Contextualising and challenging under-representation in research in light of cultural trauma: a scoping review and qualitative focus group study

doi:10.21203/rs.3.rs-3940692/v1

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Research Article

Contextualising and challenging under-representation in research in light of cultural trauma: a scoping review and qualitative focus group study

https://doi.org/10.21203/rs.3.rs-3940692/v1

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Background

Although underserved populations— including those from ethnic minority communities and those living in poverty—have worse health and poorer healthcare experiences, most primary care research does not fairly reflect these groups. Patient and public involvement (PPI) is usually embedded within research studies in the United Kingdom (UK), but often fails to represent underserved populations. This study reviewed current literature and worked with patient and public contributors and local community leaders, situated in a socio-economically deprived and ethnically diverse urban area, to explore under-representation in research.

Methods

This study had two phases: a scoping review to identify theory and recommendations about engaging underserved groups in health research; two qualitative focus groups, one with a purposive sample of 6 members of a Patient and Public Involvement Group (PPIG), and one with 4 community leaders (representing black, South Asian, Roma and socio-economically deprived communities). An iterative analysis process based on template analysis was used. Focus group 1 was rapidly analysed, and a template created. Findings were presented in focus group 2, and the template further developed. In-depth analysis of both focus groups was then performed based on the template. Literature review and focus group data were triangulated using the concept of cultural trauma as a theoretical framework.

Results

Wider societal and historical influences have degraded trust in academic and healthcare institutions within underserved populations. Along with more practical considerations, trust underpins personal motivations to engage with research. Researchers need to invest time and resources in prolonged, mutually beneficial engagement with communities of importance to their research, including sharing power and influence over research priorities. Researcher reflexivity regarding differential power and cultural competencies are crucial. Utilising participatory methodologies including co-production demonstrates a commitment to inclusive study design.

Conclusions

Re-framing evidence-based medicine to be more useful and relevant to underserved populations with the highest burden of ill health is urgently needed. Lack of representation in health research reflects wider societal inequalities, but there are actions that researchers can take to widen representation. This will ultimately help achieve the goal of increased health equity by enhancing scientific rigour and research generalizability.

Deprivation

minority

diverse

inclusion

participation

representation

inequality

inequity

primary care

underserved

The problem

People living in poverty, and people from ethnic minority communities may be referred to as ‘underserved’. Underserved communities benefit less from health services, and along with other factors, this leads to health inequalities. Primary care research does not include enough people from these communities. This makes the health inequalities worse.

What we did

This study looks at why people from underserved communities are not included in research. It also looks at what might help. We looked at already published studies to see if there is any advice for researchers. We also had focus group discussions with members of a Patient and Public Involvement Group (PPIG) recruited from areas where more people live with social disadvantage , and local community leaders. We found a useful theory about how cultural history affects what people can do. We used this to help us help us to understand how our findings could improve and widen participation in research within underserved communities .

What we found

We found that trust is very important. There needs to be trust between people and organisations. There are also practical reasons people from underserved communities might not be able to get involved. Researchers need to be aware of these things, and work with people from these communities throughout all stages of research. Long term relationships need to develop between institutions and people doing research. Understanding each other’s culture and history makes it easier to work together.

Research suggests that people from underserved populations including persons living in poverty and people from ethnic minority communities have poorer health, and poorer experiences of using health services (1, 2, 3) with the two characteristics combining to create compounded intersectional inequity. The majority of health research does not have adequate representation from people of these communities (3, 4).

‘Evidence based medicine’ across a range of common health conditions is derived from studies which exclude certain populations within their design, thereby potentially perpetuating health inequalities (5, 6). The UK National Institute for Health and Care Research (NIHR ) produced INCLUDE guidance (7) to improve inclusion of underserved groups in research. The importance of building trust with communities already subjected historically to structural and institutional discrimination is highlighted, but there is a dearth of research about how to build trust and mutual understanding to inform inclusive research practise.

Despite ample research evidence demonstrating that lack of engagement not only resides in under-represented communities but also in research teams and institutions (8), the lack of progress suggests the need for reflective research practice to find solutions to this challenge. We also suggest that the issue needs to be seen in the context of wider societal issues. The idea of ‘cultural trauma’ as a mechanism to disrupt health and create disparities proposed by Subica and Link (9) suggests damage to three health-protective cultural resources: cultural modes, institutions, and lands, as the underlying cause for health inequalities. Cultural modes encompass “the languages, norms, customs, values, and artefacts” that create the internal and external worlds of group members. Institutions refers to the systems that define social and community life such as family, educational, religious, and health systems. ‘Lands’ is used to describe material resources such as property, housing, food and transport. Subica and Link (9) use this concept to explain the mechanisms by which health inequalities are created. We suggest that this can be further applied to under-representation of certain groups in health research, which may contribute further to health inequalities.

A recently published paper (10) outlines steps to move from tokenism to citizen control in the research process, to increase representation in research:

Build trust and dialogue by exchange of ideas in a community setting, led by community members.
Include knowledge sharing about the topic of interest with patients and communities, for example, producing lay summaries of a literature review and bringing in a topic expert for a ‘question and answer’ session.
Support the development of research skills in communities where it is desired (capacity building).
Co-create from the outset and at every stage of the research process to include generating and prioritising research questions relevant to the public.

Working with patients from a PPIG based in a low socio-economic area with an ethnically diverse population, and with local community groups that support underserved groups, this study aimed to explore how to increase representation in research from the perspective of underserved groups.

We used a qualitative iterative methodology, triangulating data from three different sources to facilitate a rich understanding of the barriers and facilitators of participation in research from patient and public perspectives:

Scoping review of current literature to identify studies relating to inclusive research, whose findings could be extrapolated beyond the individual study.
Two focus groups: with a PPIG; and with community leaders from four voluntary care organisations serving Roma, South Asian, Black, and socio-economically deprived populations of South Yorkshire to discuss their perspectives on ‘inclusive research’.

We consulted a variety of stakeholders in the design of the focus group/interview questions, including frontline practitioners, academics, and patients, and in the analysis stage, members of our research group (EL and JW)

Scoping review

A scoping review was undertaken to find and describe studies which identify transferable learning about doing research with under-served communities. The study design is based on Arksey and O′Malley’s Scoping Review Framework (11). It is reported according to Preferred Reporting Items for Systematic reviews and Meta-Analysis extension for Scoping Reviews (PRISMA-ScR) (12).

We will search for studies which are relevant to the UK context, which have sought to include underserved groups in research, and have findings with explicit transferable learning (ETL).

The search strategy was developed by KF and IH with input from the research team and carried out in Medline.

(Research adj3 (participat* or involve*))
(Underserved or "ethnic min*" or BAME or depriv*)
1 and 2
Cultur*
3 and 4

Titles were filtered by the researchers (KF, IH) independently. Studies were eliminated if titles indicated that they were not related to the process of research or not relevant to the UK context. The researchers then met to discuss discrepancies. Where agreement could not be reached, the study was included in the next stage.

Abstracts were reviewed for the remaining references, and eliminated if they were not applicable to the UK context and/or study specific with no explicit transferable learning (ETL). If this could not be determined by the abstract, the researchers referred to the full text.

Focus groups (setting and participants)

Focus groups were chosen to collect data as they are a well-accepted method in social science and the group process allows participants to identify and clarify their views (6). Potential participants were purposively sampled via a PPIG and community organisations serving ethnic minority and socio-economically deprived populations. They were contacted via email with a brief description of the research, and asked to contact the researcher (KF) if they would like to take part. They were then sent an information sheet with the opportunity to contact the researcher to ask questions, before returning a signed consent form.

The topic guide for focus group 1 (see appendix 1) was developed using the scoping literature review, NIHR’s INCLUDE (4) recommendations and insights, and stakeholder consultation.

Both focus groups were facilitated by KF. KF is a female post-doctoral Research Associate, with over 20 year’s experience of qualitative health research, including conducting focus groups and interviews. KF is white British, and a practising Muslim.

In the first focus group, 6 participants were recruited, with informed consent, from the PPIG. The participants were 2 men and 4 women, age between 40 and 75. 3 participants were White British, 1 Black African and 2 South Asian. All live in socio-economically deprived neighbourhoods (IMD index of multiple deprivation most deprived decile) .

A focus group lasting 75 minutes was conducted in a University building, which was easily accessible by both car and public transport. It was audio-recorded, transcribed verbatim, and then anonymised for analysis. KF took field notes to supplement the analysis.

Researchers (KF/JW/EL) undertook rapid thematic analysis (13) and created a template from the transcript to establish the key themes. This template was presented at the second focus group of community leaders. Template analysis involves the development of a coding ‘template’, which summarises themes identified by the researcher(s) as important in a data set, and organises them in a meaningful and useful manner (14).

For the second focus group, 4 community leaders were recruited from 4 community organisations, to represent a variety of underserved communities (Roma, South Asian, Black, and socio-economically deprived). The aims of the research were discussed with the participants when inviting them to the focus group. All who were invited, agreed to take part. The participants were 3 women and 1 man, ranging from age 40–70, and their ethnic backgrounds were Roma, South Asian, Black and White British.

KF had previously established professional relationships with these participants. The focus group took place online, as this was preference of the community leaders. The researcher (KF) and the participants were the only people in the meetings. One community leader was unable to attend on the day so was interviewed in a separate video call, following the same format. The focus group was 69 minutes long, and the interview was 40 minutes long. KF took field notes to supplement the analysis.

Community leaders were asked about social and cultural issues relating to their communities, and specific examples were drawn from the first focus group, with regard to perceptions of research, and barriers and facilitators to getting involved. Participants were also asked how academics and clinicians may be able to work with community groups to increase participation.

Three researchers (KF, JW, IH) conducting rapid thematic analysis of the focus group, further developed the template, which was then refined with the main research team (KF, CM, EL).

KF continually checked her understanding of what was being said in the focus groups with the participants, which was decided as preferable to sharing the transcript of the focus group afterwards, which would have been extremely time consuming for the attendees to read through.

The focus groups did not aim to reach data saturation, but to gather enough data from a variety of perspectives to provide conceptual depth, alongside the scoping review.

Analysis- an iterative triangulation of source data

Data extracted from papers identified in the literature review were thematically analysed (14) by two researchers (KF and IL).

Focus groups and the interview were analysed using Template Analysis (13) which involves developing a coding template, which is then applied and revised. The template was derived from discussions with clinicians in the research team, around the barriers and facilitators to involvement in research.

The template was then further developed from the 2nd focus group. Service level motivators were added in based on discussions with clinicians in the research team (see Fig. 1).

Figure 1 – Template Analysis

The focus groups and interview were then analysed according to this template. The final model was presented to the DEPPIG, who confirmed their views were adequately represented and the model made sense to them.

Scoping Review

Altogether, the literature search identified 275 studies. Manually screening these studies for eligibility by title resulted in 97 studies. Abstracts for these 97 studies were then screened, excluding studies which were not relevant to the UK context, study specific or review with ETL, or not related to the research process. If this information was unavailable in the abstract, the full paper was reviewed. 5 studies were included in the scoping review. The study selection process is depicted in the PRISMA flowchart (Fig. 1).

Figure 2 – PRISMA diagram

An additional study by Subica (9) was added which was not identified in the review, as its focus was health inequality rather than research. However, the researchers felt the concepts presented provided a useful theoretical framework by which to understand our fundings.

Table 2 below summarises each of the studies included in the analysis.

The papers identified in the literature review were thematically analysed by 2 researchers (KF and IL). We found that the themes could be related to the three broad themes in the Subica’s paper (2022): cultural modes, institutions and lands, with an additional category of ‘solutions’ (see Appendix 2).

Our findings from the scoping review were clustered around the meta-themes of society and institution, showing tensions between these, and the importance of trust and understanding. Research happens within a wider social context. This context will influence the research process, and the research process cannot be understood without reference to the wider social context. Historical and societal issues will influence communities and therefore how individuals act. Institutions and their relationship with communities will be influenced by these same issues, and will influence how researchers act.

Focus group study

Figure 2 shows how the themes were developed by KF and IH. The three elements of cultural trauma (9) are shown below in the photo on the pink post-it notes. Themes from the other papers are shown on the orange post it notes. We then took the themes from our template analysis (shown on the small square post-it notes) and arranged them with or between related themes from the literature review. This process started to form a picture. There was a cluster of themes between cultural modes and institutions, indicating that the interaction between these two elements is important. Other themes formed a circle around them, indicating factors that were influential in creating this interaction, bringing us to the final model. Where these are presented in the egg-shaped diagram in Fig. 3, the top half of the egg contains factors relating to institutions, and the bottom half shows factors related to communities.

Figure 3 – triangulating the source data

A detailed thematic analysis of the focus groups was then carried out according to this final model, using NVIVO software. This resulting in deepening our understanding of the relationship between themes, which is presented in the model below.

Figure 4 – The process of research involvement in underserved communities.

Trust and Understanding

Values and cultural Competence

Our findings suggest that values and cultural competence are crucial to enabling inclusive research., This was both true at a larger societal scale, and a more local and project specific level. At a larger scale for example, the need for decolonising of the curriculum was mentioned, reflecting the feeling that contributions from non-white academics, and other ways of knowing or cultural interpretations of health had been removed from our understanding of many subjects taught today:

“All the contributions from those previous civilisations, they have contributed to what we know as knowledge today…So people like, different people, so everyone can see that their ancestors did something. It gives them confidence that we too, we can” (PPI contributor - PPIC)

An observation was made in both focus groups that research teams are predominantly white and middle class. Where those being researched are from socio-economically deprived or ethnic minority backgrounds, this may reinforce established power dynamics. Diversifying research teams was seen as desirable, but it was acknowledged that people from underserved communities may be less likely to establish academic careers, creating a circular problem:

“if a community member doesn’t feel that they can go to university, or that that’s even an option for them, the last thing is… I don’t see that link between them contributing to research” (Community Leader- CL)

Engaging with community leaders for research recruitment was suggested as a solution to overcome this issue.

However, the community leaders themselves recognised the limitations of this approach from their perspective, and the difficulties this can cause for community organisations:

“it is very difficult for us to keep being asked to participate […] it’s just like, oh, can you get us so and so, can you get us so and so, can you get so and so? We’ll give you a little budget for it, and that’s it. And then we go out. And it costs a lot more of our time” (CL)

It was recognised that ‘helicoptering in’ could be very damaging. Community leaders unanimously wanted ongoing relationships between community organisations and Universities, which were not only transactional:

“To make it a good process, there should be some kind of good partnership going”(CL)

In the longer term, capacity building in communities was suggested as a way of breaking the cycle and ensuring that people understand the role and value of health research:

“And that’s the education, it’s the awareness, it’s as much getting that out there to start that little pea on the roll until it becomes bigger and bigger and bigger and the information, but there’s so much information and education about services that needs to still happen” (PPIC)

The values of the researcher and research team, and their cultural competence, are essential in enabling inclusive research. The first step in this process is to have researchers who genuinely see that engaging collaboratively with communities can enhance the research process:

“So it’s just this kind of how can we see people as humans that have the capacity to find the solutions and offer solutions for a lot of the things that are the problems? They might not have the confidence, they might not have the resources or the skills really to… But they know what they need and they just need a little bit of scaffolding and support to get there” (CL)

This involves an awareness of the historical and cultural issues relating to specific communities. This awareness is necessary for understanding how certain elements of the research process may be triggering for particular groups:

“What might look very innocent for us, and it is about respecting them, might trigger some trauma for them” (CL)

This awareness was seen as something that would result from extended engagement with communities, and would not be achieved in a one off training session:

“If we think of these things as an event as opposed to a process, we’ve got it wrong. It’s not going to be… It’s taken years to get to the point where we are, so we’re not going to turn the ship around overnight. So I think it is about continuing to make those networks, to make those connections, to make real the community partnerships that universities are attempting to do now. But not to take your eye off the ball and think, well, we’ve done that now.”(CL)

Historical and current social & community context

The significance of historical cultural factors was striking during the focus group with the PPIG. These are issues of race and class in general, which may have contributed to issues of stigma and ‘otherness’ that have embedded a culture in which willingness to participate in research is unlikely. In addition, community leaders spoke about specific scandals around research, such as the Tuskagee study in America involving black men, as being very much in the forefronts of people’s minds when they were asked to participate in health research:

“they’ve not been reassured that the current ethics and current standards make that kind of thing less likely to happen” (CL)

More general health injustices also had an ongoing influence over people’s response to research, even if they occurred in other countries:

“If we’re talking about in Slovakia, they still sterilise women, so of course there’s going to be a mistrust of doctors here in the UK. It’s not that far removed for them” (CL)

Practical issues such as lap top access, and literacy levels, also impact upon individual capacity to take part. However, more time was spent discussing more abstract concepts, such as valuing health and awareness of research. which was felt to be lacking or very basic:

“yes, there is an awareness of research but I think only what they see on the television and that’s people with the pipettes and putting things in test tubes” (PPIC)

Not only do communities need an awareness of research, but more specifically, how it may affect, and therefore relate to them:

“I think most people, I mean, if you talk to them about research, they probably think that research is not something that affects them. Like you say, it’s like doctors and, you know, people who are educated, that’s something they’ll do, so it’s nothing got to do with them. So they won’t really be interested or want to join in” (PPIC)

Personal motivations

The factors described above will influence people’s responses to research invitations. During the focus group with the PPIG, we explored what factors had motivated them to become involved in research. Most stated that they valued the opportunity to improve services, and understood that the patient perspective was necessary in addition to the expertise of the researchers:

“That expertise, we public and members of the public, our common knowledge enhances their expertise. And if that common knowledge is not there from our perspective, that expertise is limited.” (PPIC)

Contributing in this way gave them a feeling of doing something to improve society in general:

“I just thought if I could make one tiny, tiny, tiny bit of difference, then, you know, I’d feel better” (PPIC)

Research priorities, design and recruitment

The values and cultural competence of the research team was seen as manifesting in the research process. The PPIG, who are experienced in engaging with researchers, talked about knowing when they were part of a ‘tick box exercise’ as opposed to when the engagement was genuine.

There was a tension between valuing lived experience, and the risk of re-traumatising people through the discussion of difficult life events:

“Increasingly, I’m not approaching the people we work with, to say, share your lived experience, because it’s just I’ve seen it re-traumatise.” (CL)

Awareness of the language needs of the people you want to involve in research is essential, including literacy levels and different forms of communication. It was suggested that researchers need to be more creative in the way they undertake the information and consent process around research, relying less on technology, and more of traditional forms of communication, approaching communities in their own areas and environments:

“the people that you want really are not going to sit checking their emails. It’s more conversations, the traditional forms of communication that we need to fall back on.” (PPIC)

A key part of moving away from the ‘helicoptering in’ approach, was to ensure that people participating in research had feedback regarding the study findings, and impact of their input on the research process:

“I don’t think people would mind if they didn’t go ahead or there were some problems. But as long as they got feedback so they feel appreciated, they feel that next time they want to do more to help, be involved”. (PPIC)

Long term relationships with communities were seen as the ideal model, in which this would happen naturally:

“if you’re doing this kind of research, you’re going to have to come back to the community and it should be an iterative process. And that isn’t always the model. And I understand it’s resources and time and time is currency. However, I do feel that when you invest, and if you’re really committed into finding and gathering quality data, then you need to invest that time in trying to get an understanding of the community.” (CL)

There was a more general message coming through, that the necessary actions would come from a mind-set which genuinely valued and respected people’s experience:

“no matter who you come across in life, even the guys that live on the street, when you interact with that person, you enrich one another consciously and unconsciously. You learn from that person, that person learns from you. Whether you accept it or not, consciously and unconsciously.” (PPIC)

Reimbursement of community member’s time was problematic. Community leaders and PPI members noted issues with delays in reimbursement, and the limitations of offering vouchers, which have negative connotations within some communities, such as being associated with being in need, or on a low income. These issues cause inconvenience and undermine the relationship between researchers and communities:

“no-one should have to wait six to eight weeks to be paid for something. And that’s what we always say, well, because of the paperwork or… But that’s not fair, we wouldn’t wait six to eight weeks to be paid on a salary, so why should we allow freelancers or community connectors or organisations, expect them to do that?” (CL)

While paying community organisations for their input was recognised as important, the amount given was often insufficient to cover the actual time and resources of the community group in engaging with the research. Community leaders made it clear that any genuine engagement means involvement from the earliest stages, and in on ongoing relationship:

“We’d like to be part of shaping and implementing as well and be part of… To make it a good process, there should be some kind of good partnership going on with the university and communities” (CL)

Summary of Findings

The ability for research to be inclusive depends upon trust between academic & health institutions and the communities that research hopes to engage. Due to wider socio-political factors - current and historical - trust cannot be assumed. Along with more practical considerations, these factors will influence personal motivations to be involved with research. Researchers need to be aware of these broader influences and engage with communities of interest at an early stage, including sharing power and influence over research prioritisation.

Utilising participatory methodologies demonstrates a commitment to inclusive study design from the outset. It is also essential to embed PPI which represents and includes those from underserved communities throughout the research cycle, and strategies need to be in place to ensure this happens in a genuine way rather than a ‘tick-box exercise’. The barriers to involvement in research by people from underserved communities that we found in our focus groups support those present in studies identified in our scoping review, particularly in Bonevski et al’s systematic review (18). Further, we found that the socio-cultural context was extremely influential in how particular groups may respond to research, and that it is important that researchers be aware of this. Similarly, Rosas and Stafford (15) emphasised the importance of understanding underlying mechanisms, and Farooqi et al (17) emphasised the importance of cultural competence of research teams, in addition to the more practical strategies needed. Our findings also suggested that the predominantly ‘white’ nature of research teams was itself a barrier to inclusive research, a problem described by Rai et al (16) as ‘methodological whiteness’.

Taken as a whole, our findings emphasise the importance of seeing the research process within a wider context, and we found ‘cultural trauma’ to be a useful framework for understanding the issue. Similarly, Asare (14) attempted to understand the issue in relation to social determinants on health (SDH). While SDH overlaps with the construct of ‘cultural trauma’, SDH is more focused on the current situation of minority groups, whereas cultural trauma describes the mechanisms of the process. Cultural trauma suggests damage to three health-protective cultural resources: cultural modes, institutions, and lands, as resulting in ‘cultural trauma’, an underlying cause of health inequalities (9). In this paper, we have demonstrated how this can be further applied to under-representation of certain groups in health research, by using the model as a framework by which to understand the findings of both our scoping review and focus groups. This enables us to see the circular impact created by under-representation of underserved groups in research, which further exacerbates health inequalities. The concept of cultural trauma helps to frame the under-representation of certain groups in research in relation to broader societal issues, without which it cannot be properly understood.

Strengths and limitations

The scoping review focused on peer-reviewed literature, whereas reflection on public engagement in research may also be found in websites and reports. We did not measure the quality of the individual studies. A wider review, including grey literature, and potentially collecting first hand data from researchers engaged in this work, would be a valuable future contribution to the field.

In the focus groups we engaged directly with people from socio-economically deprived areas, and from a variety of ethnic backgrounds. We also engaged with community leaders who had a wider view of the relevant issues. Triangulation of these findings with the relevant literature further strengthened this study.

This study was undertaken in a single urban setting, which makes a contribution to a growing body of literature in this area. However, we need to acknowledge that those who participated are likely to be among the most literate and health aware within their communities.

The lead researcher (KF) who facilitated the focus groups, is well known to the PPIG (and present at most of their meetings), and this may have influenced the responses they felt able to give. However, the group has an established ethos of challenging the idea but not the person, and the group appeared comfortable with disagreeing with her. This relationship may also have influenced the data as some things may have been implicitly assumed and so not verbalised.

Lack of representation in health research is part of wider societal inequity but there are actions that researchers can take to improve inclusivity in health research, thereby improving the quality of data and making evidence-based practise more accurate and valuable within all communities. This could contribute significantly to the reduction of health inequalities.

Whilst the ‘Include’ Roadmap (7) provides a good structure for an inclusive research process, prolonged engagement between academic institutions and communities over time and across multiple research projects, and individual researcher reflexivity with respect to differential power and cultural competencies are also crucial to widening participation in research.

Study data collection is the end point of a long process of prioritisation, design and funding procurement, and change needs to occur at all points in that process for real change to happen. If the organisations which currently ‘own’ research, wish research to be representative of the UK population, those organisations need to be willing to disrupt their philosophies and processes.

Patient and Public Involvement (PPI)

United Kingdom (UK)

Patient and Public Involvement Group (PPIG)

National Institute for Health Research (NIHR)

Preferred Reporting Items for Systematic reviews and Meta-Analysis extension for Scoping Reviews (PRISMA-ScR)

Patient and Public Contributor (PPIC)

Community Leader (CL)

Social determinants of health (SDH)

Ethics approval and consent to participant: Project approved by University of Sheffield Medical School Ethics Committee on 19th May 2021.

Consent for publications: The consent form approved as part of the above process including consent for anonymised quotations to be used in publications.

Availability of data and materials (scoping review): The datasets used and analysed during the current study are available from the corresponding author on reasonable request.

Availability of data and materials (qualitative focus groups): The datasets used and analysed during the current study are not available, as consent was not given by participants for sharing data beyond the research team.

Competing interests: The lead author (KF) and other authors have ongoing professional relationships with the study participants (non-financial). KF leads the PPIG, and collaborates with the community leaders on research studies.

Funding: This study was funding by the National Institute for Health Research Yorkshire and Humber Clinical Research Network.

Authors contributions: KF and CM designed the study. KF selected studies for inclusion in the scoping review, carried out the focus groups, and led the analysis process. IH carried out the literature searches, selected studies for inclusion in the scoping review, and was involved in the analysis process. HA assisted with scoping review analysis. EL and JH were involved in the focus group analysis process. JR was involved in reviewing and writing up the study. CM was the lead applicant on the study and involved in reviewing and writing up the study.

Acknowledgements: We would like to acknowledge the patient and public contributors, and community leaders, who took part in this study and play a key role in our work. We are withholding names due to confidentiality.

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Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ 372:n71. 2021. doi: 10.1136/bmj.n71
Braun, V., & Clarke, V. Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. 2006. doi.org/10.1191/1478088706qp063oa
Brooks J, McCluskey S, Turley E, King N. The Utility of Template Analysis in Qualitative Psychology Research. Qual Res Psychol. Apr 3;12(2):202-222. 2015: doi: 10.1080/14780887.2014.955224. Epub 2014 Sep 2. PMID: 27499705; PMCID: PMC4960514.
Asare M, Flannery M, Kamen C, editors. Social determinants of health: a framework for studying cancer health disparities and minority participation in research. Oncol Nurs Forum. 2;44(1):20-23. 2017. doi: 10.1188/17.ONF.20-23.
Rosas L and Stafford R. Practical research strategies for reducing social and racial/ethnic disparities in obesity. International Journal of Obesity Supplements. 2012;2(S1):S16.
Rai T, Hinton L, McManus RJ, Pope C. What would it take to meaningfully attend to ethnicity and race in health research? Learning from a trial intervention development study. Sociology of Health & Illness. 2022;44:57-72.
Farooqi A, Jutlla K., Raghavan R. et al. Developing a toolkit for increasing the participation of black, Asian and minority ethnic communities in health and social care research. BMC Med Res Methodol 22, 17. 2022. https://doi.org/10.1186/s12874-021-01489-2
Bonevski B, Randell M, Paul C, Chapman K, Twyman L, Bryant J, et al. Reaching the hard-to-reach: a systematic review of strategies for improving health and medical research with socially disadvantaged groups. BMC medical research methodology. 2014;14:42.

Table 1 Summary of included papers

Paper	Date	Country	Methods	Population	Summary
Social Determinants of Health: A Framework for Studying Cancer Health Disparities and Minority Participation in Research (15)	2017	US	Narrative review	Minority patients	Discusses the concept of social determinants of health (SDH) framework (health and education, the built environment and social and community life) as an explanation for minority patients being less likely to partake in cancer research.
Practical Research Strategies for Reducing Social and Racial/Ethnic Disparities in Obesity.(16)	2012	US	Narrative literature review	Racial/ethnic minorities and socio-economically disadvantaged populations	Discusses how to engage people from ethnic minority and socio-economically disadvantaged groups in health research, and focusses on the importance of understanding underlying mechanisms, as a building block for addressing the issue.
Cultural trauma as a fundamental cause of health inequalities (9)	2022	US	Narrative literature review	Minority cultural groups (e.g., indigenous, immigrant, refuge)	Proposed the idea of cultural trauma as a way to create disparities in health.
What would it take to meaningfully attend to ethnicity and race in health research? Learning from a trial intervention development study.(17)	2022	UK	Qualitative	Ethnically diverse	Conclusions are strongly informed by a theoretical understanding of issues around race ethnicity, for example using the phrase, ‘methodological whiteness’ to describe research processes which treat non-white people as ‘other’.
Developing a toolkit for increasing the participation of black, Asian and minority ethnic communities in health and social care research.(18)	2022	UK	Development of the toolkit (an iterative process including literature review, feedback from focus groups (including researchers and BAME community members) and further workshops and communication with participants to review the draft and final versions.	Black, Asian and Minority Ethnic (BAME)	Created a toolkit to help researchers maximise BAME recruitment to health research: The final toolkit recommendations were considering the communities which the research needs to involve; effective PPI; effective recruitment; cultural competence of research procedures; and effective feedback
Reaching the hard-to-reach: a systematic review of strategies for improving health and medical research with socially disadvantaged groups (19)	2014	US, UK, Australia, Canada, Europe (Russia, Estonia, Germany), New Zealand, US-led in Mexico,	Systematic review with narrative synthesis of data.	Disadvantaged groups (socially, culturally or financially disadvantaged compared to the majority of society).	Identified barriers to involvement in health research for socio-economically disadvantaged groups, and strategies to overcome these. Barriers: mistrust of researchers from some communities; reliance on technology to collect data. Developed a set of strategies covering the entire research process from sampling to retention.

Competing interest reported. The lead author (KF) and other authors have ongoing professional relationships with the study participants (non-financial). KF leads the PPIG, and collaborates with the community leaders on research studies.

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Contextualising and challenging under-representation in research in light of cultural trauma: a scoping review and qualitative focus group study

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Scoping Review

Focus group study

Values and cultural Competence

Historical and current social & community context

Personal motivations

Research priorities, design and recruitment

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