Public health research has, like many disciplinary fields, had a complicated and dynamic relationship with the idea of Community-Led Research (CLR). As a field that has emerged largely from medical and scientific models, much research in this area has historically constructed and treated what we now call research ‘participants’ as subjects. However, public health is notable in its departure from these problematic constitutions in its often-interdisciplinary machinations. Research in the area has variously incorporated understandings from medicine and science of course, but also from sociology, anthropology, human geography and other social sciences. As such, public health research represents a continually changing discipline that seeks to recognise and include the importance of emotions, motivations and impacts of humans on health actions, outcomes and experiences.

From this disciplinary complexity it becomes clear that CLR may be present in some studies and absent from others, as well as representing a range of different iterations on that continuum. Research that is understood as involving community consultation has been variously labelled in this field as Community-Based Participatory Research (CBPR), Patient and Public Involvement (PPI) and others. These various approaches represent a contemporary emphasis on meaningfully involving individuals from research target communities in each step of the research process – from defining the research topic to disseminating the results (Minkler & Wallerstein, 2008). Over the past ten years, this inclusion of community members in research methodologies has become particularly popular in research that focuses on underserved and minority population groups. Jacquez and colleagues suggest that CLR is particularly relevant to these groups as they produce culturally relevant, connected knowledge that is more readily translated into action and change rather than knowledge from academic theory or outsiders. Without the voices of these communities, research can miss the contextual input necessary to represent the unique experiences of those within. In addition, community group members that are able to take part in the process are more likely to feel a sense of empowerment as they are able to exert control over an aspect that affects their lives (Minkler & Wallerstein, 2008).

One such minority group that has traditionally been excluded from this process and its benefits is children and young people (Langhout & Thomas, 2010). While these groups are often constructed as different, they ultimately experience similar construction in research processes if they are aged under 18 years (Groundwater-Smith, Dockett & Bottrel, 2015). Their exclusion from research is often ‘on the basis of inferiority, dependence and vulnerability’ (Velardo & Drummond, 2017, p. 7), including researchers assuming their cognitive capacities to be inadequate to understand research procedures (Jacquez et al. 2013). When this category of children or young people is combined with ‘sensitive topics’, this exclusion is exacerbated by structural barriers that emerge from constructions of young people as inherently ‘innocent’ (Robinson, 2008) and therefore requiring protection from various configurations of meaning. Through constructing children’s dialogue in research as ‘risky’ and therefore mandating additional and specific regulation, the ease of involving them in research is reduced and, as such, they are more often excluded from the research design and collaboration phases. This comes at great cost for children and young people, as their research citizenship and voice are revoked, despite the noted and international right of children to be listened to and have their views respected (United Nations Office of the High Commissioner for Human Rights, 1990). Researchers and decision-makers should therefore listen and give due weight to the voices of children on matters that affect them (Arunkumar et al., 2018), and be cognisant of the ways that young people are immersed within their local neighbourhoods and communities on a daily basis. Children and young people deserve to be engaged in the planning processes, considering that they may be particularly vulnerable to place-specific effects on health in a variety of ways (Bogar et al., 2018). However, human research ethics committees make judgements, usually without any consultation with young people, about what is appropriate to ask children and young people about and engage them with – judgements that are often related to their age and connected hegemonic social and cultural constructions of ‘risk’. This is particularly the case in research that investigates ‘sensitive’ topics – especially those that complicate traditional constructions of children and young people as being innocent and in need of protection.

One of these intersections of meaning is in relation to sexuality and gender identity. As is seen in various policies, the social construction of ‘childhood innocence’, ‘operates to maintain adult-child binary power relationships and the heteronormative status quo’ (Robinson & Davies, 2008, p. 223). This is of course exceptionally problematic in research that is concerned with young people and their experiences of being marginalised through their lived gender identity or sexuality. As such, there is a notable dearth of research that investigates how this kind of research might meaningfully engage with young people in co-creating research initiatives in this area. Instead, it is likely that a multitude of researchers in this area face barriers to commencing such initiatives, as those that have faced diminished rights and resources in their communities – such as minority gender and sexuality youth – are more difficult to access through common research protocols, let alone CLR designs (Groundwater-Smith, et al., 2015).

Another element that is constructed as threatening childhood innocence, though less researched than panics around gender and sexuality, is that of self-harm and suicide. This is again linked to dominant constructions of young people as being at risk of ‘sensitive’ discussions, even if they self-identify as part of the community in question. Lakeman and Fitzgerald’s (2009b) international survey of ethics committee members found that 65 per cent expressed concerns that suicidal behaviours or feelings may be increased by participating in research on the matter. Researchers in this field often share these concerns, and consequently often put in place protocols such as clinical training in risk assessment, the monitoring of participant wellbeing during data collection, detailed warnings of potential distress within patient information sheets and debriefing and follow-up care (Biddle, et al., 2013). However, other research indicates that participation in research on this topic can be beneficial or therapeutic, rather than distressing. There are few studies that report on participant distress due to participation. This suggests that ethics committees can be paternalistic and ‘overprotective’ and lack an understanding of the perspectives and processes of the people involved (Biddle, et al., 2013; Lakeman & Fitzgerald, 2009a).

The project that we report on here is one that dealt with a confluence of these two ‘risky’ elements of research, investigating the intersection between youth, sexuality/gender identity and self-harm and suicide (for further details on this project, see McDermott, Hughes & Rawlings, 2018a; McDermott, Hughes & Rawlings, 2018b). Clearly, the combinations of meanings and constructions of discussions with youth as ‘risky’ in relation to sexuality, gender identity and self-harm and suicide, make not only community involvement and consultation, but CLR particularly difficult. Perhaps as an outcome of this, former research of youth involvement in research of this nature is scarce; however, broader research, such as that within this book, does clearly indicate that community involvement can meaningfully impact research conceptualisation, design, recruitment, dissemination and community satisfaction and relationships with researchers.

In light of this, we grappled with ways to meaningfully (rather than tokenistically) involve young people in the process of research with the knowledge that this involvement would benefit every stage of the research. We recognised the extensive benefits of this process not only to the research, but also to the young people, including possible increases in their awareness of their own democratic rights as citizens; positive impacts on the attachment to their local environments (Checkoway & Richards-Schuster, 2003; Matthews & Limb, 2010); opportunities for ‘mutual learning’ between young people and members of diverse communities; and the co-creation of healthier spaces and more liveable urban environments for people of all ages (Hohenemser & Marshall, 2002; O’Connor, 2013). These are only a few of the detailed benefits for youth in being involved in the formulation of research projects (for an extensive report on these benefits, see Arunkumar, et al., 2018; Jacquez, et al., 2013). This chapter reflects on some of the challenges that we faced in this process, but also reports on the processes, intentions and benefits that we enacted and encountered throughout. Through sharing some of the conceptual and logistical efforts that were expended by us as researchers, and by community members as expert consultants, in this chapter we hope to cast some light on how future initiatives in this field could collaborate with community members in practical ways.

​The project and community involvement

The limited evidence-base of projects around youth, sexuality, gender identity and self-harm and suicide makes it exceptionally difficult to develop suicide prevention policy, deliver appropriate and effective mental health services, and tailor interventions to prevent suicide for this particular group. In this project we recognised that the need for these outcomes could only be fulfilled with a community-informed – if not distinctly community-led – approach. The distinction between those two terms is important, and this chapter, nor the project that emerged, does not make a claim to suggest that it was community-led in its entirety. If it had been, the nexus of youth, sexuality, gender identity, self-harm and suicidality would have been an exceptionally prohibiting factor to receiving funding and ethical approval within current frameworks that operate in the health research field (Lakeman & Fitzgerald, 2009b). In light of these difficulties, this project took the approach that while the community may not have a distinct hand in designing the research questions or methodology, they could be actively involved in each stage of the research including the design of data collection questions, recruitment of participants, data analysis, the writing up of the research report and the dissemination of results to communities.

In light of these considerations, from its conception our research included plans to involve the community in two ways. First, to have a research management group to steer the project in a collaborative way, and include a community consultant as part of this group to contribute to every aspect of the project. This was enacted as a paid position, reflecting our beliefs that community consultants are experts, and our commitment to treat them as such. The community member was consulted at all stages of the conception, application, procedure and reporting of the research, and was a crucial consultant for determining various directions and actions of the project. Crucially, this person was a young LGBTIQ+ person who had experience of self-harming and suicidal ideation, with strong links to the LGBTIQ+ community. They often proceeded to consult with others in this community between meetings, producing an effective and collective consultation.

Second, once ethics for the project was approved, we partnered with a local LGBTQ+ youth group in the North West of England to create a Youth Advisory Group (YAG). The group would consist of young people who were in the target age range (under 25 years of age), were sexuality or gender diverse and had experienced self-harm or suicidal ideation. The group sent out an invitation to those they thought would be eligible and interested in participating via email, and asked them to express if they were interested in consulting the researchers. Seven people volunteered and formed the YAG, convened in an initial meeting on site at the youth group with one of the researchers. In this initial meeting we discussed the potential benefits and risks for participating in the YAG, the rationale for having a YAG, collaboratively negotiated general expectations of YAG members in terms of contributions, and explored the major themes and objectives of the research project. From there, the young people proposed that a closed (private) Facebook group was the best way of staying in contact, and this was subsequently created by one of the young people. The researchers contacted the YAG using this Facebook group to ask for comments or feedback on various aspects of the research process. Some YAG members were more active on this group than others, and involvement ebbed and flowed for each individual over time; however, the researchers would always receive at least one response to their enquiries. This method enabled members of the YAG to fluidly adjust their level of participation, depending on various factors, such as their comfort level, mental health, time commitments and interests or experiences – a crucial component in establishing positive youth-specific research consultancies (Arunkumar et al., 2018; Ergler, 2017). There were also three face-to-face meetings with the group over the course of the project.

Jacquez and colleagues (2013) suggest that academic investigators might be reluctant to partner with young people due to a concern that they will not be able to understand empirical concepts or have adequate cognitive skills. However, they argue that children and young people have the ‘cognitive capacity to understand basic research concepts when the material is presented in a contextually appropriate way’ (Jacquez, et al., 2013, p. 177). As such, there is a requirement for research teams to actively plan and provide structure and training for any youth partners to create a research pedagogy for the project. In all meetings and interactions online, the young people in the advisory group were given opportunities to ask questions, explain hesitations and contribute their expert knowledge. The successful establishment of an environment where these interactions were possible was in part due to the facilitation of the group, undertaken by one of the researchers who was also an experienced youth educator.

Youth expertise and contributions to the YAG were acknowledged in a number of ways. First, the partnering LGBTIQ+ youth group that arranged consultation with their members, as well as a site for meetings, were paid a consultancy/collaboration fee. This fee allowed the organisation to continue with and extend their vital work with the community – work that many participants indicated was crucial to their mental, social and overall wellbeing. In addition, YAG members were provided with consultancy fees to reflect acknowledgement of their expertise and value to the project. Finally, some members of the YAG requested (and were provided with) references for jobs and other positions that spoke to their positions as advisory group members on a major national research project. In each of these initiatives we attempted to ensure that the YAG members were empowered and felt valued in their contributions. While we did not collect individual reflections on the experiences of the young people in the YAG, the majority of the members provided active contributions over the two-year period of the research project, and these contributions added to the overwhelming success of the research project.

In this chapter, we focus specifically on how the YAG contributed to the second of two stages of this mixed method research. The first stage involved undertaking 30 qualitative interviews (15 online, 15 face-to-face) to establish a deep understanding of the participants’ experiences. The second stage utilised the garnered data to develop an online questionnaire that was eventually completed by almost 1000 participants around England. In both stages the YAG was a crucial mediator of research procedures, and their interventions meaningfully altered the processes of the research; however, this was particularly the case in the design of the youth survey. While semi-structured interview questions were changed slightly due to consultation with the YAG, the survey underwent more extensive changes to language choices and response options.

​Developing a youth survey: meaningful consultations with the Youth Advisory Group

Consultation with members of the YAG was convened to pilot and provide feedback on the online questionnaire (youth survey) prior to its release. This was achieved through conducting individual and group interviews both online and in person with four group members after a final draft of the youth survey was completed. Specifically, we asked the members to ‘talk out loud’ their thought processes as they interpreted and answered the survey questions. This assisted us to identify linguistic, cultural, structural and logical problems with the various questions (Addington-Hall, 2007).

Those in the YAG were asked if they would like to contribute to the development of the survey. Each participant was informed about the nature of the study as well as which stage the project was at, clarifying the aims of the interview. They were each asked to ‘think aloud’ as they completed the survey as they would in any other context. This process required each volunteer to read the question aloud, and then continue to speak about what they thought it meant and any problems that they had encountered when deciding how to answer. Prior to commencing, the researcher who had previously worked with the YAG and was therefore known to them demonstrated what this looked like and encouraged participants to also think/talk about their comprehension of the question, the response options that were present, the language, look, feel and length of the survey and the effort involved in responding. The researcher also asked probing, spontaneous questions to the participants throughout this process that related to verbal and non-verbal cues of the participant such as hesitations, confusion or uncertainty (Murtagh, Addington-Hall & Higginson, 2007). This process provided significant and valuable feedback for the survey.

Two of the young people from the YAG wished to take part in this process but were unable to meet face-to-face for various reasons. At their request, we organised to send them the survey within the software as it would be seen by future participants. We asked them again to make comments on the question inclusion, wording and language used, as well as the responses and whether they felt anything could be improved. We also asked for comments from them around the look and feel of the survey as well as its length. Although this was not necessarily in the ‘read aloud’ format, it gave us insight into what it might look for young people to complete the survey in ‘real time’ without a researcher in the room with them. In this way, we established two environments for the pre-testing of the survey including four pilot testers: Lucy (18, cisgender woman, lesbian, White British), Dylan (17, transgender man, unsure, White British), Anthony (18, transgender man, straight, White British) and Rebecca (18, cisgender woman, bisexual, White British).

As our research approach sought to prioritise subjugated knowledge and marginalised voices, the perspective of these volunteers was of critical concern. Their feedback was both positive and negative; they reflected that they felt motivated to complete the survey, that they liked the design and functionality of the survey, and that the vast majority of responses for multiple choice questions matched their experiences with self-harm, suicidal feelings and help seeking. This affirmed many of the choices that we made around what options to include, especially after our adaptations from previous studies of self-harm and suicidal reasons (Hawton, Rodham & Evans, 2006). Consulting with young people enabled us to understand survey items where young people may be more likely to drop out of the survey due to incomprehension or a lack of suitable responses.

After receiving the feedback of the volunteers, the research team reviewed the items highlighted in interviews and examined the potential for alterations. In particular, we focused on items that could potentially lead to response error, either through difficulties with comprehension or a lack of applicable answers for participants to select, making them feel corralled into particular responses that may not apply to them.

These interviews led to changes in 14 questions in the survey which had, in total, 49 response items. The changes related to the provision of relevant answer options, the language used, the structure/ procedure of questions and some of the information given in blurb/introduction sections. Crucially, the young people altered questions about gender identity and sexuality – survey questions that are notoriously difficult to design (McDermott & Rawlings, 2015), particularly amongst young people who are less likely to ascribe to traditionally accepted/endorsed labels (McDermott, et al., 2013). While the researchers had gathered ‘best practice’ information on how to ask about gender identity, and done extensive research on how questions had been previously asked in similar studies, this did not match with the preferences of the YAG volunteers. For example, a question that asked explicitly ‘what is your gender identity’ initially included four options – and with the feedback of Anthony, it was changed to have five. See below for the original and amended question.

 

In commenting on the need for this change, Anthony contributed:

The research team discussed this feedback and recognised that including particular categories does lead to a hierarchy of gender identity categories. We considered including, as Anthony suggested, both ‘gender fluid’ and ‘both’; however, we felt that non-binary and ‘other’ provided enough options for those who might wish to identify as both male and female in a static way. However, we did feel that it was likely that many participants may identify as gender fluid, and to include this option would demonstrate a greater understanding from the project.

Another gender identity question was also impacted by this process. This item was utilised to establish whether participants were trans or had diverse gender identities.

 

Dylan, who identified as transgender, suggested that the question could cause trans participants distress when they were asked to identify with their birth sex. Although we initially followed guidelines for this question from Mitchell and Howarth (2009), his contributions highlighted that young participants may have different experiences of this question being asked. Those in the YAG understood sex and gender as less fixed, more fluid and more nuanced than the (older) literature suggested. This was particularly the case for questions around sexual orientation and gender identity, where the participants provided significant and helpful input. The research team agreed that there was no direct need to ask this question in its original format; rather, the emendation achieved the same result (identifying trans or non-binary participants) without causing any distress or burden for the participant.

Issues were also noted about questions that related to sexual attractions. In the below item, volunteers identified problems with the fixity of biologically determined and binary, dichotomous categories of ‘sex’.

 

Lucy reflected that although she identified as a lesbian, she had a trans girlfriend, and this question confused her as it asked her to identify the sex (biologically determined) that she is attracted to. Dylan encountered difficulties answering this question because he was still unsure about his attractions, but was also confronted by the use of ‘sex’ for the same reasons as Lucy. Dylan suggested the addition of ‘gender’ and changing from ‘only’ to ‘mostly’ to enable broader selection categories. Anthony, in his online contribution, wrote:

Again, this captures the complexity and fluidity of young people’s lived realities, their rejection of what many construct as simple or straightforward questions, and the incongruence of former measures to their lives – all aspects that might not have been captured without this consultation process. This question was initially adapted from Hillier and colleagues’ (2010) ground-breaking study of young same-sex attracted people; however, the emendations to the question, drawn from young people’s accounts, make it potentially more valid for participants in this study. Responses were initially amended to include sex/gender, which Anthony rejected through explaining:

As such, we altered the response further to include ‘gender’ only, and ‘mostly’ to enable recognition of fluidity and non-binary identifications.

Other questions that the young people requested alterations to were around religion, social class, experiences of abuse, hiding of sexuality and/or gender identity, reasons for not seeking help, people that participants might seek help from and the level of helpfulness from these sources. Some of these ended up being crucial changes in terms of final response rates. For example, one item (below) asked about participants’ non-disclosure of their sexuality and/or gender identity during periods of time when they were self-harming or experiencing suicidal feelings.

 

First, Dylan suggested that he did not know to what time period this was referring – if it was related specifically to moments of self-harm or suicidal moments, or to general time periods where self-harm and suicidal feelings were occurring. Wording was altered to try to express more clearly that the question sought to know about periods of time rather than self-harm and suicidal moments. In addition, this question, or rather the required response format, was highlighted as problematic by Anthony. Specifically, he contended that the ‘choose up to four options’ format was difficult for him to fulfil as he identified that there were six options that he wanted to choose but couldn’t. Lucy and Dylan also had issues with only selecting four responses for this question. As such, the research team resolved to relinquish this restriction and allow participants to select as many options as were relevant to them. The reason that this constraint was initially included, and remains on some other items, was to ensure that data produced was valid, and that participants did not necessarily choose ‘easily’ but were compelled to choose their responses carefully. Anthony, however, demonstrated that this restriction was not necessarily causing him to think more about his answers:

This question and the others where ‘select four’ is the instruction had ‘randomisation’ of answers, ensuring that the ‘top four’ options (and indeed the rest) were always in a different order/format. Randomisation was chosen to ensure validity of responses; however, enabling participants in this question to ‘select all’ was adopted as an amendment due to the YAG consultation.

In terms of results, this was a crucial change. Of the 752 participants that eventually responded to the question, they indicated 3455 data points, equating to an average of 4.6 selections per participant. Some participants indicated that many more than four options were relevant to them, indicating the complexity of young people’s lives and decisions about disclosure. This change, however, did not result in a majority of young people choosing all of the options. What it did produce was a freedom for participants, and consequently a more reliable and reflective dataset.

​Survey outcomes: impacts of the Youth Advisory Group

Working with an exceptionally marginalised group meant that establishing a large sample size for the survey would always be a difficult task. Part of the rationale for including and working closely with the YAG, including in their expertise for question design, was to enable the questionnaire/survey to be accessible, understandable and comfortable for participants to complete, thus reducing the typical ‘drop out’ of participants that naturally occurs during survey participation. From the 835 eligible participants that commenced the survey, only 46 did not complete the final item, meaning that there was a drop-out rate of only 5.5 percent. The quantity of participants in this stage was also a crucial component of this research and while it was determined that a statistically powerful sample size would be 400 participants, the final number of eligible participants ‘counted’ in the data was 789 young people. While we have no direct evidence that the YAG assisted with both of these outcomes, it is clear that the overwhelming majority of participants were motivated, felt represented and that they were able to answer each item comfortably. In terms of recruitment, the YAG again assisted in publicising the research in their online and offline social networks. Although we cannot provide statistics on how participants came to take part in the research, it seemed that personal knowledge of the project and investment in an invitation yielded more participants than a general ‘mention’ of the project. Exposure of the survey to great numbers was not everything – it was also the type of exposure and where this came from, as well as the experience of taking the survey – an experience that was positively impacted by the survey’s construction and inclusive practices. Some of this can be illustrated in the final survey item, where participants were given an opportunity to openly answer the question ‘Is there anything else that you want to tell us?’. Some participants took the time to reflect on their positive experiences undertaking the questionnaire, for example:

These comments speak strongly to the resistance of many around discussing ‘sensitive topics’ like sexuality, gender identity and self-harm and suicide with young people. Throughout the research project, our experience indicated that the young people benefited from talking about their experiences, feelings and thoughts, and had rarely been given such an opportunity to do so before. That a survey could make someone ‘feel better’, or ‘be helpful to me’, or make ‘me feel included’, or produce ‘insight into myself’, is a compelling reason for future research with, by and for young people experiencing distress.

Some participants also provided further suggestions for improvement in questions on sexuality and gender identity:

These comments further illustrate the power and potential of meaningful, extensive and ongoing consultations with members of the community who are directly affected by research processes and outcomes. If we were to rewrite and re-administer the survey, these voices would be listened to, and these questions altered. As it is, these contributions have impacted our research projects and approaches since.

​Conclusion

While the above may read as a simple piloting process, we argue that the community involvement of this process was both transformative to the research, and that this stage of the research would not have been successful without the connected work that was done with, by and for the community within our research design. The interviews with YAG volunteers formed just one component of this project, and were facilitated by four key factors. These included a long-term building of relationships between the researcher and the group; consistent recognition of the expertise and importance of the individuals involved, including remuneration for time and energy expended; a similar relationship built with their LGBTIQ+ youth group and its leadership; and ongoing conversations about all other elements of the research process and design.

Although we have reported here on only one (vital) element of how the YAG impacted on the data collection of the Queer Futures project, they had extensive other contributions throughout the two-year duration. This included informing recruitment strategies, advising how we could best get in contact with a dispersed, intersectional, sometimes disconnected, often distressed population; assisting with recruitment by sharing the research in their own networks; influencing interview questions language, order and structure in the first stage of the research; consulting on the design of the project website and name; consulting on the final report for youth and community; sharing the research report in their networks (disseminating results); and attending and contributing to the concluding symposium for the research which was a ‘coming together’ of the researchers, stakeholders and community groups.

Without those affected by the research question on board, it was unlikely that the research would be well taken up by the community, produce a positive experience for participants or achieve a breadth in communicating the results. Our approach with the YAG was to meaningfully include young people’s voices along the way in terms of project design (research questions, interview questions, procedures and survey measures) to make sure that the project was best serving the target group. In addition, YAG advice made it possible to improve recruitment, dissemination of results and the overall participant experience.

It is important to recognise that in the final report of the Queer Futures study, this extensive theoretical and practical work was only referenced in a short paragraph that detailed the presence of the YAG. While the report necessarily reduces the complexities of the study down to a more brief, digestible document, this section was particularly reduced. As such, we felt it necessary to contribute a more detailed and in-depth reflection on the importance of the community’s involvement in this project. While potentially this iteration of CLR was not as consistent or comprehensive as others that have occurred, the involvement of and consultation with LGBTIQ+ young people who had self-harmed or attempted suicide as an advisory group was crucial to its success. These contributions increased the comfort of research participants, improved the quality of research measures, and enabled a more diverse communication of research results. In addition, their inputs and investments into the project resulted in greater sharing within their networks, improving recruitment to the study. Each of these considerations is invaluable in a study that seeks to include a marginalised and hard-to-reach population that is often distrustful of research but actively seeking to make a positive contribution to their situation and community. In other words, the involvement of community members in this research was critical to its success, but also beneficial to participants in a multitude of ways. Our experience further demonstrates the argument that despite the difficulty of conceptualising possibilities for community involvement in ‘sensitive’ research, the efforts produce significant impacts throughout the research process. CLR in public health, and more specifically in research that includes minority, disadvantaged and at-risk populations, is crucial if research is to ultimately benefit the population that is included.

​Acknowledgements

The authors would like to thank all of the participants in the Queer Futures project, especially the community groups and individuals within the LGBTIQ+ community who shared their time, expertise and connections with the study.

​References