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The Role of Gatekeepers in Research: Learning from Reflexivity and Reflection

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T1 - The Role of Gatekeepers in Research

T2 - Learning from Reflexivity and Reflection

AU - McFadyen, Jackie

AU - Rankin, Jeanie

PY - 2016/10/21

Y1 - 2016/10/21

N2 - Research is now an integral part of everyday health, education and social science practice. These professions need to be responsive to meet the changing needs in light of evidence based research findings. Within this process, gatekeepers have a key role to ensure researchers gain access to potential participants and sites for research. Positive influences of the gatekeepers can be invaluable to the research process by facilitating the smooth running of research activity to completion. At times, gatekeeping can be problematic with researchers having limited or no access to sites. In this present study to recruit vulnerable adolescents, a number of gatekeepers denied, limited or delayed access to potential participants and sites despite ethical, professional and organizational approval. In response, the researchers incorporated learning tools to address challenges brought about by gatekeepers in this study and for improvements in future studies. Reflexivity was used during the study to critically review all aspects of the research process and retrospective reflection identified areas that worked well and those areas for improvement in future studies. In broad terms, a number of factors were found to influence the action of gatekeepers. This related to level of understanding about the research, communication issues, motivation issues and fear or anxiety about the outcome. One recurring issue seemed to relate to the sensitive nature of the study and the deeply held attitudes and values of the individual gatekeepers. Researchers need to engage and involve the gatekeeper/s early in the research process. Other positive influences include sharing of clear information with the purpose of the research, the gatekeeper being motivated with a positive attitude to research which is also supported within the gatekeeper’s environment. When these positive influences are not present then this can have a negative influence on research activity.

AB - Research is now an integral part of everyday health, education and social science practice. These professions need to be responsive to meet the changing needs in light of evidence based research findings. Within this process, gatekeepers have a key role to ensure researchers gain access to potential participants and sites for research. Positive influences of the gatekeepers can be invaluable to the research process by facilitating the smooth running of research activity to completion. At times, gatekeeping can be problematic with researchers having limited or no access to sites. In this present study to recruit vulnerable adolescents, a number of gatekeepers denied, limited or delayed access to potential participants and sites despite ethical, professional and organizational approval. In response, the researchers incorporated learning tools to address challenges brought about by gatekeepers in this study and for improvements in future studies. Reflexivity was used during the study to critically review all aspects of the research process and retrospective reflection identified areas that worked well and those areas for improvement in future studies. In broad terms, a number of factors were found to influence the action of gatekeepers. This related to level of understanding about the research, communication issues, motivation issues and fear or anxiety about the outcome. One recurring issue seemed to relate to the sensitive nature of the study and the deeply held attitudes and values of the individual gatekeepers. Researchers need to engage and involve the gatekeeper/s early in the research process. Other positive influences include sharing of clear information with the purpose of the research, the gatekeeper being motivated with a positive attitude to research which is also supported within the gatekeeper’s environment. When these positive influences are not present then this can have a negative influence on research activity.

M3 - Article

SN - 2345-718X

JO - GSTF Journal of Nursing and Health Care

JF - GSTF Journal of Nursing and Health Care

Relationships Between Gatekeepers and Researchers: The Experience of Conducting Evaluations into Parenting Programmes in Community and Penal Settings

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Julie T. Davies &
Eleanor Peters

The idea of reflexivity in research and how biographies intersect with the field is one which has been discussed by various authors in a number of settings (Finlay 2002; O’Reilly 2012). Although we address some of these issues as critical criminologists 1 (Carrington and Hogg 2008), the chapter will focus on ‘social critique’ (Finlay 2002) in terms of the power imbalance between researcher and respondents, and the dynamics involved between the researcher and the professionals, such as social workers and criminal jus- tice professionals, who act as gatekeepers. In a critical research approach, issues of power and powerlessness are paramount if we are to be reflex- ive in our research — critically analysing power, personalities, politics and marginalisation.

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Davies, J.T., Peters, E. (2014). Relationships Between Gatekeepers and Researchers: The Experience of Conducting Evaluations into Parenting Programmes in Community and Penal Settings. In: Lumsden, K., Winter, A. (eds) Reflexivity in Criminological Research. Palgrave Macmillan, London. https://doi.org/10.1057/9781137379405_3

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Please note you do not have access to teaching notes, “you have to say everything is nice here”: complexities of gatekeeping in qualitative research in northern mozambique.

Qualitative Research Journal

ISSN : 1443-9883

Article publication date: 21 May 2019

Issue publication date: 4 June 2019

The purpose of this paper is to reflect on the author’s research experiences in northern Mozambique in order explore the multiplicity of gatekeeper relations that arose while seeking to arrange access to both “the field” and respondents, as well as the impacts that these relationships had on the research process. Although this dynamic has been thoroughly described within methodological literature, there exists a tendency to presume research–gatekeeper relations as static; once established, there is little discussion on how the relationships develop or can be managed, once access has (or has not) been achieved.

Design/methodology/approach

The paper draws upon qualitative fieldwork conducted predominantly in rural communities in northern Mozambique. The study analysed the development of the Nacala Development Corridor programme and the N13 Highway Rehabilitation Project in northern Mozambique in order to examine the impacts of the development on local citizens and examine the relationship between citizen and state within development processes. Fieldwork consisted of three different phases of semi-structured and open-ended interviews with key stakeholders and affected persons, spanning five different interview schedules, and a total of 77 individual interviews and 27 community focus groups conducted along the N13.

The study found that duality of Mozambican governance which includes both local officials and traditional leadership contributed to a multiplicity of local gatekeepers which impacted the research process in a multitude of ways. As a result, researcher–gatekeeper relations were not static, but had to be managed throughout the duration of the study.

Originality/value

This discussion provides a more dynamic representation of the challenges involved with establishing and managing gatekeeper relations in rural, developing, and in particular, southern African, contexts, while offering cautious practical advice to researchers working within rural or southern African contexts.

Qualitative research
Gatekeepers
Traditional leadership

Kalina, M. and Scott, D. (2019), "“You have to say everything is nice here”: Complexities of gatekeeping in qualitative research in northern Mozambique", Qualitative Research Journal , Vol. 19 No. 3, pp. 307-323. https://doi.org/10.1108/QRJ-12-2018-0011

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Research Design Review

A discussion of qualitative & quantitative research design, ethnography: the vital roles of gatekeepers & informants.

The following is a modified excerpt from Applied Qualitative Research Design: A Total Quality Framework Approach (Roller & Lavrakas, 2015, pp. 202-204), a qualitative methods text covering in-depth interviews, focus group discussions, ethnography, qualitative content analysis, case study, and narrative research.

Ethnographic research may require the researcher to explicitly gain access to and cooperation from participants. To do this, the researcher principally relies on two functionaries: gatekeepers and key informants. A summary of the roles each plays in gaining access and cooperation can be found in Roller & Lavrakas (2015, p. 203).

Gatekeepers are typically people who hold some type of authority or control over the access to one or more other individuals. A gatekeeper may be a receptionist or administrative assistant in an office environment, the director at a primary care facility, a community leader, a school principal, a manager at a coffee shop (Waxman, 2006), a college dean (Magolda, 2000), or the owner of a website (Paechter, 2013). Because the gatekeeper has the power to give or deny access to the population of interest, the ethnographer may need to make a concerted effort to develop a strong, positive relationship with any gatekeeper associated with the study participants. In contacting the gatekeeper, the researcher should introduce the purpose of the research as well as how the research will benefit the people or organization that the researcher is hoping to gain access to observe. For example, an ethnographer studying a community’s homeless population might contact the manager of the local shelter for permission to observe its patrons, emphasizing that the final outcome of the research is expected to help improve services for the homeless in the community and larger city.

Ethnographers conducting participant observation also rely heavily on key informants . These are generally people who are associated and involved with the research participants (e.g., a nurse in the maternity ward, a member of the local Al-Anon support group, or a union member at the manufacturing plant), and act as the ethnographer’s advisors and supporters throughout the study. As with gatekeepers, the researcher must work towards establishing a trusting relationship with key informants. However, unlike gatekeepers, who may or may not remain involved in the research once access is given, the ethnographer’s relationship with key informants may extend over a lengthy period of time and ultimately culminate in a researcher–informant collaboration on the analysis and actual write-up of the research. Because of their intimate association with study participants, key informants need to be assured of the researcher’s identity, the legitimacy of the research endeavor, and that the research will not result in any harm or otherwise negatively affect the participants.

Key informants can be particularly useful in covert observation and/or studies with deviant populations or subcultures. Adler (1990) and her husband depended heavily on key informants in their 6-year participant–observer ethnographic study of the drug trafficking trade. Their informants not only advised them on how to approach the group of drug dealers being observed, but also supported them when altercations erupted during observation and widened their set of contacts by letting them know “when someone we might be interested in was planning on dropping by, vouching for our reliability as friends who could be included in business conversations” (p. 102). This example illustrates many critical functions of key informants and the important role they play in gaining and maintaining participant cooperation. Regardless of whether the ethnography is overt or covert, key informants facilitate:

• The introduction to participants and other relevant individuals. • The participants’ trust by assuring them of the ethnographer’s credentials, integrity, and legitimacy of the research effort (in overt observation). • The cooperation among participants with words of encouragement and reasons why they should participate (in overt observation). • The rapport between the ethnographer and participants by helping the participant–observer understand the group experience, and advising them on how to deal with particular situations.

Adler, P. (1990). Ethnographic research on hidden populations: Penetrating the drug world. The Collection and Interpretation of Data from Hidden Populations. National Institute on Drug Abuse Research Monograph , 98 , 96–112.

Magolda, P. M. (2000). Accessing, waiting, plunging in, wondering, and writing: Retrospective sense-making of fieldwork. Field Methods , 12 (3), 209–234. https://doi.org/10.1177/1525822X0001200303

Paechter, C. (2013). Researching sensitive issues online: Implications of a hybrid insider/outsider position in a retrospective ethnographic study. Qualitative Research , 13 (1), 71–86.

Roller, M. R., & Lavrakas, P. J. (2015). Applied qualitative research design: A total quality framework approach . New York: Guilford Press.

Waxman, L. (2006). The coffee shop: Social and physical factors influencing place attachment. Journal of Interior Design , 31 (3), 35–53.

Gatekeepers in qualitative research; not so scary after-all

In our collective conscious gate-keepers have a scary image. They don’t just let people in and out of places, they may control who gets in (and out). Gatekeepers to watch out for and tips for handling

Cathy Gibbons

One of the most efficient ways to recruit or engage people as participants or informants in your research is to gain access to groups of people rather than isolated individuals. And where there is a group of people, you will probably find a gatekeeper.

In our collective conscious gate-keepers have a scary image (think Cerberus the 3-headed beast at the entrance to Hades in Greek mythology, or the stern and fanged Jaya and Vijaya , the gatekeepers of Vishnu's Vikuntha). They don’t just let people in and out of places; they may control who gets in (and out), facilitating and policing access. We tend to think of them in terms of access to physical spaces, but they may be controlling access to people, resources, information, and even the narratives; the story to be told.

Official gate-keepers are easy to spot, even if their official job title is not ‘Gatekeeper’. There are numerous roles in academia that include gatekeeping. Admissions Officers control entrance to a course, Estates officials keep the ‘keys’ along with administrative staff, who may also control access to user-names and passwords, along with IT staff. One might argue that anywhere there is a decision to be made that can either block or progress your research, there is a gatekeeper.

This can all sound a bit intimidating. But it can’t always be an easy task for gatekeepers when there is demand on limited time and resources, and the gatekeeper needs to determine the legitimate right or reason for access. Historically this means that one way to reduce the burden was to deter those without right or reason from even trying. Gatekeepers were scary. Nowadays, whilst they can be intimidating, generally there are social codes, professional codes and governance structures that mean that official gatekeepers act as facilitators for those with legitimate rights to access.

Let’s look at it from the gatekeepers’ point of view for a moment.

1. Gatekeepers expect to be approached for access, and mostly by people with a legitimate reason and/or credentials to prove it. It might be part of their job to sign-post people to ways to get authority to access. Large organisations often have named points of contact, or at least a ‘contact us’ email or phone number. These are the easiest of gatekeepers to approach, although if you use email, the response might not be as rapid as you would like. Before launching into a massive essay about what you want to do, it might be worth checking if you have the right person or department.

2. Gatekeepers also expect that people with no right or legitimate reason will approach them too. If their job is to deter and turn these people away, then being perfunctory and sticking to a script makes their job easier. This can be scary or annoying, especially if you don’t understand why you are being turned away, or you feel your reasons are legitimate. If you are deterred, ask yourself, Is this the only point of access; could I try someone else? Or come back another day, better prepared; sometimes you just get off on the wrong foot, so to speak.

3. Gatekeepers will be approached by people with reasons they find hard to determine if they are legitimate or not. This is where everyone’s life gets harder. In a busy role, it is easier and probably entirely appropriate for them to say no, than listen to you ramble on about what you need. The onus will be on you to present a coherent reason for wanting access; i.e. one that makes sense to the gatekeeper. (Know your audience!)

4. Gatekeepers don’t always have a clear remit and they may have multiple roles. They may be wonderful, helpful people, but it may take one or both of you to realise that you’re talking to the wrong person. Or you are talking to the right person, but because of the variety in their role they’re taking a while to understand what it is you want of them. Again, there is an onus on you to communicate appropriately. If you’re talking to a university administrator, you might get away with the kind of academic language you’d use in a literature review, but then again maybe not.

5. Gatekeepers may get many requests of a similar nature. The organisation or the people they give access to may be suffering from research fatigue. You will need to be clear about the direct benefits of the research to those directly involved. For example, it is unlikely that a parent whose child has already been involved in medical trials (and found them tiring or negative in some way) will want their child to go through something similar again. Even if it will benefit future children, they may perceive that it is their child paying the cost now. Dealing with gatekeepers who ‘guard’ vulnerable groups requires especial sensitivity and awareness of concerns of those at the receiving end of research. This includes groups who are over-researched.

Tips for approaching gatekeepers

· Do not assume that people will want to take part (even if you think it's brilliant).

· Do not assume mal-intent. Try to build some rapport before making requests.

· There is often more than one gateway in an organisation and the first gatekeeper may pass you on to another gatekeeper. So be prepared to have a short simple outline for initial contacts, and more detailed information as you go along.

· Try to remain emotionally detached from the outcome (Difficult I know: anything that blocks the progress of your study has dramatic implications).

· Do not under-estimate the power of a gatekeeper. They will have their own legitimate agenda, which may conflict with yours.

· Will the gatekeeper be needed beyond initial contact? Keep the details of your gatekeepers throughout your project (in accordance with data management policies). Research can sometimes be like a game of snakes and ladders, and you’ll find yourself back where you started. A facilitative gate-keeper can be your ‘ladder’ back to making progress in your research.

· Some gatekeepers are self-appointed, especially in informal groups. They may be performing a valuable service to their community and may be the best way of accessing the community. Just be mindful of the tale that they tell. Are they really representing the group? What is their relationship like with the group and how might affect what you see and hear? Loyalty to a gatekeeper may restrict what members want to tell you.

Why do we still find Gatekeepers so scary?

The way research is designed and approved in some areas of social research pre-supposes that the way to conduct robust and credible research is to plan ‘everything’ in advance and then gain ethical approval on this basis. Emotions tend to run high when research plans are built on single points of success or failure. By the time we approach a gatekeeper we have invested heavily in the outcome of successfully getting past the gatekeeper. No wonder people feel scared!

The methodological basis of truly qualitative research is that it is an iterative process . I wonder if one of the mistakes we make is to read a lot about the context of our research and use the literature review for the basis of our planning, instead of talking generally to insiders or gatekeepers first. Even if your research is mixed methods, or you do not share my qualitative epistemological values, you could consider building your research in phases with if/then and if not/then alternatives. Have smaller scales of activity, and multiple points of access (even if the method is the same, such as semi-structured interviews). Including gatekeepers in your planning earlier rather than later could reduce the risks to your research, and potentially add to the quality of the engagement with your research participants. Remember gatekeepers facilitate entry as well as deny it.

Any research plan should of course be based on the purpose of the research, but failure to consider the participants purposes, needs, motivations and expectations will result in a limited plan that is vulnerable in a number of areas. Involving gatekeepers, or at least paying close attention to their questions or objections at the planning stage could reduce some of these vulnerabilities, help later stages run more smoothly, such as:

· recruitment of appropriate participants

· greater awareness of the needs of the participants to enable engagement

· engagement by participants in the ways that you have envisaged and positive ways you had not

· retaining participant engagement for the full length of a project

· gathering sufficient quality data

· positive experience for participants engaged in your project and positive perceptions of research more generally

Gatekeepers to watch out for

Legitimate gatekeepers are there to protect people (and resource) from real and perceived harm. Gatekeeping implies a passive or static role, whereby the gatekeeper responds to those seeking to gain entry. Sometime gatekeepers will move into a more dynamic and active role and attempt to control the narrative that emerges from the research. They may for example only introduce you to people who agree with them, or limit your access to parts of a project that have not been so successful. They may be so beguiling and have such a coherent narrative that it is difficult for you see alternatives, let alone pose alternatives or dig deeper, for fear of damaging the relationship and lose access. Just remember research requires you to have an enquiring mind, so it’s worth alerting your gatekeeper/facilitator to this from the outset if you are worried about causing offence.

Beyond fieldwork and the gathering of data , academia has gatekeepers who will guard/control the narrative of a discipline (i.e. the story that it tells of itself). They will for example legitimately reward you with good marks if you demonstrate a sound understanding of that narrative; even more so if you can critique that narrative within normative bounds. Institutions will employ marketing and communications staff to produce and control the official institutional narrative. Beyond the individual institution there will be academic journal editors and reviewers, who will ‘gatekeep’ access to publication. The funding to carry out research will have gatekeepers too. Occasionally, people will control a narrative so actively that they move into a ‘policing’ dynamic where non-normative narratives are not rewarded. Or worse, they may even be perceived as illegitimate and so pursued and punished. Fortunately this kind of ‘witch-hunt’ is high profile , but not common. What is more common, according to findings in our Qualitative Researcher Journeys project , is the systemic issue of gatekeepers on review boards and funding bodies that will block your qualitative research because of a failure to understand, or value, the iterative nature of qualitative research. As a systemic issue you cannot tackle this alone, but you can increase your resilience to challenge, and reduce the vulnerability of your research to single points of failure.

. Really think about where and why challenges may emerge to your plans. Put yourself in their position.

. Talk and listen to people informally to inform your research plans . Work with your gatekeepers, not against.

. Whilst not all gatekeepers are human (think automated help-lines and chat bots), those that are human will present the range of emotions and attitudes that all humans do. As Ahern reports of their experience of gatekeepers, “once I figured out that human nature is always a variable in research, everything fell into place” (2014:10)

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The Authenticity of Gatekeepers as Means of Data Collection in Research

Cordelia Beauty Uwamusi
Veronica Udukabasi Chianu
Isiaka Mustapha
Jun 16, 2023
Public Administration

Cordelia Beauty Uwamusi, Veronica Udukabasi Chianu, and Isiaka Mustapha Department of Political Science and Public Administration, Igbinodion University, Okada, Edo State, Nigeria

DOI: https://doi.org/10.47772/IJRISS.2023.70606

Received: 03 May 2023; Revised: 17 May 2023; Accepted: 20 May 2023; Published: 16 June 2023

Gatekeepers are middlemen that manage access to communities or groups that academics are interested in investigating. They can be found in a range of places, including hospitals, schools, community organizations, and places of worship. Researchers must be aware of the potential difficulties associated with using gatekeepers and take precautions to ensure the authenticity and reliability of the data collected, even though gatekeepers can be useful in facilitating access to populations that may be difficult to reach, such as marginalized or vulnerable groups. This paper tends to assess the extent to which gatekeepers influence the authenticity of data collected in research studies. The main objectives are: i.to examine literature review on the role of gatekeepers in research and their impact on data collection. ii. To identity and analyze different types of biases and limitations that may arise when gatekeepers serve as data collectors. The report examines the experiences of researchers who have utilized gatekeepers and identifies recommended practices for guaranteeing the validity and reliability of data obtained through gatekeepers using secondary sources of data collection from current literature reviews. However, in order to ensure that the data gathered is accurate, dependable, and representative of the population being studied, researchers must also be aware of the potential drawbacks of using gatekeepers. The recommendations made in this paper’s conclusion are intended to guide future study on the use of gatekeepers in data collecting. These recommendations include the need for further studies that focus on the experiences of gatekeepers themselves and the likelihood that they would have biases or conflicts of interest.

Keywords : 1. Biases, 2. Drawn back,3. Middlemen, 4.Organization, 5. Potential.

INTRODUCTION

In research, data collection is a critical component that requires careful consideration to ensure that the information gathered is authentic, reliable, and valid. One method of data collection that is commonly used is through gatekeepers. Gatekeepers play a major role in research by acting as intermediaries who control access to information and resources Denscombe, (2014). For a long time the research literature has been interested in the employment of gatekeepers in the data gathering process. Gatekeepers are people or groups that manage access to a certain group or community, such as medical professionals, educational administrators, or local authorities Hammersley, M., Atkinson, P. (2007).

Gatekeepers can be used by researchers to get access to a certain community for research. Using gatekeepers to gather data can have a number of advantages. Gatekeepers, for instance, might guide researchers through challenging ethical dilemmas and cultural conventions that might influence data collecting. They may also guarantee that the study is carried out in a way that respects the subjects’ confidentiality and privacy. Gatekeepers may have built ties and trust with participants because they are frequently fellow community members. This may make it simpler for researchers to establish trust with participants and get access.

Gatekeepers have been used in study on social and environmental concerns in India and this is well represented in Kumar et al. (2021) the researcher advised that in order to assure the authenticity and usefulness of the data gathered, a participatory strategy should be adopted when dealing with gatekeepers. This involves including them in the study process and seeking out their views and advice. Researchers can build rapport and trust with participants by using gatekeepers. Gatekeepers may have built ties and trust with participants because they are frequently fellow community members Davis and Broome (2017).

This may make it simpler for researchers to establish trust with participants and get access. In Elzubeir and Rizk (2020) the researchers looked at the experiences of researchers who accessed healthcare providers in the United Arab Emirates by using gatekeepers. The researchers discovered that although gatekeepers were crucial in providing access to the target group, there were drawbacks to this strategy. It should be noted here, despite the usefulness of gatekeepers to collect data, there may be some drawbacks. For instance, gatekeepers may have biases and interests of their own that might affect the findings of the research Ioannidis, (2005). Researchers should take precautions to guarantee that the research is carried out objectively and ethically, and they should carefully assess any potential biases and interests of gatekeepers. This can entail collaborating with several gatekeepers to obtain various viewpoints and requesting feedback from other sources to confirm the data.

Aim of Study

To assess the extent to which gatekeepers influence the authenticity of data collected in research studies.
To identify the specific biases and limitations that gatekeepers may introduce during the data collection process.
To propose strategies and recommendations for mitigating biases and enhancing the authenticity of data obtained through gatekeepers.
To examine literature review on the role of gatekeepers in research and their impact on data collection.
To identify and analyze different types of biases and limitations that may arise when gatekeepers serve as data collectors.
To showcase instances as evidence that demonstrate of biases or interference introduced by gatekeepers during data collection.

METHODOLOGY

The study is a qualitative research. The paper employs secondary data for analysis, such as: scholarly publications,

Ways Gatekeepers could be Biase

Informed consent: this is an important ethical consideration in research involving gatekeepers. If gatekeepers are involved in obtaining consent from research participants, it is important to ensure that they are fully informed about the study and its purpose (Flick, 2018)
Cultural Sensitivity: Cultural sensitivity is another important consideration in research involving gatekeepers. Researchers must be aware of the cultural norms and expectations of gatekeepers and the research participants, and take steps to ensure that the data collection process is respectful and sensitive to these factors (Morse, 2015)
Selection bias: Gatekeepers may have their own biases and preferences that influence who they allow access to. This can lead to selection bias in the sample population, which can affect the reliability of the research data (Brannen, 2017)
Power dynamics: The power dynamics between the gatekeepers and the research participants can also affect the reliability and validity of the data collected. For example, gatekeepers may influence the research participants’ decision to participate in the study, which can impact the representativeness of the sample (Denzin and Lincoln, 2017)
Data analysis: The reliability and validity of the data collected using gatekeepers can also be affected by the data analysis process. Researchers must ensure that they are using appropriate methods to analyze the data and account for any potential biases introduced by the gatekeeper (Maxwell, 2013)

It should be noted that while the use of gatekeepers can be an effective means of accessing hard-to –reach population and collecting data that may otherwise be difficult to obtain, it is impossible for researchers to be aware of the potential limitations and challenges associated with this method and take steps to address them in their research analysis.

LIMITATIONS OF USING GATEKEEPERS IN RESEARCH

Gatekeepers in research refer to individuals or institutions that control access to data, resources, or opportunities for researchers. While gatekeepers can play a crucial role in ensuring the quality and integrity of research, they can also impose certain drawbacks. Here are some common drawbacks associated with gatekeepers in research. Bias and Subjectivity: Gatekeepers may introduce biases and subjectivity into the research process. Their decisions on granting or denying access to resources or data can be influenced by personal preferences, conflicts of interest, or preconceived notions, leading to potential distortions in research outcomes (Davies, 2010).

Restriction of Access: Gatekeepers can limit access to resources, samples, or data, hindering the ability of researchers to conduct comprehensive and diverse studies. This limitation may result in a narrow representation of the population under study, reducing the generalizability and validity of research findings (Sorokin & Böhm, 2018).

Time and Cost Implications: The involvement of gatekeepers in the research process can lead to delays and increased costs. Researchers may have to navigate bureaucratic processes, negotiate access agreements, or fulfill additional requirements imposed by gatekeepers, which can consume significant time and resources (Dixon-Woods et al., 2007).

Lack of Transparency: Gatekeeping practices often lack transparency, with decisions made behind closed doors and little accountability. This opacity can lead to suspicions of favoritism, unfair treatment, or selective granting of access, eroding the trustworthiness and credibility of the research process (Davies, 2010).

It is important to note that the impact of gatekeepers on research can vary across disciplines, contexts, and individual experiences. Researchers and gatekeepers should strive for transparent, accountable, and inclusive practices to mitigate these drawbacks and promote robust and ethical research.

Further insight into the activities of using gatekeepers in research has a number of drawbacks in addition to already mentioned facts above which include the followings:

The possibility for gatekeepers to bring bias into the study process cannot be overruled, Birks et al. (2019). The authors point out that gatekeeper could pick participants arbitrarily or hide some information, which might bias the study’s findings. If the gatekeeper has a personal or professional stake in the study or has prior notions about what it should reveal, this might be very problematic.

In a similar vein, Feldman and associates (2020) point out that gatekeepers could have personal agendas or interests that could affect the study process. For instance, a gatekeeper may have a personal stake in promoting a certain item or intervention, which might skew their choice of research participants or their reading of the findings. The authors issue a warning, advising researchers to carefully evaluate the possibility of gatekeeper bias and take precautions to lessen it. Gatekeepers might not always have access to the entire spectrum of people that researchers are interested in investigating, which can further introduce bias. Gatekeepers could only be able to grant access to a certain demographic or group, Brown and Colleagues (2020), which could restrict the generalizability of the study’s findings. To guarantee that they collect a varied and representative sample, researchers should take into account a variety of gatekeepers and tactics for reaching participants.

Additionally, gatekeepers might not always be trustworthy or dependable. Gatekeepers may have personal motives or interests that are in opposition to the objectives of the study, Camara and Colleagues’ (2019). For instance, a gatekeeper could be motivated to grant access to participants who are likely to benefit them somehow, which could jeopardize the validity of the study. Thus it is advisable for researchers to thoroughly vet and pick gatekeepers to make sure they’re dedicated to morally and respectfully conducting research. Last but not the least, gatekeepers might not always be able or ready to take part in the study process. Gatekeepers might not be able to grant access to participants or engage in the research process themselves due to other obligations or priorities, Hammersley and Atkinson (2019). In the event that gatekeepers are unable or unwilling to engage in the study, researchers should have back-up measures in place.

A number of variables, including the gatekeeper’s biases, power imbalances, and cultural insensitivity, might affect the validity of data gathered by gatekeepers in qualitative research. As said, earlier Gatekeepers may lack requisites trainings in handling the hard and soft ware skills for effective dissemination of vital information.

In a similar vein, a study by Davis and Broome (2017) discovered that gatekeepers may ease access to study participants as well as aid in building rapport and trust with them. To ensure the authenticity and dependability of the data gathered, the authors stress the significance of developing precise criteria for choosing gatekeepers and cultivating close relationships with them. Gatekeepers are crucial in qualitative research, particularly when dealing with delicate or stigmatized subjects, as stressed by Willis et al. (2016). The authors contend that gatekeepers can aid in the selection of potential participants, build rapport and trust, and offer insightful information on the cultural and social circumstances of the research.

It is crucial to remember that choosing the right gatekeepers determines how authentic employing gatekeepers are. To make sure they are reliable, possess the necessary knowledge, and have access to the target market, the criteria for choosing gatekeepers should be well thought out. In addition, gatekeepers should be excited about taking part in the study and committed to using ethical and respectful research techniques.

As long as suitable criteria are employed to find and choose gatekeepers who are trustworthy, educated, and dedicated to ethical research standards, the use of gatekeepers in research may generally be a genuine and successful strategy for data collection.

In conclusion, gatekeepers may be useful resources in research, particularly when trying to reach populations who are difficult to approach. However, there are drawbacks to using gatekeepers as well, including potential biases, conflicts of interest, and reduced sample representativeness. Therefore, when using gatekeepers as data collectors, researchers must carefully consider their selection, training, and awareness of their limitations. In order to increase the validity and dependability of their study findings, it is advised that researchers look at a variety of gatekeepers and employ a variety of data collection techniques. To ensure the veracity and integrity of the study findings, a balanced and critical approach to deploying gatekeepers in research is required.

RECOMMENDATIONS

Here are some suggestions for researchers using gatekeepers in research, based on the literature used:

Pick gatekeepers wisely: Gatekeepers who are regarded and trusted by the target community and who have the necessary training, experience, and understanding to collect data should be carefully identified and chosen by researchers.
Train gatekeepers: In order to guarantee that they gather high-quality data, gatekeepers should get training on the research’s goals, data collection techniques, ethical issues, and potential biases.
Monitor gatekeepers: To ensure that they follow the research procedure and that the data obtained are genuine and trustworthy, researchers should periodically review the gatekeepers’ performance and offer criticism.
Use a variety of gatekeepers: A variety of gatekeepers can serve to improve the representativeness of the sample and decrease potential biases.
Use a variety of data gathering techniques: To verify the information obtained via gatekeepers, researchers should make use of a variety of data collection techniques, including surveys, interviews, and observations.
Know the constraints: Researchers should be aware of the inherent biases, conflicts of interest, and limits in sample representativeness associated with utilizing gatekeepers in research.
Researchers should disclose the use of gatekeepers in their studies in order to increase transparency and provide other researchers the opportunity to assess the potential influence of gatekeepers on the accuracy and dependability of the study findings.
Birks, M., Chapman, Y., & Francis, K. (2019) Memoing with and through a research gatekeeper: a reflexive practice. Journal of Research in Nursing24 (3-4), 201-212.
Brannen, J. (2017) Mixing methods: the entry of qualitative and quantitative approaches into the research process. International Journal of Social Research Methodology 20 (6), 613-624. https://doi.org/10.1080/ 13645579.2016.1269476
Brown, C., Thompson, S. C., Graham, I. D., & Griffiths, F. (2020) Exploring the use of multiple gatekeepers in qualitative research on cancer and comorbidity. Qualitative Health Research 30 (4), 572-581.
Camara, N. D., Clark, D., & Spaling, M. A. (2019)The influence of research gatekeepers on recruitment and consent in heart failure research: a qualitative study. Journal of Cardiovascular Nursing 34 (3), 201-206.
Davies, H. T. O. (2010) Respect for research participants and gatekeeping in research. Journal of General Internal Medicine 25 (2), 73–74. doi: 10.1007/s11606-009-1186-7.
Davis, L. L., & Broome, M. E. (2017)Towards a grounded theory of nursing student attrition. Nursing Outlook65 (6), 703-711.doi: 10.1016/j.outlook.2017.06.004.
Denzin, N. K., & Lincoln, Y. S. (2017). The Sage Handbook of Qualitative Research . Sage Publication. https://doi.org/10.4135/9781544308441.
Denscombe, M. (2014) The Good research guide: for small-scale social research projects (5th ed.). Open University Press.
Dixon-Woods, M., Ashcroft, R. E., Jackson, C. J., Tobin, M. D., & Kivits, J. (2007) Beyond “misunderstanding”: Written information and decisions about taking part in a genetic epidemiology study. Social Science & Medicine65 (11), 2212–2222. doi: 10.1016/j.socscimed.2007.06.018
Elzubeir, M., & Rizk, S. (2020). Using gatekeepers to access healthcare professionals for research: Experience from the United Arab Emirates. Journal of Health Specialties 8 (3), 177-181. doi: 10.4103/jhs.JHS_49_20.
Feldman, M. D., Le, P. V., Brown, J., Vaisberg, E., & Sanchez, J. (2020) Gatekeeping and the role of medical writing in disseminating biased research. Current Medical Research and Opinion36 (8), 1349-1354.
Flick, U. (2018) An introduction to qualitative research . Sage Publications. http://doi.org/10.4135/ 9781526432777.
Hammersley, M., & Atkinson, P. (2007) Ethnography: principles in practices (3 rd ). Routledge.
Hammersley, M., & Atkinson, P. (2019) Ethnography: principles in practice (4 th ) Routledge.
Ioannidis, J. P. A. (2005)Why most published research findings are false. PLOS Medicine2 (8), e124. [Link: https://doi.org/10.1371/journal.pmed.
Ioannidis, J. P. A. (2005)Why most published research findings are false. PLOS Medicine 2 (8), e124. https://doi.org/10.1371/journal.pmed.00201240020124]
Kumar, S., Sharma, S., & Sharma, A. (2021) The role of gatekeepers in social and environmental research: A critical review. Environmental Development38 , 100632.doi: 10.1016/j.envdev.2020.100632.
Maxwell, J. A. (2013) Qualitative research design: an interactive approach . Sage Publications
Morse, J. M. (2015) Critical issues in qualitative research methods . Sage Publications. https://doi.org/ 10.4135/9781483389814
Sorokin, P., & Böhm, S. (2018) Gatekeepers and the construction of research samples . In Introduction to the Philosophy of Social Research (2nd ed., pp. 53-68). Routledge.
Willis, D. G., Sullivan-Bolyai, S., Knafl, K., & Cohen, M. Z. (2016) Distinguishing features and similarities between descriptive phenomenological and qualitative description research. Western Journal of Nursing Research 38(9), 1185-1204. doi: 10.1177/019394591665115

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Ethics in Qualitative Research; Gatekeepers

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Determining capacity of people with dementia to take part in research: an electronic survey study of researcher confidence, competence and training needs

Sarah Griffiths 1 ,
Victoria Shepherd 2 &
Anna Volkmer 3

BMC Medical Ethics volume 25 , Article number: 65 ( 2024 ) Cite this article

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Researchers are required to determine whether a person has capacity to consent to a research study before they are able to participate. The Mental Capacity Act and accompanying Code of Practice for England and Wales provide some guidance on this process, but researchers have identified that it can be difficult to determine capacity to consent when a person has complex cognitive or communication needs. This study aimed to understand the experiences and opinions of researchers who recruit people with dementia to research projects, to inform the future development of training resources.

A mixed method, cross-sectional, electronic survey was circulated via social media and research networks in England and Wales. The survey remained open for ten weeks and included open and closed questions exploring respondents’ confidence in determining capacity in the context of recruiting people with dementia to consent, their views on training and support they have experienced and their suggestions for future training and support needs.

60 respondents completed the survey from across England and Wales. Although 75% of respondents had experience of determining capacity to consent with people with dementia to research, only 13% rated themselves as feeling ‘very confident’ in this. Qualitative content analysis of open responses led to the generation of six themes, explaining researchers’ confidence, competence and future training needs in this area: (1) Researcher uncertainties, (2) Lack of time, (3) Balancing information complexity with accessibility, (4) Gatekeepers, (5) Existing enablers and (6) Envisioning future training.

Conclusions

Researchers would benefit from specific training in undertaking conversations around consent with people with dementia. People with dementia may have fluctuating capacity, and despite support from caregivers, researchers have little practical guidance on methods of determining a person’s ability to understand or appreciate the information they have provided during the consent process. Given the development of large complex trials within dementia research, there is an urgency to develop specific and practical guidance and training for researchers working with people with dementia and their families.

Peer Review reports

Individuals with conditions affecting capacity are an under-represented population in research [ 1 ]. Inequity in consent processes likely contributes to this disparity; people with capacity affecting conditions are often assumed to be unable to make consent decisions and therefore routinely excluded from social, clinical and biomedical research [ 2 ]. Consequently, the evidence-base for care and support for populations who may lack mental capacity is inferior compared to other populations. This, in turn, contributes to societal healthcare inequalities, whereby people with dementia are less likely than other more researched groups to be able to access the care and support they need [ 3 ]. Conversely, including people with dementia, who may or may not lack capacity, in research will ensure that health and social care providers can understand and meet these needs. There is, therefore, an urgent need to address barriers to research participation for people who may lack mental capacity.

People with dementia are one such population who may lack the ability to consent [ 4 ] and are frequently excluded from research studies [ 5 ]. The Mental Capacity Act (MCA) [ 6 ] outlines the process to follow in England and Wales if an adult lacks capacity to make a certain decision at a specific time, due to an impairment or disturbance in the functioning of the brain or mind. Sections 30–34 of the MCA provide broad guidelines for conducting research with adults who lack capacity. Although clinical trials are governed under Clinical Trials Regulations [ 7 ] (schedule 1, Part 5) the MCA remains applicable to determining capacity of trial participants. The Mental Capacity Act 2005: Code of Practice [ 8 ] explains that ‘ Researchers should assume that a person has capacity, unless there is proof that they lack capacity to make a specific decision. The person must also receive support to try to help them make their own decision ’ (p204). The Code of Practice provides guidance on use of the MCA and includes advice on when and how to involve a consultee (ideally someone who is close to the person lacking capacity and knows them well personally, rather than a paid carer) to advise on the values and preferences of the person lacking capacity and whether they would have wished to take part in research had they been able to give consent. Whether or not a consultee is involved in the consent process, researchers should seek a person’s assent and respect any indication of their dissent to participating in research, expressed through verbal or non-verbal behaviour, and exclude those who dissent from the research [ 9 ].

Some researchers find the MCA and accompanying guidance difficult to interpret and implement (2, 10). Although the MCA’s vagueness around the meaning of capacity in relation to research allows researchers some flexibility, it also limits opportunities for a standardised process for determination of capacity and can cause researchers a great deal of unease [ 11 , 12 ]. Researchers are concerned about the subjectivity of determining capacity and the tensions between adhering to legislation and the principle of non-maleficence, due to the potential to cause distress by conducting unnecessary tests or over/underestimating a person’s capacity [ 11 , 12 ]. There is ambiguity around the logistics of determining capacity (e.g., measures to use and how to introduce the need for consultee involvement (11) and there are concerns about the time intensive nature of this work balanced against the demands of research timescales (10, 11).

Researchers who carry out stroke research have also reported a lack of knowledge, skills and confidence in supporting people with other capacity-affecting conditions such as stroke related aphasia (10), highlighting a lack of training, tools and time as particular barriers. Research studies including people with stroke aphasia as participants, rarely document study processes used to support their recruitment [ 13 ]. The authors [ 13 ] called for person-centred, individual tailored consent processes to address the complexity of consenting people with stroke-aphasia for research. The need to build capacity and capability within the wider dementia research workforce has been recognised [ 14 ], and programmes such as the National Institute for Health Research Three Schools Dementia Research Programme ( https://www.sscr.nihr.ac.uk/dementia-research-programme/about/ ) have been developed to target funding in this area. However, literature on, and initiatives around upskilling dementia researchers in consent processes are lacking.

There has been some work to develop resources and guidance to support researchers in consenting people who lack capacity such as the outputs from the CONSULT study ( https://www.capacityconsentresearch.com/ ), and training resources on broader aspects of inclusion of people with capacity and communication needs by the ASSENT team ( https://www.uea.ac.uk/web/groups-and-centres/assent ). A small number of tools have been developed, such as the Consent Support Tool ( 15 ) and The Evaluation to Sign Consent Tool [ 16 ]. Neither have been developed specifically for people with dementia, nor do they seek to incorporate informal person-centred approaches and minimise the use of formal testing, which can feel threatening to people with dementia [ 11 ]. There is also growing support for researchers, from organisations such as the Alzheimer’s Society, to ensure people with dementia are involved in shaping the research process from the very start, often as funded co-applicants. At the time of writing this article, a recent government response to the review of clinical trials outlined plans to accelerate dementia trial delivery [ 17 ]. Despite this, little is known about the challenges for, and training needs of researchers who are determining the capacity specifically of people with dementia to consent to research.

It is valuable to further understand the context for consent processes described in dementia research studies undertaken within England and Wales since the introduction of the MCA 2005. The National Institute for Health Research Clinical Research Network Portfolio, at the time of writing, has 383 completed studies on dementia on their database since 2008. A similar search of the Welsh database identified a further 33 studies. It was not within the scope of this paper to interrogate all of these studies, therefore a sample of 41 (10%) of these studies were randomly selected (using random.org) by the current authors to explore how consent processes were described. Of these 41 studies, 24 included people with dementia as participants, whilst others focused on caregivers or other participants. Ten of the 24 studies that included people with dementia as participants, included those who could and those who could not consent, whilst for a further seven it was unclear whether both these groups were included. Thirteen of the 24 studies that included people with dementia provided some description of a consent process (though five of these were very brief, and only 10 mentioned the MCA). Three of the 24 studies described used accessible information sheets, and one a validated questionnaire. Three of the studies described the skills of the researcher/s and the training given to support capacity assessment. This lack of information on consent processes potentially reflects underreporting, due to current journal and reporting standards not requiring this information. As a result, the opportunity for shared learning and improving process is lost.

Several authors [ 18 , 19 , 20 , 21 ] have, however, provided valuable work to inform researchers in supporting people with dementia to take part in research. People with dementia are often able to participate in decision-making in the mild stages of the condition, but this becomes more difficult as the disease progresses [ 18 ]. The literature on decision-making skills of people with dementia highlights specific areas of potential difficulty, such as language comprehension, and reasoning as the cognitive domains most likely to present a barrier [ 4 ]. Researchers in other legal jurisdictions have described person-centered, guiding principles and recommendations for researchers when seeking informed consent in studies involving people with dementia (e.g [ 19 ] - Ireland; [ 20 ] - India; [ 21 ] - Canada). They suggest strategies such as getting to know a person to prepare to provide appropriate support [ 18 ], simplifying consent forms, and using a visual memory aid [ 18 , 19 ]. However, there is still a lack of detailed guidance and training within England and Wales on the real-life application of these principles, to help researchers gauge capacity for decision-making during recruitment e.g., advice on effective practical strategies and ‘in the moment’ communication practices (10). Appropriate knowledge of, and skills in, determining capacity are an ethical imperative if potential research participants are not to be wrongly included or excluded from research.

There is a need for evidence-informed guidance and training for dementia researchers in all areas of dementia research, in determining capacity to consent to research. This would address inequalities, by enhancing opportunities for people with dementia to participate in research informing their care and support. However, to our knowledge, whilst reflective articles have highlighted the challenges and potential facilitators in this area [ 11 , 12 ], there is little understanding of the skills and needs of the researchers themselves.

This study aimed to understand the experiences and opinions of researchers who recruit people living with dementia to research projects, to inform the future development of training resources. We aimed to ascertain:

How confident and competent researchers feel about determining capacity in the context of recruiting people with dementia to research.

The nature of and their views on any training and support they have experienced.

Their perceptions of future training and support needs in this area and how these might be addressed.

Design and setting

A mixed method [ 22 ], cross-sectional, electronic survey was conducted. A survey was considered the most appropriate data collection method due to the lack of existing data on this topic and therefore the need to obtain a wide range of views to understand the broad landscape. It was anticipated that using anonymous survey methods would reach researchers from across England and Wales, with a range of experience and expertise. This article has been informed by the consensus-based checklist for reporting survey studies [ 23 ].

The study was approved by the Chairs of UCL Language and Cognition Department Ethics on 21st November 2022, Project ID LCD-2022-11. All work undertaken in this study was conducted in accordance with the Declaration of Helsinki. Informed consent to participate was obtained from all of the participants in the study. All data were anonymised and stored securely in line with the Data Protection Act, 2018 and UK General Data Protection Regulation guidance, 2016.

Survey development

Based on best practice guidance for survey research (American Association for Public Opinions Research: AAPOR - https://shorturl.at/azET4 ; [ 24 ]. we developed a prototype survey using Qualtrics (2009) software secure survey tool. This captured demographic data that would allow us to describe the respondent group (country of work, age, gender, ethnicity, professional background, length of time working in dementia research and qualification level). To address the research aims, questions were designed to ascertain confidence levels relating to determining capacity, perceived barriers and facilitators to determining capacity, previous training and what was helpful/not helpful about this, existing resources perceived as useful, potential benefits of future training and suggestions for the content of such training. We used a mix of closed questions, Likert scales [ 25 ] and open response fields to capture ‘the “ why” that complements quantitative results, helping to tell a more nuanced story with the data’ ( 26 : p1). To reduce participant burden, the survey was planned to take no longer than 15 min to complete.

The prototype survey was piloted by three researchers with experience of recruiting people with dementia to research projects, who were asked to comment on the design, wording (e.g., how easy the questions were to understand), ease and duration of completion and any other suggestions to improve the design. All three researchers took approximately 10 min to complete the survey. Based on their feedback several questions were refined to improve readability e.g., not to include all the response options in the question, given they are present as response options. Following refinement, the survey was published on Qualtrics. The final version is shown in Appendix One.

Participants and recruitment

Potential participants were eligible if they were researchers with experience of recruiting people with dementia within England or Wales, where MCA legislation applies. There is a lack of population size data for these target respondents. Therefore, rather than calculating a probability or non-probability sample size, it was more appropriate to take a pragmatic census approach to recruitment, whereby responses are desired from as many participants in the undefined target population as possible [ 27 ].

The survey was advertised via social media, dementia research networks, (the National Institute for Health Research Dementia Researcher [ 28 ], recipients of NIHR Dementia Research Fellowships and Career Development Awards, and DemiQual [ 29 ]), and emails to relevant university research departments. Before completing the survey, potential participants were able to click a link to access further study information and to provide consent. The survey was open for ten weeks, to capitalise on weekly social media reminders and encouragement to respondents to share the survey in a snowballing approach [ 30 ]. Responses were considered invalid and therefore excluded from analysis if: consent questions were started/completed but survey questions not attempted, only consent and demographics questions were answered, or respondents closed their browser mid-way through completing the survey (the latter was treated as withdrawal).

Closed field responses were analysed using descriptive statistics. The sample did not allow for the use inferential statistics, although some tentative comparisons have been made (see results).

Open field responses were analysed using content analysis, described by Patton ( 31 : p453). as a ‘qualitative data reduction and sense-making effort that takes a volume of qualitative material and attempts to identify core consistencies and meanings.’ Taking a more in-depth analytic approach such as reflexive thematic analysis [ 32 ] was not appropriate for data collected via online survey, where responses are typically brief, with no opportunities for researchers to probe for deeper understandings [ 33 ]. The open-ended responses were intended to enhance the quantitative fundings rather than produce standalone rich insights [ 34 ].

We followed the steps of ‘conventional content analysis’ [ 35 ]. SG and AV engaged in multiple readings of the entire data set and separately coded for initial categories derived directly from that data (inductively). Where meanings were unclear, data was left uncoded. SG and AV then compared categories and agreed how they could be merged and streamlined, thus deciding on the preliminary code set. They then recoded the data deductively and inductively, examined all data within each code, and agreed on codes that could be split, combined or abandoned. Finally, they considered how codes could be reframed into themes, to provide a coherent explanation of participants’ opinions on their confidence, competence and training needs relating to determining capacity.

There were 86 survey responses, 14 of which were excluded from the study as the consent section was not completed. Twelve were excluded from the study as participants completed the consent section but closed their browser mid-way through. 60 complete responses were included in the analysis.

Respondent demographics

Of the 60 respondents, three (5%) reported doing research in both England and Wales, 50 (83%) respondents reported doing research in England only and seven ( 12%) respondents did not complete this field. 49 respondents were women (82%; see further demographic data in Table 1 ).

Experience of determining capacity to consent

Nine respondents (15%) had no experience of determining a potential participant’s capacity to consent to a study (Fig. 1 ), whilst 43 (72%) had determined between one and 100 participants’ capacity to consent, and seven (12%) had determined more than 100 participants’ capacity to consent. Respondents with fewer years’ experience had generally recruited fewer participants. All respondents with less than one year of experience ( n = 6) had recruited 1–20 participants, respondents with 1–2 years’ experience reported recruiting 0 ( n = 1), 1–20 (= 3) or 20–40 participants ( n = 4). Two participants with 1–2 years’ experience reported recruiting 40–100, or more than 200 participants respectively. Participants with 10–15 years’ experience reported recruiting 1–2 participants ( n = 1), 40–100 ( n = 3), 100–200 ( n = 1) and participants with more than 15 years’ experience reported recruiting 40–100 ( n = 1) or 100–200 ( n = 2). Most respondents felt fairly confident (35, 58%) or very confident (8, 13%) in determining capacity to consent (Fig. 2 ). Six respondents were neither confident nor not confident, whilst eight (13%) were not very confident and three (5%) not at all confident. Of those who rated themselves as very confident or fairly confident, a total of eighteen had more than 15 years’ ( n = 14) or 5–10 years’ ( n = 4) experience in recruiting people with dementia to research, whilst ten had less than one year or 1–2 years’ experience. Similarly, of those who rated themselves as not very confident or not at all confident, one respondent had 10–15 years’ experience, and four had less than one year or 1–2 years’ experience. This suggests that experience in recruiting people with dementia to research did not necessarily mean respondents felt more confident about determining capacity.

Number of people for whom respondents had determined capacity

Confidence in determining capacity to consent

Training to determine capacity to consent

Two thirds of respondents (40, 66%) reported having had previous training on how to determine capacity to consent. Of these 40 respondents, 15 had clinical backgrounds (comprising 75% of the respondents with a clinical background). Just over two thirds of the entire respondent group (41, 68%) felt they would benefit from training or further training to address any uncertainties in their skills.

Analysis of open-ended responses

Data collected from respondents who answered open questions relating to researcher confidence, competence and future training needs informed the development of six main themes: (1) Researcher uncertainties ( subthemes: knowledge of, and confidence in, the process, determining understanding and retention, juggling family members, and managing the fluctuating nature of capacity) (2) Lack of time, (3) Balancing information complexity with accessibility, (4) Gatekeepers , (5) Existing enablers ( subthemes: training and background, tools and resources, communication strategies ), and (6) Envisioning future training ( subthemes: experiences of past training and future training needs). We now present these themes, illustrated with quotes from the online data where responses were expansive. The presented quotes are not linked to respondent characteristics, as this would threaten anonymisation, due to low numbers within some demographic categories.

1. Researcher uncertainties

Whilst a limited number of respondents reported having no uncertainties, the majority articulated their worries about how to go about aspects of determining capacity.

Knowledge of, and confidence, in the process

Respondents expressed uncertainties about who should determine capacity and where to start:

‘ Who is responsible for judging capacity?’ ‘ …not sure on what questions to ask and how.’ ‘ I don’t know all the steps I need to follow to determine if someone has capacity. I don’t know if there are any steps even.’

There was also uncertainty around how formal or informal the process should be:

‘ Knowing whether something formal needs to be in place or if it is sufficient to assume capacity unless there appears to be reason to be concerned.’

There was a sense of not knowing what is not known:

‘ I’m confident that I am able to follow ethical processes but am sometimes concerned there are legal processes that I am not aware of.’

Respondents expressed uncertainty over how to justify decisions:

‘ …making sure I have justifiable reasons for why I believe someone does, or does not, have capacity.’

This leads to a lack of confidence, worries about making mistakes, and fears that mistakes could have a negative emotional impact on people with dementia. For example, one participant expressed a ‘ fear of getting it wrong’ and another described worries about ‘inadvertently causing distress if judgment of capacity is incorrect.’

These fears are fuelled by the knowledge that capacity judgements are subjective; there will always be doubt and no way of checking:

‘ Can’t always confirm. Some degree of doubt is present.’

Determining understanding and retention

Whilst researchers were aware of the need to tailor research information to a person’s level of comprehension, they had uncertainties about how to determine whether the recipient has understood and retained enough information to make an informed decision regarding participation (MCA, 2005). For instance, speaking about people with dementia being recruited to studies, one respondent stated that it is:

‘ …sometimes difficult to ascertain if they understand the entire study if it is complex…difficult to tell…if they are quiet or give short answers.’

Respondents expressed concerns about the impact of power imbalance or social dynamics on determining understanding:

‘ I’m worried that someone with dementia might say they understand something when they don’t just out of social obligation or because they’re embarrassed.’

These uncertainties are amplified when the person with dementia gives brief answers to questions, is nervous, is adept at hiding their comprehension difficulties or has unmanaged hearing loss.

‘ Some people have very good masking/compensating mechanisms…excellent conversationalists.’

Juggling family members

Respondents were uncertain how to deal with situations where family members talk over or answer questions on behalf of people with dementia:

‘ It can be difficult to assess someone’s capacity when there is a family member answering questions for them.’

There may also be differing desires to participate in the research between the family members, and the person with dementia which can influence the dynamic, when carers are supporting communication:

‘ Those around the person being keen for them to take part, so interjecting in the assessment with their views and giving answers for the person.’

There can also be differing views on capacity within the family, which respondents felt could influence capacity decisions. At times, family members were said to:

‘…not want to accept that the person with dementia may not have capacity’ or ‘ …present biased views on [the person’s] capacity, which could all blur my clarity on the person’s capacity to give consent.’

Another respondent raised uncertainties around how to involve family carers in a way that does not cause the person with dementia to become embarrassed and/or disempowered:

‘ It’s difficult to include carers in the process without making the person with dementia feel embarrassed or that I’m implicitly implying that they lack capacity. But including a carer would be very helpful, so this is difficult to navigate .’

Managing the fluctuating nature of capacity

Respondents were particularly concerned about how to take account of day-to-day fluctuations in cognition associated with dementia. In one respondent’s words there were uncertainties around ‘how to incorporate ongoing capacity judgement throughout a study lifetime.’

There was also a worry that fluctuations in cognition might lead to unnecessary exclusion of people with dementia in research:

‘ My uncertainties are around fluctuating cognitive abilities…and the fact that capacity to consent in the here and now might not be there even after a short period of time. Or in the reverse circumstance, that I exclude someone from research based on their incapacity to give consent at a given time, when potentially shortly after they could be involved in research.’

2. Lack of time

Respondents felt strongly that determining capacity requires the development of trusting relationships over time, with researchers collecting background information (e.g., about how the person usually demonstrates a decision) and getting to know the person with dementia:

‘ When you don’t have much time to get to know a person prior to the start of the research, it can be more challenging to assess changes in capacity during the data capture.’

However, lack of time was commonly cited as a barrier to conducting such person-centred capacity judgements:

‘Only short amounts of time with the individual, over phone or zoom, is very hard .’

Respondents described trying to do this work whilst responding to the pressure of competing research priorities such as recruitment targets and tight timelines, resulting in ‘time constraints on [participant] visits.’ Respondents identified a perceived ‘…conflict between recruitment targets and doing an objective assessment of capacity.’

3. Balancing information complexity with accessibility

Respondents identified a conflict between ethical requirements to explain specific concepts such as study procedures, informed consent, anonymity and data protection on the one hand, and the communication needs of people with dementia:

‘The complexities of data protection are often poorly described in [study information] and consent forms and it is bewildering and can be difficult to explain the meaning.’

Presenting abstract concepts in accessible ways was seen as challenging, especially for complex research studies with several elements. Even respondents with experience of clinical capacity assessment and developing accessible resources, e.g., speech and language therapists, found that this experience was not necessarily transferable to the research context, and the need to balance ethical requirements with participants’ need for accessible research-specific information:

‘As someone with a clinical background, I have some experience of assessing capacity. However, formal assessment for capacity to consent to collection and, more importantly, use of data, I am less confident with. I am concerned that consenting […] might be too abstract a concept/process for some people with reduced/altered/changing cognition.’

4. Gatekeepers

Family members and formal carers were sometimes seen to function as gatekeepers to research participation, making decisions about whether person with dementia would be suitable for or would want to take part in the research, thus preventing researchers from even getting to the stage of determining capacity:

‘ Clinical staff and sometimes families gatekeep and don’t even let you talk with the person with dementia.’

Experiences of gatekeeping extended to regulatory bodies, seen to block researchers from engaging people with dementia in the process of establishing capacity to consent:

‘ …the ‘blanket’ label of vulnerable is applied to people living with dementia and is embedded in key processes such as seeking ethics approvals…it was suggested to me by an Ethics/REC some years ago that the care team should assess capacity rather than the researcher - this felt undermining.’

5. Existing enablers

Respondents identified existing sources of support, skills and personal attributes that they felt were enabling their capacity judgment work. These included their professional training and background, tools and resources, and communication strategies (sub-themes).

Training and background

Some respondents felt that formal training, such as that delivered by the National Institute for Health Research ( https://www.nihr.ac.uk/health-and-care-professionals/training/good-clinical-practice.htm ) and https://cpduk.co.uk/courses/nihr-clinical-research-network-informed-consent-with-adults-lacking-capacity ), had supported them to develop skills to involve people who may lack capacity in research. Other helpful sources of support included experiential learning, particularly talking to and observing more experienced researchers. Respondents also felt that having a secure and detailed understanding of the research study allowed them to feel more confident, as did having a clinical background, although as identified in theme 3 this was not always the case.

Tools and resources

Whilst resources to support capacity judgment were felt to be generally lacking, available tools which respondents reported as helpful were the MCA code of practice, the ‘capacity and consent to research resources’ website ( https://www.capacityconsentresearch.com/ ), homegrown checklists to guide determination of capacity and consent based on the four stages of the MCA, the ‘Dementia Enquirers Gold Standards for ethical research [ 36 ],’ Talking Mats [ 37 ] and research papers on this topic (e.g., 11). Respondents also explained that working with patient and public involvement and engagement (PPIE) contributors throughout a research project was a valuable resource, offering support and advice. PPIE involves people who have lived experience of an area of health or social care informing and shaping research and its dissemination in that area.

Communication strategies

Respondents described several communication strategies they felt they could use in supporting potential participants to consent including taking the time, wherever possible, to build relationships and trust with potential participants (although Theme 2 explores the barrier created by time constraints) and bringing an ‘openness’ and ‘willingness to engage in everyday informal conversation.’ Asking family members for advice on communication strategies specific to the individual, developing accessible Participant Information Sheets and consent documents, ensuring that there is a private space for consent conversations and having those conversations ‘over a cup of tea, ’ were also strategies cited as being within respondents’ existing ‘toolkits.’ In conversations, respondents identified several strategies including ‘providing a summary of information, and breaking things down into smaller chunks .’ They also described presenting graded information (the simplest messages first, becoming more complex to gauge understanding), checking comprehension by asking people what they have understood and/or inviting their questions about the research.

6. Envisioning future training

Where respondents had experienced some training in this area, they regarded the practical elements as most helpful e.g., shadowing and debriefing with colleagues. A lack of focus specifically on the challenges relating to dementia (as opposed to other conditions where capacity is relevant), was felt to be less helpful:

‘Some information seemed very detached from the reality of working with someone with dementia .’

They reported a tension between courses focusing on ensuring trainees understood the legal aspects (the MCA and its background) rather than the how of determining capacity. In respondents’ experience, training encountered had not provided sufficient in-depth and nuanced consideration of specific challenges and complexities related to involving people with dementia in research:

‘ It’s not all black and white, yes/no.’

Respondents overwhelmingly wished for future training in this area to be practical in nature. Table 2 summarises specific suggestions from respondents for future training in this area.

The findings from this study add to current research evidence on the experiences and opinions of researchers working with people who may lack capacity, specifically with people with dementia, an area as yet not explored in great detail. Similar to previous research in stroke aphasia (10), this survey study of English and Welsh researchers demonstrates that despite having experience in, and education on, the legislative aspects of capacity assessment, their levels of confidence in determining a person with dementia’s ability to consent to research were not consistently high. Their experiences of training highlighted a lack of training specific to working with people with dementia and their families, and a need for practical training to support them to assess a person’s ability to understand and weigh up information. Respondents emphasised a need for time, resources and tools to enable them to get to know a person with dementia and their communication needs, in order to provide appropriate supports in the decision-making process. They flagged the tensions in their role, and the pressure to recruit participants. Concerns expressed about clinical staff and regulatory bodies gatekeeping access to people with dementia, making decisions about their suitability for research involvement, is contrary to the MCA, which requires the decision-maker (researcher) to determine capacity, albeit alongside others with in-depth knowledge of the person. This indicates that there is confusion about implementing the MCA amongst not just researchers, but those with whom they need to collaborate. Data collected from respondents addressed the key objective of the study, by highlighting a need for specific training and guidance on how to overcome such challenges and how best to include people with dementia in research. Interestingly, uncertainly over recording the processes by which capacity is determined, and documenting the outcome, were not seen as strong themes, however future research could seek to explore this area.

This study builds on the current and contemporary literature in this field. Our findings fit with existing knowledge that researchers are uncertain about legal frameworks governing research with adults lacking capacity more broadly (not just regarding how to determine capacity) [ 38 ]. Lack of confidence about operationalising the MCA and of access to training have also been found amongst health care professionals (HCPs) carrying out capacity assessments in clinical settings [ 39 ]. Our respondents’ fears of getting it wrong resonate with the concerns of researchers and health care professionals about conducting trials involving people who lack capacity, that ‘the ethics police will come for you.’ ( 40 : p7). Like our respondents, HCPs wish for training to focus on practical issues [ 41 ]. Combined with this growing evidence, our findings make a clear case for a more joined up approach to research on the processes that embody the legislative components of assessing of decision-making capacity.

Understanding the needs of researchers undertaking capacity assessments will better inform the development of future guidance and training. This builds on previous work in this field demonstrating that researchers working with people with stroke-related aphasia do not feel confident in making judgments about people’s ability to consent (10). There is guidance for researchers, not least the MCA and accompanying Code of Practice, but also more specifically resources such as the capacity and consent to research resources’ website arising from the CONSULT study and resources developed by the ASSENT team. Whilst these resources do try to take account of complex situations, and cognitive and communication difficulties, they were not specifically designed for researchers working with people with dementia. This study extends previous reflective work [ 11 , 12 ] by identifying the specific and current needs of researchers working with people with dementia across England and Wales. There is great potential to contribute to a developing suite of researcher resources, with specialized training tools on determining capacity for research related to dementia.

People with dementia have unique support needs when being consented for participation in research. Future research to interrogate the reporting of consent procedures in research with people with dementia across England and Wales since the publication of the MCA (2005) would inform our understanding of current practice. Given current significant advances in the field of dementia research, potential participants are often making consent decisions about becoming involved in a variety of research, from small scale theory development projects to multicentre, multistage intervention trials, including a range of qualitative, quantitative and mixed methods. The need for inclusive consent processes applies across all these types of research. Survey respondents highlighted that people with dementia may need to understand a large amount of complex information in relation to their potential participation. They and their families may have personal agendas about participation, for instance where studies are trialling potential life changing, possibly curative interventions. Yet people with dementia may present with fluctuating capacity to consent over the course of a study, which respondents emphasised as being difficult for them to manage both practically and ethically. Dewing [ 42 ] describes the concept of process consent, providing principles to consider when supporting older people, including spending time getting to know them. Importantly, Dewing provides several examples of how to interpret what the person with dementia says, yet does not describe what the researcher should ask to check they understand information provided. Given researchers identified time as a barrier, it would be useful to explore how Dewing’s description of process consent could be modified in more time critical research. It seems timely that a set of reporting standards, guiding the appropriate enactment of the MCA, should be developed and implemented by peer reviewed journals to ensure transparency. Given the likely increase in the number and complexity of future trials in this field, evidenced by the recent UK government’s plans to pilot a new clinical trial delivery accelerator for dementia research [ 17 ], there is an urgent need for such reporting standards.

Survey respondents highlighted that care partners can be helpful in supporting communication between the researcher and the person with dementia during consent conversations. However, they also identified concerns about wanting to employ strategies that do not disempower the person living with dementia during these triadic interactions. Conversation Analysis (CA) is a method for examining the turn-by-turn detail of talk-in-interaction [ 43 ]. Using CA, several studies developed training to support health and social care professionals [ 44 ] or care partners [ 45 ] in interacting with people with dementia in a multimodal way that foregrounds relationships and power dynamics. These training programmes used CA to explore moment-by-moment phenomena within conversations and identify behaviours acting as barriers and facilitators to interactions. It seems logical that CA could provide an ecologically valuable method of understanding what researchers say and do that assist or hinder conversations around consent. Indeed, Wade et al. [46] used CA methods to understand how researchers can maintain equipoise during consent sessions, presenting information in an unbiased way. Similarly, future research using CA methods to explore interactions during consent sessions with people with dementia could inform methods for accessible presentation of information.

Limitations

Respondents in this study were recruited via online social media sites, and research networks known to the authors. This may have contributed to the gender bias in the respondent sample. Obtaining a representative sample in future research will be helpful to ensure the data collected is representative of the research community, and asking about whether respondents have undertaken clinical trials and other types of research would be useful. Additionally, whilst this study surveyed the views of researchers, future research in this field should ensure that the views of people with dementia and their care partners are considered. Any future training intervention must be situated in the needs of the people with dementia and their care partners and co-produced with them.

Despite the eligibility criteria outlined at the start of the survey, indicating respondents were eligible for participation only if they undertook research in England and Wales, seven respondents did not complete the field indicating whether they did research in England and/or Wales. A limitation of the survey design was that it was not compulsory for respondents to complete this question.

Survey studies are a useful method to reach a large number of respondents, however, the nature of the study design limited the qualitative data collected in that it is not possible to probe or clarify responses. Indeed, it might have been useful to explore the underlying meaning of several responses. Despite this, there was a large volume of qualitative data collected. In using a content analysis approach to identifying themes in the data the researchers themselves acknowledge their positions as both clinically trained speech and language therapists and dementia researchers may have biased their interpretation of the data. However, this position also enabled them to identify specific concerns voiced by researchers that might be addressed through the development of CA informed training.

This research has a particular focus on researchers within the legal jurisdiction of the MCA 2005: England and Wales. However, whilst the geographical legislative boundaries may mean subtle or larger differences in legal practice, many principles relating to supporting people in decision making are universal as advocated by the United Nations Convention of the Rights of People with Disabilities ( https://www.un.org/disabilities/documents/convention/convoptprot-e.pdf ). Consequently, the recommendations for researchers working with people with dementia outlined in this paper may be considered good practice at an international level.

This survey study of English and Welsh researchers demonstrates that despite having experience in, and education on, the legislative aspects of capacity assessment, they identified training needs in undertaking conversations around consent with people with dementia, who may have fluctuating capacity. Despite support from care givers, researchers have little practical guidance on methods of determining a person’s ability to understand or appreciate the information they have provided during the consent process. Given the development of large complex trials within dementia research, there is an urgency to develop specific and practical guidance and training for researchers working with people with dementia and their families.

Data availability

The deidentified data that support the findings of this study were collected through and are held by University College London. Quantitative data is available from the authors upon reasonable request to the first author: [email protected]. Qualitative data will not be available, to protect participant anonymity. Requests to use data will be submitted on a standard form and reviewed by the authors prior to data-sharing agreements being developed.

Abbreviations

Conversation Analysis

Healthcare professional

Mental Capacity Act

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Acknowledgements

We are grateful to all the researchers who completed the survey and informed the study.

SG receives support from the NIHR Applied Research Collaboration North Thames and Alzheimer’s Society and is funded through a Post-Doctoral Fellowship. The views expressed are those of the authors and not necessarily those of the funders, NHS or Department of Health and Social Care.

VS is supported by a National Institute of Health Research Advanced Fellowship (CONSULT) funded by the Welsh Government through Health and Care Research Wales (NIHR-FS(A)-2021). AV is funded by an NIHR Advanced Fellowship NIHR302240.

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SG and AV devised the project, collected and analysed the data and wrote the first draft. VS advised on methods and background and commented on drafts.

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Griffiths, S., Shepherd, V. & Volkmer, A. Determining capacity of people with dementia to take part in research: an electronic survey study of researcher confidence, competence and training needs. BMC Med Ethics 25 , 65 (2024). https://doi.org/10.1186/s12910-024-01056-6

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Received : 25 January 2024

Accepted : 08 May 2024

Published : 28 May 2024

DOI : https://doi.org/10.1186/s12910-024-01056-6

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Gatekeepers in Qualitative Research
Request PDF | Gatekeepers in Qualitative Research | Gatekeepers are essential mediators for accessing study settings and participants within social research. They may be persons within ...
A Delicate Balancing Act: Negotiating with Gatekeepers for Ethical
This includes evaluating gatekeepers' motives, how routes of access affect research participation, and how the relationship between a gatekeeper and researcher is established and maintained. While scrutiny of these issues varies across review boards, they still must be negotiated by researchers in the field and have important implications for ...
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The term 'gatekeeper' is often reserved by researchers in social sciences to refer to actors controlling access to the field (Aaltonen & Kivijärvi, 2019). ... Surveying through gatekeepers in social research: methodological problems and suggestions ... Recruiting participants through gatekeepers has been widely discussed in qualitative ...
A Delicate Balancing Act: Negotiating with Gatekeepers for Ethical
research and are seldom heard or for research involving sensitive subjects (Eide & Allen, 2005; Knight et al., 2004; Yancey et al., 2006). They have the power to deny access to the researcher and they may also influence whether individuals opt in and out of a process. By negotiating directly with prospective research participants, gatekeepers ...
The Role of Gatekeepers in Research: Learning from Reflexivity and
Researchers need to engage and involve the gatekeeper/s early in the research process. Other positive influences include sharing of clear information with the purpose of the research, the gatekeeper being motivated with a positive attitude to research which is also supported within the gatekeeper{\textquoteright}s environment.
Getting past the gatekeeper: Cultural competence, field access and
Background: Increasingly researchers are recognising the importance of including the perspectives of children and young people in research and in the development of interventions and innovations, in order to understand children's lives on their own terms.Purpose: This article reflects on the potential risks posed to children and young people in research and the role of gatekeepers in granting ...
Contextualising the role of the gatekeeper in social science research
seeking access to an institution for research purposes. A gatekeeper is described as someone who controls access to an. institution or an organisation such as a school principal, managing ...
Relationships Between Gatekeepers and Researchers: The ...
The Impact of Identity Work in Negotiating Research Access' Qualitative Social Work 11(3): 249-65. Article Google Scholar Scourfield. P. (2012) 'Defenders Against Threats or Enablers of Opportunities: The Screening Role Played by Gatekeepers in Researching Older People in Care Homes' The Qualitative Report 17(28): 1-17.
(PDF) Gaining and Maintaining Access: Exploring the ...
Gatekeepers occupy increasingly important positions within qualitative social work research and their engagement with research is crucial to the ongoing development of a useable knowledge base.
(PDF) Gaining and Maintaining Access Exploring the Mechanisms that
1 sampling Downloaded from qsw.sagepub.com at University of Sheffield on October 26, 2010 2 Qualitative Social Work X(X) INTRODUCTION While the term 'gatekeeper' can be used in a number of different ways, gatekeepers within the research process are typically described as the individuals, groups, and organizations that act as intermediaries ...
The Role of Gatekeepers in Research: Learning from Reflexivity and
Gatekeepers in research can influence the research progress and access to participants based on their assumptions and preconceptions about the implications of the research. ... (accessed January 2016). [2] Berg BL. Lune H. Qualitative research methods for social scientists, 5th edition, Boston: Allyn & Baker 2004, pp 24, 218-219. [3] Gray D ...
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"You have to say everything is nice here": Complexities of gatekeeping
Although this dynamic has been thoroughly described within methodological literature, there exists a tendency to presume research-gatekeeper relations as static; once established, there is little discussion on how the relationships develop or can be managed, once access has (or has not) been achieved.,The paper draws upon qualitative ...
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Reflexivity in Conducting Qualitative Criminological Studies Through the Use of Gatekeepers. Qualitative research allows the researcher to emerge as the subject under study and develop sensitization concepts that improve the understanding and explanation of reality and phenomena (Miller & Palacios, 2015). Qualitative research includes ...
Gatekeepers in Qualitative Research
Gatekeepers in Qualitative Research. Gatekeepers are essential mediators for accessing study settings and participants within social research. They may be persons within organisations who have the power to grant or withhold access to people or situations during research into organisations. Gatekeepers may also represent any individual or group ...
Seeking Approval from Universities to Research the Views of Their Staff
A "gatekeeper" controls access to an organization; "gatekeeper approval" is often needed before external research can take place within an organization. We explore the need for gatekeeper approval for research with university staff employing, as a case study, a project which collected data in Australia.
Ethnography: The Vital Roles of Gatekeepers & Informants
The following is a modified excerpt from Applied Qualitative Research Design: A Total Quality Framework Approach (Roller & Lavrakas, 2015, pp. 202-204), a qualitative methods text covering in-depth interviews, focus group discussions, ethnography, qualitative content analysis, case study, and narrative research. ... Gatekeepers are typically ...
Gatekeepers in qualitative research; not so scary after-all
What is more common, according to findings in our Qualitative Researcher Journeys project, is the systemic issue of gatekeepers on review boards and funding bodies that will block your qualitative research because of a failure to understand, or value, the iterative nature of qualitative research. As a systemic issue you cannot tackle this alone ...
The Authenticity of Gatekeepers as Means of Data Collection in Research
Gatekeepers are crucial in qualitative research, particularly when dealing with delicate or stigmatized subjects, as stressed by Willis et al. (2016). The authors contend that gatekeepers can aid in the selection of potential participants, build rapport and trust, and offer insightful information on the cultural and social circumstances of the ...
A difficult negotiation: fieldwork relations with gatekeepers
The focus of the article is on how access was gained and how the site and the people who took part in the research were left at the end of the fieldwork. Key issues include: formal and informal gatekeepers to study sites; participants and forms of data; rapport; attachment to researchers and; deciding when to end fieldwork.
Ethics in Qualitative Research; Gatekeepers
Entering into a research project with the gatekeeper having identified the ethical considerations as a paramount desire for protection of the participants is an essential first step to ensuring ethical qualitative research. References Campbell, J. (2012 , January 13). Introduction to Ethics in Qualitative Research. 44(Section 1.5).
Determining capacity of people with dementia to take part in research
Qualitative content analysis of open responses led to the generation of six themes, explaining researchers' confidence, competence and future training needs in this area: (1) Researcher uncertainties, (2) Lack of time, (3) Balancing information complexity with accessibility, (4) Gatekeepers, (5) Existing enablers and (6) Envisioning future ...
Successful Recruitment to Qualitative Research: A Critical Reflection
The methodology literature contains articles chronicling recruitment difficulties in qualitative research (e.g., Bonisteel et al., 2021; Price et al., 2020), but reports of successful recruitment are limited.Motivations to participate in research have received some attention in the literature, but such accounts of motivation are largely anecdotal and from the perspective of the researcher (e.g ...

The Role of Gatekeepers in Research: Learning from Reflexivity and Reflection

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Determining capacity of people with dementia to take part in research: an electronic survey study of researcher confidence, competence and training needs

Conclusions

Design and setting

Survey development

Participants and recruitment

Respondent demographics

Experience of determining capacity to consent

Training to determine capacity to consent

Analysis of open-ended responses

1. Researcher uncertainties

Knowledge of, and confidence, in the process

Determining understanding and retention

Juggling family members

Managing the fluctuating nature of capacity

2. Lack of time

3. Balancing information complexity with accessibility

4. Gatekeepers

5. Existing enablers

Training and background

Tools and resources

Communication strategies

6. Envisioning future training

Limitations

Data availability

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