of Chevening fellows who consented to participate in this study, Chevening Secretariat, Foreign Commonwealth & Development Office, Prof. Richard Briant, University of Oxford, Prof. John Hoffmaire, Chairman, Oxford Pharmaceuticals, Ms. Sarah Fallon, Regional Director, Science and Innovation, British High Commission New Delhi, Ms. Supriya Chawla, Head Chevening Scholarships India for their support.

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Gulati, K., Sohal, A., de Vass, T. et al. Advancing the entrepreneurship ecosystem of India: A qualitative study with Chevening Fellows. Asia Pac J Manag (2023). https://doi.org/10.1007/s10490-023-09940-2

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Open access for community partners, impactful outputs for scholars: Leveraging scholarly communication movements to enhance reciprocity in community based research

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Many corners of the academy are actively working to build bridges between research in the ivory tower to outcomes and needs in the community. Our study seeks to unify two such efforts – community-based/service-learning research and open access scholarly communication. Open access is an implicit value in community-based and service-learning research, and is part of the symbiotic relationship value, but has not been explicitly discussed, framed, or embraced as a value or goal. We explore existing literature on the desire for research-informed practices from community members and practitioners, the current state of open informational practices from scholarly publications dedicated to work happening in community spaces, and make recommendations for good practices for editors, publishers, researchers, and institutions looking to link the work of scholars to the needs of the community and evaluate impact.

Keywords: Open Access, Reciprocity, Scholarly Impact, Community Impact, Community Based Research, CBR, Service Learning, Scholarly Communication

Ivey, O. & Borchardt, R., (2024) “Open access for community partners, impactful outputs for scholars: Leveraging scholarly communication movements to enhance reciprocity in community based research”, Michigan Journal of Community Service Learning 30(1). doi: https://doi.org/10.3998/mjcsl.3682

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Published on 26 apr 2024, peer reviewed, creative commons attribution-noncommercial-noderivs 4.0, introduction.

From the cooperative extension service at public land grant institutions to the vision and values statements of private liberal arts institutions, and the mission of community colleges, engagement with communities beyond the walls of the academy are notable values of higher education. Service-learning, and community-based research (CBR) are important tools for institutions of higher learning to bridge town-gown divides, enhance student learning, and make a case for the value of higher education. While these values of community engagement have deep roots, the 21st century has seen significant growth in the deliberate articulation and promotion of community integration into classroom activities and research. This growth can be seen in the inclusion of service-learning as a “high impact practice” by the American Association of Colleges & Universities ( Kuh, 2008 ) and the growth of organizations like Campus Compact, which launched with three founding institutions in 1985 and now has state and regional affiliates serving and organizing hundreds of institutions ( Campus Compact, 2022 ). Stated values from CBR and service-learning scholars include reciprocity and mutual benefit ( Israel et al., 1998 ; Maiter et al., 2008 ). Simultaneously, the open access movement in scholarly communication has worked to open previously paywalled scholarship to all interested readers. The open access movement has its roots in the removal of barriers, particularly subscription barriers to access research. This helps combat unsustainable journal pricing while satisfying funder mandates to openly publish funded research for the benefit of the funder and the public or broader community it serves ( BOAI, 2002 ; Larivière et al., 2015 ). The mutual benefit and reciprocity values of CBR and the public benefit of open access research seem well aligned. Our research seeks to determine if the definition of reciprocity has come to include open access publishing by CBR journals by giving access to published scholarship to the communities who helped produce it. We will further explore how these scholarly publishing practices do or do not meet the needs of scholars as they build their careers in academic research institutions. Finally, we will make recommendations on leveraging the knowledge and tools of both movements to further advance the value each.

Key Definitions and Concepts

Over the years a range of vocabulary and jargon has grown to describe work that ties the teaching and research goals of the academy to their communities. While each term has its own purpose and nuance, not all town-gown relations are in scope for this paper. Likewise, open research principles are far-reaching in its aims and formats. Our emphasis will be on the following:

Community-Based Research (CBR)

As defined by Strand et al. ( 2003 ) in Community-Based Research in Higher Education “CBR is a partnership of students, faculty, and community members who collaboratively engage in research with the purpose of solving a pressing community problem or effecting social change” (p. 3). Of all the forms of working beyond the boundaries of campus, CBR taps directly into the research mission of colleges and universities, naturally raising questions about how these research findings are published and who has access. Some publications, institutions, and research methodology guides use the terms Community Engaged Research, Community Based Participatory Research , or Community Based Qualitative Research . These modifiers each seek to emphasize the inclusive and active nature of research with the community. For our purposes, we will discuss CBR as inclusive of these variants.

Service-Learning and Extension Service

Service-learning is “a form of experiential education in which students engage in activities that address human and community needs, together with structured opportunities for reflection designed to achieve learning outcomes.” ( Jacoby & Howard, 2014, p. 2 ). The value of reciprocity – that students and community partners find mutual benefit in the interaction – is deeply emphasized in service-learning. On the campus side of the hyphen, service-learning is more deeply rooted in student learning than the pursuit of research. Even so, the reflection piece results in written student outputs suitable for publication, and for the scholarship of teaching and learning; service-learning provides a rich opportunity to study the pedagogical and community benefits of the practice. For this reason, there are scholarly publications outlets with a service-learning focus and we have chosen to include those in our scope of review, and given the shared value of balancing community and academic needs with benefit for all.

Cooperative Extension Service

Established by the Smith-Lever Act ( 1914 ), public land grant universities have established cooperative extension services to use the knowledge built by the academy to support their communities (7 U.S.C. 341 § 1). While restricted to universities with these programs, there are journals dedicated to extension service work and are in scope for this review.

Open Access Publishing

Open access (OA) is a complex and ever-changing area of scholarly communications with a clear goal: making information openly available and accessible. Open access publishing arose in response to subscription-based models of scholarly publication, most notably with journal articles. For many years, increases in subscription rates have outpaced inflation, resulting in unsustainable subscription pricing in order to access paywalled content, and leaving institutions or individuals who cannot afford subscriptions without access to needed scholarly literature ( Larivière et al., 2015 ). Many models of open access publication have emerged as an alternative to the subscription-based model of access, all of which provide an alternative structure of financial support for journals other than the traditional subscription-based model.

Today, for-profit publishers see some open access models as a promising revenue stream to supplement subscription revenues ( Butler et al., 2022 ). For example, Elsevier’s parent company, RELX, noted in its 2022 annual report that “pay-to-publish open access articles [are] growing particularly strongly” ( 2023. ). Initiatives like OA2020, paired with a rise in library subscription cancellations, mean that open access funding is increasingly important to publishers in order to maintain or increase revenues ( n.d. ). However, the sustainability of different open access models is a growing concern for those who financially support open access publishing, including libraries and research funders ( Willinsky & Rusk, 2019 ). Publishing is not free (though it does rely on unpaid labor and contributions), and as a result, open access publications must be supported financially. Financial and sustainability issues have forced many independent journal publications to sign deals with for-profit publishers, who manage and financially support the reviewing, editing, publishing, indexing, and marketing on behalf of the journal ( Fyfe et al., 2017 ). However, this support comes at the expense of control: in open access terms, this often means that the journal cannot always freely decide on how to make its content open access, if it is an option offered by the publisher at all ( Clarke, 2020 ).

Different open access publication models are often described with color terminology, though these terms are not always straightforward. For the purposes of this research, the publications studied fell into three primary categories. The first is diamond, also called platinum, which designates a journal where all articles are openly available, and the author does not pay any fees for publication. These journals are funded through other means – for many university presses, these costs are incorporated into a university’s budget ( Hudson Vitale & Ruttenberg, 2022 ). This model is considered to be the most equitable model for both readers and authors ( Meagher, 2021 ). Second is hybrid, or “pay to publish”, which is a dominant model among profit-driven publishers – in this model, a journal requires a subscription in order to access the full contents, but authors may choose to pay a publication fee to make their article openly available ( Piwowar et al., 2018 ). Thus, a hybrid journal will have a mix of articles that are open or closed to non-subscribers ( “Hybrid Open-Access Journal,” 2022 ). The third category is green OA – this is a broad set of criteria relating to the ability to store a version of the research article in a research repository, personal web site, or other approved website. Green OA is largely dictated by the journal and/or publisher – many publishers will only allow a prior version of an article, such as the author accepted manuscript rather than the published version of record and may impose an embargo period before this version of the research can be made publicly available ( Open Access Glossary , n.d. ).

Data on overall rates of open access publishing is imprecise, given the range of definitions and methods used to collect the data. A 2018 study estimated that, at a minimum, 28% of the scholarly literature published between 1950 and 2015 is OA with year-over-year data showing a steady increase including exponential growth beginning in 2000 ( Piwowar et al., 2018 ). However, open access growth varies by discipline, leaving CBR and service-learning research out of the analysis due to its interdisciplinary nature ( Maddi, 2020 ; Severin et al., 2020 ).

Discussions in the literature on why journals – or in the case of hybrid, individual authors – choose to publish open access tend to focus on scholarly impact and citation metrics, disciplinary norms, or the demographic characteristics of the authors ( Langham-Putrow et al., 2021 ; Piwowar et al., 2018 ; Severin et al., 2020 ; Zhu, 2017 ). However, some research has been devoted to why specific disciplines may have a stronger imperative to publish open access due to the needs of their audience(s) ( Wirsching et al., 2020 ).

Knowledge Sharing and Impact Assessment for Scholars and Community Partners

The results of campus-community scholarly endeavors matter to both parties, necessitating thoughtful communication and assessment strategies. Comprehensive program assessment is not straightforward and assessment tools that have been developed and honed over time tend to leave published scholarly work out of their scope of review. Building on early attempts at impactful measures focused on student learning, Portland State University developed a framework that is inclusive of students, the institution, faculty, and community ( Driscoll et al., 1998 ; Gelmon et al., 2018 ). While this expansion of review adds value to our understanding of community-engaged work, the continued absence of the distribution of information/knowledge as a specific outcome leaves a gap in our understanding if community partner information needs are being fulfilled. While researchers may see publication as primarily impacting academia, community and practitioner partners may feel excluded from the published results of the partnership, particularly when research is locked behind a subscription-based ‘paywall’.

The gap between scholarly publications and assessment of community and service-learning partnerships partly arises from a lack of attention, or articulation of the need, to share information. Additionally, institutional and academic research evaluation models also encourage the researcher to think of their impact in two entirely different contexts: one is how their research impacts community partners – which is often included as a measure of service – and an entirely separate context is the evaluation of the researcher’s scholarly impact. These evaluations are most commonly associated with promotion, tenure and/or rank (PRT), where scholarship and service are usually separated and evaluated using different scales and levels of expectation and reward. In fact, pre-tenured faculty interested in research methods that engage the community report facing pressure to delay such work in favor of more traditionally valued scholarship ( Changfoot, 2020 ). Even as engaged scholars have made headway in aligning institutional values of service and engagement to PRT policies, advocates see “a long way to go to fully align promotion and tenure policies to encourage and support scholarly outreach and engagement.” ( D. M. Doberneck, 2022, p. 15 ). Evaluation of scholarship, or “research impact”, has been traditionally dominated by bibliometrics, which are quantitative indicators based on citation counts designed to showcase ‘impact’ narrowly focusing on other academics as the sole impact audience ( Chin Roemer & Borchardt, 2015 ). The absence of non-scholarly audiences in scholarship evaluation is the operationalization of a value deficit where community impact is severely downplayed if not entirely absent from the traditional scholarly evaluation model. This separation of community impact and scholarly impact is clearly documented in advice for getting tenure for community-engaged scholars, who encourage researchers to publish “translated” research outputs, and separately recommend publishing in high-impact journals ( Morgridge Center for Public Service, n.d. ). Similarly, one of the most commonly-used rubrics for evaluating the institutionalization of service-learning, presented by Furco ( 1999 ), the rubric mentions promotion and tenure, but does not discuss publications as a measure of service-learning.

The scholarly evaluation process advocates and research translation advocates alike fail to fully acknowledge or assess the demand for access to published articles coming from the broader community. The community based research literature promotes alternative forms of information dissemination for community: community meetings, blog posts, op-eds, policy briefs, or even skits are recommended research outputs for meeting community information needs ( Hacker, 2013 ; Strand, 2003, p. 115 ). This “translation” of research is commonly assumed to be necessary to overcome a perceived language barrier to accessing publications. However, communities are diverse in their information needs and some describe the challenge as one of access and timing rather than intellectual accessibility. In Karen Hacker’s book chapter, Translating Research into Practice: View from Community , community partners like Alex Pirie expressed frustration with the time lag between data collection and publication/dissemination of results. ““The time delay between the conclusion of a research project and the publication of papers is always a problem. This is a period of time when, because of the constraints of journal publication, there is a virtual embargo on the results except in the most general way, and it drives the community side nuts. ‘Hey, we know this, we want to do something with/about it!’” Alex Pirie, Somerville, MA” ( 2013, p. 12 ). Similarly, when nursing home social workers were asked what academia could do to support their daily work, they asked that academic research not be kept behind a paywall ( Miller et al., 2022 ). This demonstrates an unmet need for access to scholarly research publications that translated outputs cannot meet. This unmet need may arise from considering community partners as a homogenous population, rather than separately considering the information needs of subgroups with more differentiated information needs, such as practitioners and other professionals. While translation materials can play an important role in meeting the diverse audiences of CBR where they are, researchers and journal editors should not assume an absence of interest in access to published scholarly work.

Given the assessment that open access movements and CBR scholars have shared values of information sharing with communities beyond the academy, and a commitment to mutual benefit for all parties, we wanted to examine the degree to which community-based research and service-learning journals are fulfilling these values. In particular, we assess the extent to which they are identifying practitioners and other community members as audiences, making their research openly available to these audiences, and assisting researchers in measuring their impact. To do this, a range of sources was analyzed to identify a corpus of journals in these fields, then collected information about them including the publisher, open access policy, and stated target audiences. Our results show that open access practices in service-learning and community-based research journals exceed the norm for scholarly publishing but is still not a standard expectation for journals in the field. Further, openness is aligned with community service and service-learning research values, but not always explicitly articulated or adopted by the fields. Finally, tools for scholars to assess their impact through these venues varies widely. We discuss why open access is vital to CBR and service-learning partnerships and suggest potential pathways to fully closing the loop between scholars and their community partners in ways that would ultimately benefit both, as well as the development of reward systems for researchers that would value open publishing as a community impact practice.

We started with identifying scholarly journals focused on community service or service-learning. This began by identifying a corpus of journals that fall within our parameters: an appropriate content focus, peer-reviewed, and actively publishing content. Two Campus Compact resources provided a total of 27 journals ( D. Doberneck, 2021 ; “Journal Section Comparison Table,” n.d. ). We added 11 community-based qualitative research journals from a book focused on the topic ( Johnson, 2017 ). Illinois State University offers its faculty and students a list of publication opportunities, largely affirming the Campus Compact list while giving us two additional titles to include ( 2022 ). A total of 6 journals were removed from our list due to being out of scope (1, not peer-reviewed) or no longer in active publication (5), giving us a total of 34 journals for our analysis. One publication was erroneously listed in Campus Compact as “Journal of Health Sciences and Extension” but is included in our study under its correct title, “Journal of Human Sciences and Extension”. For a complete list of journals included in the study, see Appendix A.

We identified categories of information we wanted to gather for each journal in order to learn more about the journal’s stated mission, scope, history, open access policy, available impact metrics, and how this information reflected the journal’s stated values, audience, and intentions.

For each publication we used a variety of sources to gather the information for the identified categories. We used each journals’ website when possible, gathering data on how the journal itself made the information available to readers and authors. Websites were used to collect information for: publisher, open access policy, targeted audience, targeted authors, article-level impact measures/metrics, any indications of policy change regarding openness of content when available, and any other relevant notes or content we discovered. To collect narrative data on intended authors and audience, we reviewed and collected relevant statements from the journal’s stated aims and scopes, missions, and journal introductions. In some cases, we also looked up the journal introduction found in volume 1, issue 1: where editors often expanded on who the journal was for and what it hoped to achieve. We gathered journal-level metrics from Scopus (CiteScore), Google Scholar Metrics (H5-index), and Cabell’s Publishing (acceptance rate). Date of first issue was pulled from Ulrichsweb Global Series Directory.

The resulting dataset was compiled and analyzed in an Excel spreadsheet. Most variables were easily observed on the journals’ website, including open access, publisher, and impact metrics. To establish author and reader intent, statements were copied from the “about us” or “aims and scope” sections of the websites and coded according to the themes that emerged: Mentions multi/interdisciplinary contributors, emphasis on methodology, by/for students, mentions practitioners or community partners, discipline specific scholars, and targets new or emerging scholars. Peer debriefing, pulling content from websites during a confined time period, and researchers’ expertise in scholarly communications were employed to aid in establishing credibility ( Anfara et al., 2002, p. 30 ). For several categories including metrics and open access status, criteria were established based on the authors’ expert analysis of the journal website information.

Open Access Status

Overall, the set of journals is predominantly open – the most common model is diamond, with a variety of university or society publishers hosting these titles, with 25/34 titles operating under this model ( Figure 1 ). The remaining nine titles were all considered to be hybrid titles, and all had various conditions set for green OA for ‘closed’ articles, or those published articles where authors do not pay to make their article open.

Figure 1 Dominance of Open Access Models.

We did not attempt to record the range of institutions hosting diamond titles, but grouped them together as “university presses”, which accounted for 71% of titles ( Figure 2 ). Most of these university presses are mostly considered to be small or medium-sized university presses. A total of 8 titles, or 23% of those analyzed, are published through a for-profit publisher: four titles are published by Sage, three titles published by Taylor & Francis, and one title is published by Wiley. Sage, Taylor & Francis, and Wiley are all “top five” for-profit publishers in terms of market share and profit ( Larivière et al., 2015 ). In addition to the for-profit titles, one non-profit title is published by Project MUSE, a journal subscription package owned by Johns Hopkins with over 700 individual journals, and one is published by a professional society.

Figure 2 Dominance of Journal Publishers or Content Hosts.

Journal Level Metrics

The overall rate of article level metrics for the journals was low. The most common metric was Google Scholar’s H5-index, which was available for 13 or 38% of the journals, followed by Scopus / Elsevier’s CiteScore, which was available for 11 or 32% of the journals, and we found acceptance rates for eight or 24% of the journals ( Figure 3 ).

Figure 3 Availability of Journal-Level Metrics.

15 of the 34 journals, 44%, did not have any of these metrics. The 11 journals indexed in Scopus were associated with a total of 12 separate subject classifications, with education the only subject appearing for more than two journals. The breakdown of subjects and individual titles in each classification are shown in Table 1 .

Prevalence of Journal Categories for Journals Indexed in Scopus

Article Level Metrics

Publicly-available article level metrics were available for 50% of the journals, with views (29%) and downloads (26%) being the most common of the available metrics ( Figure 4 ). Two vendors that collate various sources of altmetrics, Altmetric and PlumX, were available for four (12%) and three (9%) of the journals respectively. Citations, available for seven (21%) of the journals, came from different sources, such as CrossRef. The lack of altmetrics standardization between journals appears to be a result of the variety of publishers, who use a diversity of open access platforms to host content, that likely drove the availability of these metrics. More careful analysis of hosting platforms would be needed to verify this observation, but was outside the scope of this study.

Figure 4 Availability of Article-Level Metrics.

Targeted Authors and Audience

For each journal included in the study, we pulled language from their website that indicated their intended contributors and audiences. While there is no standardized place for this information, “about us,” “aims and scope,” or mission/vision statements were common sources. In some cases, authorship criteria or peer review standards illuminated explicit intent to include community partners or practitioners as both contributors and readers. For example, the Journal of STEM Outreach describes itself as “a bridge between the STEM and education world,” demonstrating a desire for academic and practitioner readership, and the Interdisciplinary Journal of Partnership Studies seeks “interdisciplinary contributions from both scholars and practitioners worldwide,” indicating a desire for authors from many disciplines, community partners, with a global audience. Practitioners and community partners are more likely to be identified as readers than contributors, with 14 of the journals mentioning this group as either co-authors or potential contributors and 26 identifying them as beneficiaries of the content. Nine journals have at least a partial focus on advancing CBR methodology. Two of these, however, stand out in their commitment to including community partners through all aspects of the research process. Both Progress in Community Health Partnerships: Research Education and Action and Gateways: International Journal of Community Engagement and Research encourage the voices of community leaders as contributors and co-authors, and they also include them in their pool of peer reviewers. Two others from our sample – Collaborations: A Journal of Community-Based Research and Practice and Engage! Co-Created Knowledge join in this practice, for a total of four journals with peer reviewers outside of traditional academic institutions.

While the review sought to understand the roles faculty researchers and community partners played in the production of, and audience for, the research, other groups emerged as an intentional focus. Six of the journals target students, and five explicitly mentioned emerging scholars. In some cases, this took the form of a dedicated section of journal contents, while other journals instead encouraged co-authorship. This holistic approach breaks down not only town-gown barriers but acknowledges every member of the research and learning process of the value their voice brings to the table.

The journals selected for this study have OA practices that far exceed the norm for academic publishing. This shows consistency between the reciprocity values of CBR and the publishing practices of journals devoted to publishing the scholarly outputs of scholar-community relations. While overall values alignment is strong, a few exceptions stand out when comparing the target author and audience analysis to publishing practice. One of the journals that recommends the inclusion of community partners as authors publishes on a hybrid/green model. Similarly, 19% of journals that encourage community readership are hybrid rather than diamond.

If community engagement in authorship and readership cannot fully predict diamond open access status, it is worth considering other factors such as timing and publishing platforms. Severin, et al. note three distinct phases of OA, arcing from formation in the 1990s to transformation from the early 2000s to the mid-2010s, to stabilization running through the present ( 2020 ). The mean start date for the journals under review was 2004. Indeed, some older publications show a transition to OA in keeping with the times, having come to life under traditional subscription models. This can be seen with Journal of Extension ( 1963 ) where the inaugural volume was sponsored by a university consortium with the expectations that subscription fees would cover the cost moving forward, and Michigan Journal of Community Service Learning (1994) which initially funded itself through subscriber fees with content openly available after a six month embargo, shifting to a fully open access model with Volume 23 Number 1 in 2017 ( Ferguson & Carter Jr., 1963 ; Howard, 2017 ).

A bigger factor currently, however, seems to be the nature of the publisher. We saw near-perfect alignment between open access status and publishing model – all of the journals published with a for-profit publisher are hybrid/green publications, as well as Project MUSE, which is published by a university press, Johns Hopkins, but operates more like a traditional content publisher due to the size of Project MUSE’s journal portfolio. Thus, we classified Project MUSE separately as a non-profit publisher, distinct from the for-profit and other university press publications. Conversely, all titles published by a university press are diamond publications. These two results show that OA practices are influenced by both date of journal establishment as well as publisher.

Both journal-level and article-level metrics are somewhat limited for the set of journals used in this study. Ultimately, this limits the extent to which researchers publishing in these publications can demonstrate how their research publications are impacting scholarly and other intended audiences, however it does underline the importance for community-based researchers to demonstrate research impact in a way that is often distinct from other, more traditional approaches to impact, such as the use of journal-level metrics. While we see some impact frameworks for CBR and service-learning research, they largely bypass the role of metrics, as well as that of impact audiences. A robust set of metrics of measures allows researchers to more fully craft their impact story – which audiences benefited from their research, and in what context. For these researchers, their story will also include qualitative measures that are appropriate to their community partners – surveys and other assessment measures, as well as documentation of ways in which research results are appropriately shared with these partners. As discussed, this may include publication in fully open access venues with journals whose stated scope and audience are aligned as well as other ‘translated’ outputs that are tailored to individual community partners or other audiences such as practitioners, a broader community, or the general public.

We began our investigation looking for open access publishing as a way for the academy to meet its obligations of inclusiveness to their community partners. Reciprocity, however, also includes the need for researchers to meet their scholarly goals. While these publications are largely open to the community, they could improve their impact on the scholar’s career by enhancing available metrics, allowing the scholar to better make the case of the value of CBR scholarship.

It is tricky to draw definite conclusions from studying the target author and audience. While some journals do see community members as playing a more active role in the publication process, as discussed in the results, it is likely that other journals see community members primarily as readers rather than as contributors. In that context, the content of the journals may contain messaging more closely aligned with this audience than the journal’s website, which we hypothesize is catered more toward potential authors. Furthermore, it is likely that there are private formal or informal policies in place in journals related to how and to what degree community plays a role in the journal, making our findings incomplete. However, clearly communicating those intentions on the website would help increase transparency and give those community members greater understanding of the role they play.

Limitations

Defining the set of journals proved challenging – some of the journals on this list are more squarely focused on community-based research or service-learning, while others are larger journals who regularly publish research that cover these two topics, often within a disciplinary mindset, as Table 1 shows. However, focusing more narrowly on the most highly relevant journals, or expanding our set to include other journals whose scopes are inclusive of community-based research or service-learning perspectives, would likely have altered many of our findings: as we noticed with many of the non-diamond journals falling into the latter, larger category of journals. More work to define this set of journals is still needed, given the disparity we encountered in the lists we used to construct our set.

We were also limited in the information we were able to collect. For example, some journals offer authors the ability to log in to their journal’s system, at which point additional article-level metrics may have been made available. Policies or other types of information are likewise not always obvious or made publicly available on the journal’s website, or may not have been available at the time of our study as journal websites are updated. Our research took place over the course of a few months, so we were able to observe some “real-time” updates, such as a journal ceasing publication while still remaining on a recommended list, however, we did not have definitive historical access to shifting policies, changes in scope, etc. This limits our ability to measure the scope or rate of changes we observed in a more meaningful way than chance observation.

Recommendations and Future Research

Recommendations for journals, editorial boards, and journal editors.

Altmetrics can assist researchers in demonstrating the attention, engagement, and impact of their research. However, 50% of the titles examined do not seemingly offer any article-level metrics, which limits this impact demonstration. Journals should consider adopting practices that are beneficial for their authors, including a diamond OA model, and adoption and incorporation of a variety of metrics to assist its authors in demonstrating their impact.

It is unlikely, however, that Wiley, Sage, Taylor & Francis, and Project MUSE will adopt a diamond OA model in the near future. Project MUSE will debut a “Subscribe to Open” model of OA support for some of its titles beginning in 2025, but for the three for-profit publishers, it is likely that all three will continue relying on the hybrid publication model as their dominant revenue model unless external forces necessitate a shift to an alternate source of funding and support ( Project MUSE , n.d. ). Therefore, any possibility for many remaining non-diamond titles to adopt equitable OA models is uncertain as long as these publishers continue to own and operate these publications.

Journals could more carefully consider adopting practices that account for the role of the community in the journal process, particularly if they see a role for community members in the publication process. We likewise recommend that the role of community members be clearly articulated on the journal’s website, and ideally, also mentioned in their mission and scope.

Recommendations for Authors

Authors should consider the availability and impact of their research when deciding where to publish and prepare a dissemination strategy for both scholarly and community audiences that is timely and accessible. They should also ask about ways hybrid journals in this field can work toward diamond open access to reach and impact their stated or presumed broader, non-scholarly audiences; in the hopes that community pressure can bring about positive change for these journals and further align disciplinary values with publication outlets.

Recommendations for the Fields of Community-Based Research and Service-Learning

Models for measuring impact in these fields could be revised to explicitly endorse and prioritize open access publications as a high impact practice. For example, the Furco model rubric’s highest level of institutional achievement, “Sustained Institutionalization”, would be enhanced by inclusion of open access publications as a pathway toward reward for service-learning scholars beyond the more generic goal of “recognition”, which further disincentives these faculty to prioritize open access rather than “high impact” when choosing a publication outlet ( 1999 ).

Updated impact models could include distinct impact audiences, relevant measures, ways to demonstrate appropriate outreach to audiences, and evidence of how research is impacting these audiences, including publishing in a journal that actively considers the role of one or more of these groups in their publishing and/or readership. These impact audiences include the broader community: including specific subgroups such as practitioners, and community members, as well as the general public. This kind of approach to defining and outlining measures is already happening elsewhere in academia; two notable examples are the Becker Model, which defines five distinct areas of impact for biomedical research, and the ACRL Framework for Impactful Scholarship and Metrics, which outlines ways for academic librarians to document scholarly and practitioner impact of their scholarship ( Bernard Becker Medical Library, 2018 ; Borchardt et al., 2020 ). In addition to establishing impact frameworks, researchers may also consider using the newly-created Researcher Impact Framework, which is designed to support researchers in defining and evaluating impact audiences ( De Moura Rocha Lima & Bowman, 2022 ). A dissemination strategy and gathering of relevant metrics can then be incorporated into the full description of scholarly and non-scholarly impact of the research.

Recommendations for Evaluators of Community-Based and Service-Learning Research

Further support for this approach to impact documentation can and should be added to PRT guidance for institutions that prioritize community-based research or service-learning. This strategy can likewise be adopted by grant funders to assist in the evaluation of grant proposals and resulting impact of funded research. Professional organizations and societies with close ties to community-based research and service-learning should consider describing and endorsing a full range of measures and metrics to demonstrate impact of this research.

Further Research

We see several avenues for further research, such as working with journals in our list that have ceased open access publication in order to examine and even help resolve sustainability issues. Alternately, working with editors of hybrid journal publications to better understand the factors that may help encourage a move to a fully open access model, in partnership with individuals associated with journals who have already made such a move. Surveying community-based research scholars would help to better clarify the role and value of open access and different metrics for these scholars when making strategic publication decisions, and how these decisions may differ based on type of appointment, such as tenure-track vs. non-tenure-track. On the other hand, surveying community members would help to understand how they interact with journal content, and where they see gaps in communication, partnership, or availability of research, and if there are differences in opinion between different types of community members. We hope that this publication will encourage creation of a more holistic impact model for community-based research and service-learning that acknowledges open access publications as a form of community impact and establishes community impact as a value and goal for research and researchers operating under a scholarly impact-dominant model of evaluation. Finally, we see an avenue for future research that elucidates the specific information needs of different population groups such as practitioners that are commonly seen as community partners, in order to better understand when and how information can be provided to these partners that fully satisfy their respective needs.

Community-based research and service-learning aim to bring research out of the ivory tower and positively impact community partners. Making research publications openly available for use by community partners, or specific subgroups of partners such as practitioners, has not been commonly identified as a best practice or assessment standard for evaluating the success of these research partnerships, and may constitute a lack of understanding between the academic and community researchers. This study determined that, while the majority of journals that publish research in these fields are fully open access, there is room for improvement to fully integrate and incentivize open access publications for academic researchers. These researchers would also benefit from being able to access robust altmetrics in order to demonstrate non-scholarly engagement with their research, and this effort could also be meaningfully supported through revised evaluation guidelines. Researchers in this field could consider discussing open access support for publications that are not already fully open access in order to try to fully align these journals’ values with their stated non-scholarly audiences.

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Olivia Ivey , MSSW, MLS, is an associate librarian supporting research, teaching, and learning in American University’s School of Public Affairs. She has previously worked in the law library and the U.S. Department of Labor. Prior to her library career, she worked as a program director at a senior center in New York City. Her research interests center on the practical application of information literacy, including research skills and implementation in community settings.

Rachel Borchardt , MLIS, is the Scholarly Communications Librarian at American University in Washington, DC. Rachel previously worked as the Science Librarian at American, as well as the Biology and Neuroscience and Behavior Biology Librarian at Emory University. In her current job, Rachel supports open access, open education resources, and research impact initiatives through the library. Her scholarly interests concern equitable models for research production and evaluation, including diverse models for measuring and rewarding non-scholarly impact and translated research outputs.

Journals Included for Review

Action Research Journal

Anthropology & Education Quarterly

Collaborations: A Journal of Community-Based Research and Practice

Community Health Equity Research & Policy

Engage! Co-Created Knowledge

Engaged Scholar Journal: Community Engaged Research, Teaching and Learning

Ethnography & Education

Gateways: International Journal of Community Engagement and Research

Interdisciplinary Journal of Partnership Studies

International Journal of Service Learning in Engineering

International Journal of Research on Service-Learning and Community Engagement (IJRSLCE)

International Journal of Science Education, Part B: Communication & Public Engagement

International Journal of Service-Learning in Engineering and Social Entrepreneurship

Journal of Community Engagement & Scholarship

Journal of Community Engagement and Higher Education

Journal of Community Informatics

Journal of Community Practice

Journal of Deliberative Democracy

Journal of Experiential Education

Journal of Extension

Journal of Health Sciences and Extension

Journal of Higher Education Outreach and Engagement

Journal of Participatory Research Methods

Journal of STEM Outreach

Michigan Journal of Community Service Learning

Progress in Community Health Partnerships: Research, Education, and Action

Public: A Journal of Imagining America

Purdue Journal of Service-Learning and International Engagement

Qualitative Inquiry

Reflections: A Journal of Community-Engaged Writing and Rhetoric

Research for All

Science Education & Civic Engagement

The Journal of Service-Learning in Higher Education

Undergraduate Journal of Service-Learning and Community-Based Research

Harvard-Style Citation

Ivey, O & Borchardt, R. (2024) 'Open access for community partners, impactful outputs for scholars: Leveraging scholarly communication movements to enhance reciprocity in community based research', Michigan Journal of Community Service Learning . 30(1) doi: 10.3998/mjcsl.3682

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Vancouver-Style Citation

Ivey, O & Borchardt, R. Open access for community partners, impactful outputs for scholars: Leveraging scholarly communication movements to enhance reciprocity in community based research. Michigan Journal of Community Service Learning. 2024 4; 30(1) doi: 10.3998/mjcsl.3682

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APA-Style Citation

Ivey, O & Borchardt, R. (2024, 4 26). Open access for community partners, impactful outputs for scholars: Leveraging scholarly communication movements to enhance reciprocity in community based research. Michigan Journal of Community Service Learning 30(1) doi: 10.3998/mjcsl.3682

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This article has no summary

This paper is in the following e-collection/theme issue:

Published on 26.4.2024 in Vol 26 (2024)

Understanding Symptom Self-Monitoring Needs Among Postpartum Black Patients: Qualitative Interview Study

Authors of this article:

Original Paper

• Natalie Benda 1 , PhD   ; 
• Sydney Woode 2 , BSc   ; 
• Stephanie Niño de Rivera 1 , BS   ; 
• Robin B Kalish 3 , MD   ; 
• Laura E Riley 3 , MD   ; 
• Alison Hermann 4 , MD   ; 
• Ruth Masterson Creber 1 , MSc, PhD, RN   ; 
• Eric Costa Pimentel 5 , MS   ; 
• Jessica S Ancker 6 , MPH, PhD  

1 School of Nursing, Columbia University, New York, NY, United States

2 Department of Radiology, Early Lung and Cardiac Action Program, The Mount Sinai Health System, New York, NY, United States

3 Department of Obstetrics and Gynecology, Weill Cornell Medicine, New York, NY, United States

4 Department of Psychiatry, Weill Cornell Medicine, New York, NY, United States

5 Department of Population Health Sciences, Weill Cornell Medicine, New York, NY, United States

6 Department of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, TN, United States

Corresponding Author:

Natalie Benda, PhD

School of Nursing

Columbia University

560 West 168th Street

New York, NY, 10032

United States

Phone: 1 212 305 9547

Email: [email protected]

Background: Pregnancy-related death is on the rise in the United States, and there are significant disparities in outcomes for Black patients. Most solutions that address pregnancy-related death are hospital based, which rely on patients recognizing symptoms and seeking care from a health system, an area where many Black patients have reported experiencing bias. There is a need for patient-centered solutions that support and encourage postpartum people to seek care for severe symptoms.

Objective: We aimed to determine the design needs for a mobile health (mHealth) patient-reported outcomes and decision-support system to assist Black patients in assessing when to seek medical care for severe postpartum symptoms. These findings may also support different perinatal populations and minoritized groups in other clinical settings.

Methods: We conducted semistructured interviews with 36 participants—15 (42%) obstetric health professionals, 10 (28%) mental health professionals, and 11 (31%) postpartum Black patients. The interview questions included the following: current practices for symptom monitoring, barriers to and facilitators of effective monitoring, and design requirements for an mHealth system that supports monitoring for severe symptoms. Interviews were audio recorded and transcribed. We analyzed transcripts using directed content analysis and the constant comparative process. We adopted a thematic analysis approach, eliciting themes deductively using conceptual frameworks from health behavior and human information processing, while also allowing new themes to inductively arise from the data. Our team involved multiple coders to promote reliability through a consensus process.

Results: Our findings revealed considerations related to relevant symptom inputs for postpartum support, the drivers that may affect symptom processing, and the design needs for symptom self-monitoring and patient decision-support interventions. First, participants viewed both somatic and psychological symptom inputs as important to capture. Second, self-perception; previous experience; sociocultural, financial, environmental, and health systems–level factors were all perceived to impact how patients processed, made decisions about, and acted upon their symptoms. Third, participants provided recommendations for system design that involved allowing for user control and freedom. They also stressed the importance of careful wording of decision-support messages, such that messages that recommend them to seek care convey urgency but do not provoke anxiety. Alternatively, messages that recommend they may not need care should make the patient feel heard and reassured.

Conclusions: Future solutions for postpartum symptom monitoring should include both somatic and psychological symptoms, which may require combining existing measures to elicit symptoms in a nuanced manner. Solutions should allow for varied, safe interactions to suit individual needs. While mHealth or other apps may not be able to address all the social or financial needs of a person, they may at least provide information, so that patients can easily access other supportive resources.

Introduction

This study focused on designing a culturally congruent mobile health (mHealth) app to support postpartum symptom monitoring, as the current practice does not adequately support patients in identifying the warning signs of pregnancy-related death (PRD). First, we describe the public health case for symptom monitoring and decision support for PRD, specifically among US-based, Black patients, a group that faces severe disparities [ 1 , 2 ]. Next, we discuss why the current mechanisms for symptom monitoring and decision support are insufficient. We then outline the existing solutions while also emphasizing the need for new interventions, particularly why those using a combination of mHealth and patient-reported outcomes (PROs) may be appropriate. Finally, we introduce a conceptual model used to accomplish our study objectives.

PRD and Associated Health Disparities

The pregnancy-related mortality ratio has increased by >200% in the United States in the past 2 decades, and in a recent review of PRDs, experts estimated that 80% of the deaths were preventable [ 3 ]. The Centers for Disease Control and Prevention (CDC) defines PRD as “the death of a woman while pregnant or within 1 year of the end of pregnancy from any cause related to or aggravated by the pregnancy” [ 4 , 5 ]. Mental health conditions (22.7%), hemorrhage (13.7%), cardiac and coronary conditions (12.8%), infection (9.2%), thrombotic embolism (8.7%), and cardiomyopathy (8.5%) have been cited as the most common causes for PRD [ 3 ]. Although the global maternal mortality rate has declined, the global rates are still high with 287,000 people dying following childbirth in 2020. There are significant disparities in maternal mortality based on a country’s income, with almost 95% of the cases occurring in low- and middle-income countries [ 6 ]. Stark disparities in pregnancy-related outcomes in the United States, such as PRD, exist based on race. Specifically, Black or African American (henceforth, referred to as “Black”) perinatal patients experience PRD 3 times more than White perinatal patients [ 1 , 2 , 7 - 10 ].

The disparities in maternal health outcomes experienced by Black patients in the United States are based on inequitable access to care, biased treatment, and inadequate communication, driven by systemic racism and all the cascading effects it creates. Black perinatal patients are significantly more likely to be uninsured and significantly less likely to have a usual source of medical care (eg, a primary care clinician) than White patients [ 7 , 10 ]. When Black patients seek care, they face implicit biases that negatively affect care quality and health outcomes [ 1 , 7 , 10 - 12 ]. Unsurprisingly, these biases have led to reduced trust in the health care system among Black patients [ 13 - 17 ]. Black patients also receive less patient-centered communication and feel that they have poorer access to communication with their medical team [ 10 , 18 , 19 ]. Our study aimed to improve the patient centeredness of information and support for Black patients in the postpartum period through a participatory design, an approach by which representative end users are involved throughout the design process [ 20 - 23 ]. While this study focused on Black postpartum patients in the United States, we believe that our findings may provide insights for improving perinatal support for patients from minority groups globally.

Challenges to Supporting Symptom Recognition and Treatment Seeking Post Partum

Patients encounter several challenges recognizing concerning postpartum symptoms. First, the initial postpartum visit occurs 6 weeks after birth, and 86% of PRD cases occur within the first 6 weeks post partum [ 24 , 25 ]. Second, most strategies for improving postpartum outcomes focus on hospital-based solutions, which rely on people recognizing symptoms and contacting a health professional [ 7 ]. Most counseling regarding the warning signs of PRD occurs during the discharge process following delivery, when people are physically exhausted from childbirth and primarily focused on infant care [ 24 ]. As such, this is a suboptimal time for patient education about postpartum risk factors. Discharge nurses report spending <10 minutes on the warning signs of postpartum issues, and most nurses could not correctly identify the leading causes of PRD, making it unlikely that their patients could recognize the warning signs [ 26 ]. There are many measures for postpartum symptom reporting, but the most common instruments focus narrowly on specific mental health issues, many of which are not specific to postpartum mental health or postpartum health–related quality of life [ 27 ]. While these are helpful measures to use in a clinic or hospital setting, they do not provide real-time decision support regarding the full spectrum of severe symptoms that may be indicative of PRD.

Suitability of Different Solutions for Supporting Symptom Monitoring

mHealth can address the need for tailored, dynamic symptom monitoring and support. The Association of Women’s Health, Obstetric, and Neonatal Nurses and the CDC have developed 1-page summaries to help patients identify the warning signs of PRD, such as the Urgent Maternal Warning Signs (UWS) [ 28 , 29 ]. These tools represent a positive step toward improving symptom management, but these solutions do not provide real-time, tailored support. Telephone-based support staffed by health professionals has been demonstrated to decrease postpartum depression and improve maternal self-efficacy [ 30 - 33 ]. However, 24-hour hotlines can be resource intensive, and people may still experience bias when accessing these services. The goal of this study was to conduct a qualitative needs assessment for the Maternal Outcome Monitoring and Support app, an mHealth system using PROs to provide decision support for postpartum symptom monitoring.

Mobile phones offer a viable, inclusive option for intervention delivery for Black people of childbearing age. In 2020, data from the Pew Research Center indicate that 83% of Black people owned smartphones, which is comparable to smartphone ownership among White people (85%). Smartphone ownership is also higher among people aged <50 years (96%), which encompasses most postpartum patients [ 34 ]. However, Black people are twice as likely as White people to be dependent on smartphones for internet access [ 35 ]. mHealth-based apps for blood pressure and weight tracking during pregnancy have demonstrated success among diverse groups, providing evidence that mHealth may be an acceptable means for symptom reporting in the target population [ 36 - 38 ].

Symptom education and PRO-based interventions have demonstrated success in improving knowledge, self-efficacy, and outcomes. Use of PROs has improved symptom knowledge, health awareness, communication with health care professionals, and prioritization of symptoms in patients with chronic disease and cancer [ 39 - 44 ]. Multiple studies have also demonstrated that educational interventions regarding expected symptoms in the postpartum period can improve self-efficacy, resourcefulness, breastfeeding practices, and mental health [ 12 , 38 , 45 - 47 ]. However, given the issues related to trust and disparities in patient-centered communication, it is critical to understand Black patients’ perspectives about how such a system should be designed and implemented.

Conceptual Model

To study the issue of supporting symptom monitoring, we combined 2 theoretical frameworks ( Figure 1 ): the common sense model of self-regulation (health behavior) by Diefenbach and Leventhal [ 48 ] and the model of human information processing (human factors engineering) by Wickens [ 49 ]. The model by Diefenbach and Leventhal [ 48 ] depicts patients as active problem solvers with a mental model of their conditions. Patients process their symptoms, both cognitively and emotionally, and then evaluate whether action is needed [ 48 ]. The patient’s mental model of their condition, personal experiences, and sociocultural factors impact processing, evaluation, and action. In the information processing model by Wickens [ 49 ], action occurs in 2 steps—selection and execution [ 48 ]. Environmental or organizational factors also affect patients’ selection of actions and whether they can execute an action. For example, a patient may suspect that they should visit the emergency room but may not go because they do not have insurance, transportation, or childcare. Our qualitative inquiry investigated how to better support symptom processing and appropriate response selection, while also uncovering the barriers to action that may need to be mitigated.

The goal of this study was to identify the design and implementation needs of an mHealth-based symptom self-monitoring and decision-support system to support Black patients in determining when to seek care from a health professional for signs of PRD in the postpartum period. This tool will support both somatic and psychological symptoms given their complex, critical, and connected presentation. We used the described conceptual model in qualitative inquiry and pragmatic intervention design to provide contributions regarding the following: (1) relevant symptom inputs for postpartum support, (2) drivers that may affect symptom processing, and (3) how the previous 2 aspects highlight the design needs for symptom self-monitoring and patient decision support. To address our study objective, we conducted semistructured interviews with postpartum Black patients, obstetrics health professionals, and mental health professionals.

The study was conducted in 3 tertiary care hospitals and affiliated clinics within the same health system in New York City. The 3 hospitals, taken together, are involved in the delivery of >14,000 babies annually. All participants were either patients who received obstetric care in the included sites or health professionals affiliated with the sites.

Eligible patients were identified by the institutions’ research informatics team using electronic health record data. First, the patients’ providers consented to their patients being contacted, and patients’ charts were reviewed by the primary obstetrician or designate to ensure that the patient was eligible for the study and that they had a delivery experience that would allow them to participate in the interview without undue stress. Next, the patients were sent an invitation to participate via the email address listed in their record. We also posted fliers in 2 high-risk, outpatient obstetric clinics.

Obstetric and mental health professionals were eligible if they were affiliated with one of the institutions in the obstetrics or mental health department. Brief presentations were given at relevant faculty meetings, and participants were contacted individually via email or through departmental listserves.

Interested participants from all groups used a link to schedule a time to speak with a researcher.

Ethical Considerations

The study was approved by the affiliated medical schools’ institutional review board (protocol number 20-08022582). All participants provided written informed consent. Study data were coded (ie, all identifying information was removed) to protect participant privacy. Each participant was compensated US $50 for their time via a physical or electronic gift card.

Study Design and Sample

The study used semistructured interviews with 3 key stakeholder groups: recent postpartum Black patients, obstetric health professionals, and mental health professionals. Eligible patients were within 12 months post partum of a live birth, self-identified their race as Black or African American, and had at least 1 somatic or psychological high-risk feature associated with their pregnancy. High-risk features included attendance at a high-risk clinic for prenatal or postnatal care, inpatient hospitalization within 12 months post partum, a prescription of an antidepressant or benzodiazepine within 12 months of the pregnancy, or a new diagnosis of depression or anxiety within 12 months of the pregnancy. High-risk clinics treated various conditions, but the most common conditions were gestational hypertension and gestational diabetes.

We adopted an interpretivist qualitative research paradigm to study patient and health professionals’ perspectives of how symptom recognition and care seeking may be better supported [ 50 ]. Our methodological orientation involved directed content analysis, adopting an abductive reasoning approach. First, we used the previously specified conceptual model to construct questions and thematically categorize responses [ 48 ]. Then, we allowed unique subthemes to inductively emerge from the data collected [ 51 ].

Interview Guide Development

Interview guides were iteratively developed by our team of researchers with expertise in obstetrics, perinatal mental health, nursing, consumer informatics, inclusive design, and qualitative methods. The guide for each stakeholder group was reviewed and piloted before enrollment of the first participant. Interview guides were tailored for patients or health professionals but followed a similar structure, based on our conceptual model ( Figure 1 ), such that participants were first asked about barriers to and facilitators of processing symptoms cognitively and emotionally (eg, Do they notice the symptom or realize its severity?), making decisions about symptoms they are experiencing (ie, When to seek help from a health professional?), and taking action on problematic symptoms. Probing questions encouraged participants to elaborate on experiential, educational, sociocultural, organizational, environmental, or health systems–level drivers of patients’ symptom management. Then, participants were asked a series of questions related to their thoughts regarding the design of the mHealth system, including how to best report symptoms, the wording of system decision support, the desired level of involvement of the obstetrics health professionals, the means for facilitating outreach to a health professional, additional information resources, and preferences for sharing information included in the system with a trusted friend or family members. During this process, obstetrics and mental health professionals were also shown a handout that outlined the draft of the symptom management algorithm for the system being developed (CDC’s UWS) and asked if they would make any changes, additions, or deletions [ 29 ]. Full interview guides are included in Multimedia Appendix 1 .

Data Collection

All interviewees provided consent electronically before the interview. A PhD-trained qualitative research expert (NB) completing a postdoctoral study in health informatics and population health conducted all the interviews via Zoom (Zoom Video Communications) or telephone. Participants had the option to request an in-person interview, but none of them chose this option. Interviews lasted 30 to 60 minutes and were audio recorded. We explicitly described the study objectives to each participant before the interview. Following the interview, participants completed a demographics survey electronically. All electronic survey information was collected using REDCap (Research Electronic Data Capture; Vanderbilt University).

Data Preparation and Analysis

Audio recordings were converted into transcripts using an electronic software (NVivo Transcription; QSR International) and manually checked for accuracy by a study team member who did not conduct the initial interviews. We completed all data analyses using NVivo (versions 12 and 13), but we manually analyzed the data and did not use computer-aided techniques (eg, computerized emotion detection or autocoding).

Data were analyzed using thematic analysis and the constant comparative process [ 51 - 53 ]. Specifically, each analyst open coded the transcripts, by coding segments that pertained to the research questions, as opposed to coding all words and phrases. We used thematic analysis to detect the common and divergent needs for postpartum symptom monitoring. We chose this method over other approaches such as grounded theory or sentiment analysis because our needs were pragmatic to solution design, and we were not attempting to establish theory, describe phenomena, or represent collective feeling about a topic.

The first deductive analysis was conducted using an initial theoretical model derived from the common sense model by Diefenbach and Leventhal [ 48 ] and the model of human information processing by Wickens [ 49 ] ( Figure 1 ). To promote reliability, 2 coders in addition to the interviewer were involved in the analysis, and each transcript was first analyzed independently by at least 2 people (NB, SW, or SNdR), followed by meetings to resolve discrepancies based on consensus coding. The analysis team created initial codes based on the conceptual model and added new items to the codebook inductively (ie, post hoc instead of a priori, as they arose in the data). The team used NVivo to maintain a working codebook of themes, definitions, and relevant quotes derived from the data. The codebook was periodically presented to coinvestigators with expertise in obstetrics and perinatal psychiatry to improve external validity [ 51 , 52 ]. The sufficiency of sample size was assessed according to the theoretical saturation of themes encountered, specifically based on the need to add additional subthemes to the codebook [ 54 , 55 ]. After all the transcripts had been coded, at least 2 members of the coding team reviewed the data code by code to ensure that meaning remained consistent throughout the analysis and to derive key emerging themes [ 51 ].

Participant Characteristics

This study included 36 participants—15 (42%) obstetrics health professionals, 10 (28%) mental health professionals, and 11 (31%) recent postpartum Black patients. Table 1 presents the self-reported demographic information. As shown, 19% (7/36) of the health professionals and 11% (4/36) of the patients had missing data (ie, did not complete the questionnaire). Participants could also selectively choose not to answer questions. “Other” affiliations were possible for health professionals because those who had a secondary affiliation with one of the included sites but primary affiliation with another organization were eligible.

a N/A: not applicable.

b Health professionals’ self-reported role of resident psychiatrist, chief resident in psychiatry, psychologist, and patient care director was combined into the other category for analysis purposes.

Structure of Themes

Our initial theoretical model, derived from the common sense model by Diefenbach and Leventhal [ 48 ] and the model of human information processing by Wickens [ 49 ] ( Figure 1 ), described that patients experience some inputs (psychological and somatic symptoms of PRD). Then, there is a series of drivers that affect how patients cognitively and emotionally process (eg, notice and realize symptom severity), make decisions about, and act on symptoms they are experiencing. The nature of these symptoms, how they are processed, how decisions are made, and how they are acted upon then drive a conversation regarding the design needs for symptom monitoring and decision support for PRD. The emerging themes were organized into the following categories: (1) symptoms of PRD; (2) drivers of processing, decision-making, and action; and (3) design needs for a symptom-reporting and decision-support system. Quotes are labeled with study-specific identifiers: OB denotes obstetric health professional, MHP denotes mental health professional, and PT denotes patient.

Inputs: Psychological and Somatic Symptoms of PRD

Concerning and routine symptoms were reported both from a psychological and somatic perspective. Sometimes, the distinction between routine and concerning symptoms was clear. Other times, it was more challenging to differentiate routine versus concerning symptoms particularly because they were related to psychological health. Mental health professionals also noted the challenge that routine symptoms can progress to something more serious over time:

In my mind, like normal becomes abnormal, when there is any kind of functioning [loss] that like withstands two to three weeks. [MHP 04]

We really hear a lot about postpartum depression and stuff...A lot of women think...postpartum depression is you just don’t want to. You don’t have it. You go into depression where you can’t take care of your child and you don’t want to hold your child. You don’t feel connected to your child. And I learned...it can be so many different things. [PT 09]

A clear distinction was not always present between psychological and somatic symptoms:

If someone...has pain in their chest or shortness of breath, the first thing you want to think about is it sort of like clots and other kind of physiologic reasons for that. Those are also very implicated and sort of obviously [associated with] panic attacks and anxiety. So, I think though those symptoms are also relevant of physical symptoms, [they] are also relevant for mental health. [MHP 05]

Drivers of Processing, Decision-Making, and Action Based on the Symptoms Experienced

Several drivers were reported to affect symptom processing (ie, whether they noticed the symptom and its severity), patients’ capacity to decide what should be done (ie, make decisions), and whether they were able to act on concerning symptoms ( Table 2 ).

Table 2 presents exemplary quotes for emerging themes under a single driver, but many quotes were coded under multiple drivers in our analysis process. The following passage, for example, highlights how self-perception, sociocultural concerns, and the health system can overlap to present a complex set of factors that may prevent women from receiving the care they need for the symptoms they are experiencing:

A lot of times I think that does get overlooked because people feel like, well, you’re OK, you’re fine. But what research shows us is that especially for Black women, it really doesn’t matter how much money you make or your income level, like our postpartum and perinatal health outcomes are the same across the board, which is really detrimental. So, yeah, I think they get overlooked because of that. I think they get overlooked or we get overlooked in the health care system. But I also think we get overlooked by our family and friends because we’re the strong ones. So, if anybody can deal with this, it’s you. [MHP 10]

a MHP: mental health professional.

b PT: patient.

c OB: obstetric health professional.

Design Needs for a Symptom-Reporting and Decision-Support System

Obstetric health professionals, mental health professionals, and patients discussed multiple needs for improved PRD symptom reporting and decision support. The key design requirements are embedded and italicized in the following text.

Participants generally agreed that although the proposed system focuses on postpartum symptoms, it would be advantageous to introduce the system during pregnancy, particularly in the third trimester :

You have to reach women before they give birth. They might look, they might not look, they might look at it and be concerned. But then they might forget about it and not have time to call. Those first six weeks are really chaotic. [MHP 06]

I think in the third trimester would be great because often we don’t really have anything to talk about in the office. It’s very quick visits like blood pressure and you’re still pregnant and we’re just waiting. And so, I think and they start to have a lot of questions about like, well, when I get home and how’s this going to go? So, I think that time is a good time. We’re all kind of just waiting for labor to happen or full term to get there, and this kind of gives them something to feel like they can prepare for. [OB 08]

Patients were open to reminders regarding entering symptoms they were experiencing, and participants described a desire for just-in-time symptom reporting and decision support, so that they could get quick feedback as they were experiencing the symptoms:

When people get home so much in their life has changed. And it’s probably a very hectic time. So maybe I think that’s a great idea reaching out again, either a few days or a week later to make sure they’re really able to use it and engage with it to the extent that’s helpful to them. [OB 02]

I think it would be a good idea to have like a system where you can report whenever you want. [PT 03]

I think for me, I would say in the moment. But then also having something at the end of every week to just, you know, to check in with yourself. I think that would be good as well. [PT 09]

In addition to considerations about how symptoms would be recorded, participants stressed the importance of the wording of the decision-support messages that patients receive . For messages that inform the patient that their symptom did not seem to require immediate medical attention, it was important to ensure that the patient still felt heard and that they did not leave the interaction feeling stuck with nothing to do regarding a symptom that was concerning to them:

Reframe the message. You know...we apologize that you were experiencing this. We just want to reassure you that this is normal. [PT 01]

[You] don’t want to make anyone feel like their feelings aren’t valid because that’s a horrible thing, especially in health care, especially if a person is convinced that something is wrong with them and you’re telling them that it’s normal and is perfectly fine. So, in that situation, I would just, depending on what the issue is, I would also share information of what to look out for. [PT 05]

The first thing is that it’s normal, but also something that you want to be able to do for comfort. For me, I don’t have to do too much, especially if I’m having anxiety, like if I get a text back that says here are some things you can do in this very moment to handle it. And then also, here are some links or information that you can also look up. [PT 09]

In the events where a concerning symptom was reported and it was recommended that the patient should reach out to a health professional, importance of conveying a sense of urgency without scaring the patient:

You don’t want to scare people, but it’s kind of hard to get around that when something is serious, and you don’t want to dumb it down. [PT 01]

Participants wanted multiple, easy-to-do methods for connecting with their health professional team, including having the number to call pop up, scheduling a time for someone to call them, and being able to start a live web-based chat:

I like all the options, especially that form or chat you can have like, you know, those online chat where like you really chatting with someone for those who like the type. I’m the type of person I just want to make a phone call, right? So, like for me, [it] will be a call. Maybe say maybe if it’s five, five or ten minutes then that will be great. Like especially, it’s going to make me feel like, OK, there’s someone out there that will care about my health. [PT 06]

However, participants noted that they would prefer not to use a symptom-reporting and decision-support tool, but instead reach out directly via phone if they were experiencing issues.

Participants, particularly mental health professionals, described a need for improved nuance or details regarding the different psychological symptoms patients could experience that are indicative of severe mental health issues:

Thoughts of hurting yourself or someone else is a good one...I would say I would add difficulty bonding. It would add something about not being able to sleep, even if you could sleep, you know, like or your anxiety that doesn’t go away, that changes your behavior. So, it changes the way that you interact with the baby or kind of do childcare. I guess I would want to say something about. psychotic thoughts, like fear that someone else may be hurting you or...recurrent worries or anxieties that don’t go away. [MHP 02]

Patients had differing opinions regarding whether the system should be integrated with other health technologies, particularly the patient portal:

I love the patient portal. I was able to be traveling to reach out to my OB, to reach out to all, you know, the nurses and stuff like that and just experience things that I needed. [PT 09]

I feel like...it’s an integral part of my medical history. So, even if it may seem somewhat insignificant for whatever reason, I would still want to have access. [PT 09]

I didn’t find it [the patient portal] very helpful... [PT 03]

On the basis of the feedback from health professionals that it may be challenging for postpartum patients to process and recognize certain symptoms, especially those related to mental health, we explored whether patient participants would be open to sharing educational information about symptoms to expect (rather than sharing the actual symptom reports) with trusted friends or family members. Similar to other design considerations, results were mixed, but it seemed helpful to have a patient-driven option for sharing symptom-related educational information with chosen friends or family members :

I think that there’s so much going on it would help to have someone with a different perspective equipped with this information. [PT 02]

There’s a lot of shame that comes with this. I’m not sure people would actually want other people to know. I can’t speak for the majority, but I didn’t really want people to know because I don’t want the kind of energy that came with people knowing. [PT 05]

We also discovered the competing needs of balancing the patient’s desire for their health professionals to be involved in symptom reporting with the need to avoid significant increases to health professional workload :

I sort of wonder from the health care provider perspective, how involved is the provider in that in the app? Like, do they get like a PDF of all the information? Is that more work for the provider? How does the provider interpret that data? [MHP 03]

I feel like they [the health professional] should be super involved. Especially because I’m not just going off of my experience because, you know, I don’t want to feel like they’re not really like I’m experiencing. And so, it’s scaring me. So, I just want to know that, you know, you’re hands on with everything. [PT 01]

Finally, the participants desired information beyond PRD symptoms to entice them to use the system . They were supportive of including various types of information, such as breastfeeding support resources, milestones and information regarding their child, other websites and apps with trusted maternal and child health information, further support resources for how they feel mentally, and links to social services (eg, food, housing, or other assistance).

Principal Findings

In this qualitative study, we interviewed obstetric health professionals, mental health professionals, and Black postpartum patients. Our findings helped to identify the design and implementation needs of an mHealth-based, symptom self-monitoring and decision-support system designed to support Black patients in determining when to seek care from a health professional for signs of PRD in the postpartum period. We encountered important findings related to (1) inputs, including psychological and somatic symptoms; (2) drivers of processing, decision-making, and action based on the symptoms experienced; and (3) design needs for a symptom-reporting and decision-support system. We have discussed how our findings may be helpful to other postpartum populations as well as the implications of our study for patient decision-support in other clinical settings.

First, our findings related to symptom inputs revealed the challenges caused by the overlapping presentation of somatic and psychological symptoms. This provides support for our approach of including psychological and somatic issues in a single app, particularly given that mental health conditions are a leading cause of PRD. A 2021 review found 15 PRO measures for assessing postpartum recovery. The measures typically focused on mental health or health-related quality of life, but few included both psychological and somatic outcomes, and none were targeted for PRD, such as the system [ 56 ].

Moreover, related to symptom inputs, we found that current tools for pinpointing severe symptoms, such as the CDC’s UWS did not provide sufficient nuance for concerning psychological symptoms. Symptom-reporting tools for PRD will either need to consider incorporating structured assessments, such as the Edinburgh Postnatal Depression Scale (EPDS) [ 56 ], or incorporating additional symptoms. The latter approach may have advantages as the EPDS focuses on depression (while providing subscales for anxiety) and PROs evaluated for use with anxiety disorders have limitations [ 57 ]. Furthermore, the EPDS has been validated in in-person laboratory settings but not in community settings or for web-based entry [ 58 ]. We must also consider how mistrust in the health system may lead to less truthful answers. Issues expressed around stigma related to mental health indicate that the way in which these symptoms are elicited may require further assessment to promote the normalcy of the symptoms and improve candid reporting. Technology-based approaches for supporting perinatal mental health have been described as uniformly positive but having limited evidence for use [ 59 ], suggesting that further exploration is needed in this area, also considering how adding somatic issues may be perceived by patients.

Second, there were several drivers that affected symptom processing, decision-making, and action that cannot typically be solved through a symptom-reporting and decision-support system. Challenges related to self-perception and lack of experience or expectations may be addressed based on the wording for how the symptoms are elicited and by providing concise, easy-to-understand depictions of what should be expected versus what are the causes for concern. However, many of the other issues described related to sociocultural, financial, and environmental factors and the health systems’ systemic racism issues cannot be addressed directly in a simple PRO-based app and decision-support system. Directly addressing these issues will likely require more systematic, multipronged approaches. Therefore, it seems advisable to couple patient decision-support aids with other social support interventions for perinatal health [ 60 , 61 ].

Drivers of processing, decision-making, and action are still important contextual elements to be considered in the design of the system. Another study tailoring an mHealth app for Latina patients to support health during pregnancy also found it important to address issues related to financial barriers, social support, health care accessibility, and cultural differences [ 62 ]. Our best attempt to address these issues may be to promote information transparency and inclusive design. For example, there may be a “frequently asked questions” section of an app, where patients can explore things such as supportive resources for childcare while they seek medical attention or information they may show their friends or family members regarding postpartum symptoms of concern. The system may also use common human-computer interaction principles, such as information filtering [ 63 ] and organizing the suggested resources (eg, for mental health care) based on whether they accept the patient’s insurance. The built environment can also be changed through the system, but it may offer mechanisms for remote monitoring, such as telemedicine-based support or linking the system to a blood pressure cuff, when clinically appropriate [ 64 , 65 ]. As noted, the system obviously cannot address issues related to systematic racism directly [ 66 ]. Instead, we used a participatory design approach, with the hope that the nature of the information presented may be more patient centered, acceptable, and better aligned with the beliefs and values of Black patients [ 67 ]. Issues related to systematic racism have commonly been described in the US health care system, but structural inequities also exist on a global scale. Future studies should investigate how our findings regarding design needs may extend to other minoritized perinatal patient groups.

A systematic review of patient decision aids for socially disadvantaged populations across clinical settings found that such tools can improve knowledge, enhance patient-clinician communication, and reduce decisional conflict [ 68 ]. However, descriptions of patient decision aids focus on the type of tool (eg, paper vs digital), how it was delivered, when it was delivered, and by whom, as opposed to describing the content the aid provides. Therefore, it is challenging to determine how other decision-support tools have addressed information regarding environmental, financial, or health system–level factors that may affect care seeking based on the decision aid. Some tools seem to address sociocultural needs by tailoring to the target population, but the aforementioned systematic review did not find differential effects on outcomes when tools were tailored versus not tailored [ 16 ]. Future studies on patient decision aids may benefit from including non-symptom related information. Providing appropriate informational support may involve a deeper study of the systemic needs that patients may have, even if these needs may not directly be addressed by the decision aid.

Third, descriptions of the design needs for PRD symptom monitoring revealed that there is likely not a one-size-fits-all solution related to reminders, involvement of health professionals, and how the tool is incorporated with other systems (eg, the patient portal). “User control and freedom” and “flexibility of use” are two of the key items in commonly used heuristics for user interface design [ 69 ]; therefore, it is important to include options for customization and varied but safe pathways for interaction with the proposed system. For example, some participants described that they may not be likely to access the symptom-reporting system through the patient portal. Although there may be safety and convenience-related reasons for having the system as part of the patients’ medical record, if the patient chooses, the system could, on the front end, appear more like a stand-alone app than something that must be accessed through the patient portal. Patients also had varying opinions related to how they may want to reach out to a health professional if a problematic symptom was reported. These preferences may differ from instance to instance; therefore, it is helpful to ensure that patients have a choice regarding how to reach out, but system designers must also create workflows with feedback loop, so that patients who are reporting problematic symptoms are not missed (ie, if patients do not reach out themselves, they never receive attention). Patient-level customizations and options for interaction also respects patients as individuals and may promote patient-centered interactions.

Furthermore, related to design needs, participants indicated that the wording of the decision-support messages was critical. Specifically, for reports that did not include currently urgent symptoms, it was important that the message still conveyed support and validation, clarified that the patient could still reach out for help, and provided additional means for managing their symptoms, so the patient did not feel frustrated by their report [ 70 ]. Regarding messages that recommended patients to reach out to their health professional team, it was crucial to note what the symptom meant (eg, what kind of disease it could indicate), encourage the patient to reach out without increasing anxiety, and provide different avenues for easy outreach. Going forward, we plan to incorporate the aforementioned elements into the messages built into the system. We will then complete additional acceptance and comprehension testing with a larger sample of postpartum patients. These findings also indicate that care must be taken in translating such tools, and the translated materials should be reviewed with the target end user groups before implementation. This may mitigate unintended consequences or inadvertent inclusion of language that does not support the needs of minoritized groups.

Strengths and Limitations

Our study highlighted the limitations and areas that would benefit from further exploration. First, our study involved recruitment sites that were within a single health system in New York City. Second, while we achieved thematic saturation of qualitative themes (a means for determining sample sufficiency in qualitative studies) [ 54 , 55 ], our conclusions are based on a sample of 36 participants from 3 stakeholder groups. Third, given the documented disparities, we deliberately focused on the needs of Black postpartum patients, but this may not represent the needs of the postpartum patients of other races. Furthermore, our sample should not be viewed as encompassing the opinions of all Black postpartum patients. Our findings revealed the need for individual customization and varied interaction patterns on a case-by-case basis. Fourth, all interviews were conducted remotely (via Zoom or telephone), which can have effects on the interaction. On the one hand, it may be harder to connect with the interviewee, and on the other hand, people may feel more anonymous and comfortable with sharing information. Finally, although we attempted to promote external validity through the review of the coding scheme by a subject matter expert, we did not have the opportunity to perform triangulation of the findings by returning the results to participants. To address these limitations, it would be beneficial to survey a larger group of postpartum patients, powered to assess the differences based on race and ethnicity. This would allow us to come to a stronger consensus regarding design choices, assess whether there are differences in design needs or preferences, and gain feedback from patients in areas outside New York City. Future studies may also explore how other underserved groups, such as those with limited English proficiency, may benefit from tailored symptom self-monitoring and decision support.

Conclusions

In this qualitative study regarding postpartum symptom monitoring and decision support, we found that the current structured reporting measures do not include the combination of somatic and psychological symptoms that may be indicative of severe outcomes in the postpartum period. While not explicitly related to symptom reporting and decision support, patient decision aids, particularly those focusing on minoritized groups, should consider how the aids may be coupled with other structural support interventions or, at least, information about how other resources may be accessed. As stated in the commonly accepted design heuristics, we also found that user control and freedom unsurprisingly remain important for a patient decision-support aid for Black postpartum patients. Finally, decision aid–related phrases must take care to convey urgency without inducing anxiety when action may be indicated and consider respect and empathy for the patients’ symptoms when action may not be indicated to ensure that they do not feel unheard and are empowered to report new or worsening symptoms.

Acknowledgments

This study was supported by the National Institute on Minority Health and Health Disparities (K99MD015781; principal investigator: NB).

Data Availability

The data sets generated and analyzed during this study are not publicly available due to institutional review board regulations but are available from the corresponding author on reasonable request.

Authors' Contributions

NB conceptualized the study and acquired funding under the advisement of RBK, LER, AH, RMC, and JSA. NB collected the data. NB, SW, and SNdR analyzed the data with input from all other authors. ECP completed the literature review and descriptive analysis of participants’ characteristics. NB drafted the paper and received substantial inputs from all other authors.

Conflicts of Interest

LER is an Up to Date contributor and an advisory board member for the New English Journal of Medicine, and Contemporary OB/GYN. She has also been a speaker for Medscape is an an expert reviewer for Pfizer on the RSV Vaccine. AH is an Up to Date contributor, a co-founder and medical consultant for Iris Ob Health, and a consultant for Progyny.

Semistructured interview guide questions for patients and health professionals.

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Abbreviations

Edited by A Mavragani; submitted 22.03.23; peer-reviewed by C Laranjeira; comments to author 15.01.24; revised version received 20.02.24; accepted 08.03.24; published 26.04.24.

©Natalie Benda, Sydney Woode, Stephanie Niño de Rivera, Robin B Kalish, Laura E Riley, Alison Hermann, Ruth Masterson Creber, Eric Costa Pimentel, Jessica S Ancker. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 26.04.2024.

This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on https://www.jmir.org/, as well as this copyright and license information must be included.

Stories to Save Lives Projects by ENGL071H Students

Patient Autonomy and Home Remedies

By Cailin Antonio

Introduction

A number of medical treatments have been developed and include traditional and alternative treatments. These alternative treatments, most often known as natural remedies, are often less invasive and much more natural compared to their contemporary counterparts. They have evolved as a result of patients’ fears of putting foreign chemicals and invasive objects in their bodies, especially when outcomes are unknown. To retain control over their own bodies, patients often turn to alternative treatments; by using non-traditional remedies, they place control and power in their own knowledge of health. To a large extent, the use of home remedies can be attributed to a patient’s great desire to make his own decision, to exercise patient autonomy.  This desire is largely influenced by society’s  distrust of the healthcare system, given its highly invasive conventional medical treatments, and the astounding inadequacy of many biomedical treatments. 

Distrust of Healthcare System

Due to systemic racism and lack of personal relationships with medical personnel, individuals have grown increasingly more distrustful of the healthcare system, leading to an explosion in available home remedies. Distrust in the healthcare system is extremely harmful to the foundation of care and society in general. In a study conducted regarding health outcomes and patients’ perceptions of the healthcare system, a “significant association between trust in health care professionals and health outcomes” was observed (Birkhäuer et. al) . Without trust, patient-centered care is not effective. Those with mistrust of healthcare organizations are less likely to take advice from doctors, take prescriptions, or follow up with appointments (Hostetter and Klein). As a result, when individuals face illnesses and refuse to take advice from medical practitioners, they are more likely to employ alternative medicines and home remedies. The frequency of distrust of the medical establishment varies across different races and results from systemic issues in the healthcare system. Black Americans are much less likely to trust the system because of health disparities between white and black patients. The level of distrust among Black medical professions is also elevated. Black Americans are consistently undertreated for pain. Black patients often feel as if their voices are not heard by doctors due to racial inequities in the healthcare system (Hostetter and Klein). They often feel it’s a waste of time to seek medical attention if the doctor is not going to listen. This is extremely harmful for Black patients and likely worsens disparities and health outcomes. For example, Black Americans died at a higher rate from COVID-19 but were also found to be less likely to have taken the COVID-19 vaccine. Over 50% of those individuals hospitalized with COVID-19 were  black or hispanic and out of a study of 1,447 patient deaths, over 53.1% of deaths were persons of black and hispanic descent (Ramírez). This is the case for many diseases. Distrust of the healthcare system, although warranted at times, can have a harmful effect on patients as they may turn to natural remedies or no treatments at all. 

Invasiveness of Treatments

Furthermore, highly invasive treatments have led patients to seek more natural treatments. Conventional treatments can often have side effects that patients may be unwilling to experience. Treatments involving chemicals, drugs, or radiation understandably elicits fear in patients. For example, in a study regarding reasons why patients avoided seeing a doctor, responses included “fear of needles”, “fear of pain”, and “fear of specific procedures” as reasons (Taber). These fears were also documented in a survey by the American Psychological Association that questioned Indonesian women with breast cancer. Many of these women delayed their cancer treatments and attributed this to the fact that they “perceived surgery as a painful treatment causing the loss of an essential organ” and were scared of treatment (Iskandarsyah et. al). As a result, they took a more natural approach and turned to spiritual healers. Moreover, in the oral history of Janet Sasser Ross , she details how her grandmother and aunt used home remedies to attempt to cure their cancers (Efird). Her grandmother used hydrogen peroxide and apple cider vinegar in a poultice to rid herself of skin cancer while her Aunt Judy attempted to use similar methods to cure her uterine cancer. They were ultimately unsuccessful (Efird). Although both of her family members went to the doctor, they refused to take the recommended treatment because they feared that chemotherapy would have an overall harmful effect on their bodies (Efird). As seen in this oral history, more individuals are turning to alternative treatments due to fear of conventional treatments. 

Inadequacy of Treatments

In addition, the lack of satisfaction with conventional treatments due to ineffective outcomes leads patients to turn to alternative treatments. Surprisingly, there is a lack of evidence supporting the efficacy of many medical procedures. For example, in 2002, it was found that a widely used knee surgery for osteoarthritis was a “sham” (Kiley). In addition, there is evidence of some highly invasive treatments turning out to be less effective than safer alternatives (Kiley). This also occurs in conjunction with the fact that less than half of all American medical treatments actually have good evidence supporting positive outcomes.  The FDA is at fault as studies only need to demonstrate evidence that a drug is superior to placebo and not superior to current treatments that have already demonstrated superiority to placebo. This is upsetting to individuals as they are forced to undergo new treatments that may not be superior to less risky pre-existing therapies. The benefits of these therapies does not always outweigh the risks, leading individuals to turn to more natural, ‘less risky’ treatment. For example, in the oral history of Nancy Holt , listeners learn about her husband Bruce who was a shaman who would often cure “incurable diseases”(Allen). He did so in many unconventional ways, such as giving a patient a dime for each wart she had (Allen). This is an unconventional treatment, yet a successful one. Because of Bruce’s success as a shaman, many community members seek help from him, instead of medical practitioners. This happens in many communities across the world; as individuals view medical treatments as less effective or equal in effectiveness to less risky alternative therapy.

The use of alternative and herbal medical treatments can be attributed to a lack of distrust of the healthcare system by individuals, a fear of traditional treatments that may be highly invasive, and the lack of evidence that supports cutting edge medical treatment. It is clear that the rise of non-traditional treatments has been driven by a distrust in the medical establishment that is worsened by health inequity and a complex disjointed healthcare system. If we are to make progress, it must begin with a system that reduces health inequity and gains the trust of patients by truly placing them at the center of the healthcare system.

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Efird, Carolin. Interview with Janet Sasser Ross. 15 June 2018 (Y-0045). Southern Oral History Program Collection (#4007), Southern Historical Collection, Wilson Library, University of North Carolina at Chapel Hill. 

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