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*This project is underpinned by Baker and Beagan’s (2014) suggestion that research, policy and practice should ‘learn with’ LGBTI+ communities.

Nerilee Ceatha uses the pronouns she/her and is an alternate funded SPHeRE scholar with University College Dublin. Her mixed-methods PhD study aims to identify the protective factors that promote LGBTI+ youth wellbeing. This draws on her experience as a social worker, LGBTI+ researcher and member of the Oversight Committee for the Irish LGBTI+ National Youth Strategy.  The project has three study arms: a scoping review; quantitative analyses of Growing Up in Ireland, the Irish longitudinal study of children; and a qualitative project: the ‘LGBTI+ YuPP’ study. 

In this blog, Nerilee discusses the teams’ Study Protocol, published by HRB Open Research, for a scoping review with the potential to inform research, policy and practice with relevance for LGBTI+ youth, their families, communities and the professionals who work with them.

My PhD project seeks to explore how the experiences and identities of lesbian, gay, bisexual, transgender and intersex (LGBTI+) youth are influenced by protective factors that promote wellbeing. I have a long-standing interest in LGBTI+ wellbeing. Since the 1980s, research with sexual and gender minority populations has predominantly focused on vulnerability, with far less research attention on wellbeing. Curious about this research gap, in 2014, I conducted exploratory, qualitative research.

This study examined the wellbeing of sexual and gender minority people through their involvement in sporting, creative and social groups, set up by and for LGBTI+ communities. The themes of ‘connecting’, ‘mastering wellness’ and ‘making a difference’ challenge the dominant, conventional narrative and provide a counter to the often deficit-focused framing of LGBTI+ lives. Rather, the findings highlight the strengths within LGBTI+ communities which enhance wellbeing and potentially contribute to destigmatising mental health. 

A person centred approach to research

Research participation has been identified as both personally rewarding and providing a sense of making a worthwhile contribution, particularly if the findings are useful to others. This recognises that research is not merely about studying a topic but is also about what is important to those being studied. I have now presented to over 300 LGBTI+ people, almost as a form of community member-checking, seeking whether or not the research resonates and accords with people’s experiences.

My suggestion that there is a lot to ‘learn with’ LGBTI+ communities is often met with surprise; such is the dominance of the conventional narrative. This both saddens me and has increased my determination to disseminate this research. I have published through national and international conference poster and oral presentations, a magazine article in the Gay Community News, articles in the Journal of Research in Nursing and the International Journal of Environmental Research and Public Health, alongside a SAGE Research Methods Casestudy. I was delighted to have this study cited in the discussion paper #CopingWithCOVID: The Well-Being of LGBTIQ Adolescents and Youth published by Youth Voices Count.

Addressing an urgent need to address LGBTI+ youth wellbeing

Throughout the process of sharing the research, I sought feedback on future health research priorities. Again and again, LGBTI+ communities emphasised the urgent need to address youth wellbeing, due to mental health disparities. These concerns are reflected within the broader social context, culminating in the publication of the Irish LGBTI+ National Youth Strategy 2018-2020: LGBTI+ young people: visible, valued and included, as part of the Irish programme for government with three overarching goals:

1. Create a safe, supportive and inclusive environment for LGBTI+ young people
2. Improve the physical, mental and sexual health of LGBTI+ young people
3. Develop the research and data environment to better understand the lives of LGBTI+ young people

I sat on the Oversight Committee for the formation of this Strategy. This provided an invaluable opportunity to weave together the three strands of my practice, research and policy experience. The development of the Strategy was underpinned by the involvement of a Youth Advisory Group with their representation core to the membership of the Oversight Committee.

Through embedding their expertise by experience, in order to ‘learn with’ LGBTI+ youth, the policy-making process was strengthened. The Oversight Committee acknowledged the challenge posed by the limitations of the current research focus and the dominant, conventional narrative. This facilitated a critique of generalised approaches that may mistakenly reinforce an assumed trajectory of marginalisation and mental health vulnerabilities, with universal and automatic application to all sexual and gender minority youth.

It is noteworthy that such emphasis was placed on the importance of developing the research and data environment to ensure evidence-informed policy and practice. Goal 3 identifies a range of objectives which outline the priorities for LGBTI+ youth health research in the Irish context. My PhD project aligns with the following objectives:

15(f) Develop research into the factors that support positive mental health for LGBTI+ young people and ascertain how these positive factors can be replicated.

15(g) Explore Growing Up in Ireland Wave 3 data that captures sexual orientation and other relevant information (pp30-31).

The scoping review, as a first stage research process in my PhD, will locate the study within the literature to inform the future development of the project. A potential benefit of scoping reviews is that they can address topics considered important in the policy context.

Research integrity

My PhD training through the SPHeRE programme has emphasised the importance of research integrity. I completed a core module on systematic, scoping and qualitative syntheses and protocol development. This was complemented by my attending a workshop at the Social Work and Sexualities Conference in 2018 ‘Scoping Reviews as a Tool for Mapping Emerging Areas of Inquiry in Sexuality Research’. The scoping review was carefully chosen as the most appropriate with its capacity to collect a great quantity of different types of literature. This is particularly important when little is known or published about a topic area.

As the lead on the team collaborating on the scoping review, I was keen to publish the protocol to clearly outline the plan to conduct the review and predefine the background, rationale, objectives, methods, and reporting. While, it is recognised that it is good practice to publish a protocol, many platforms do not accept registration for scoping reviews.

Choosing openness, transparency and accessibility

HRB Open Research platform is one such platform that offers the opportunity to publish scoping review protocols in an open and accessible way. Publication of the protocol provided an opportunity for the study team to outline the six stages of the methodological framework and that the PRISMA Extension for Scoping Reviews (PRISMA-ScR) checklist will be used throughout the review process. We sought to publish the protocol to ensure transparency, mitigate researcher subjectivity and enhance the potential for replication.

This process provides context for operationalising constructs, terms and definitions using the Population – Concept – Construct criteria. This was particularly important for a scoping review with an LGBTI+ study population. Piloting and refining the criteria for the search strategy resulted in the inclusion of 67 LGBTI+ self-identifiers, and related terms. Operationalising constructs also had particular relevance for a review on wellbeing as this term is used ubiquitously, but is highly contested.

The revision process facilitated further clarification that our use of the term ‘wellbeing’ is holistic, informed by the World Health Organisation definition, and draws from the Ottawa Charter for Health Promotion. Mental health has been included as an integral aspect of the term ‘wellbeing’ in recognition that this is not binary, that anyone may experience compromised mental health, and that this  does not preclude wellbeing. The search strategy was submitted to Open Science Framework, a research repository to promote transparency and replicability.

A unique learning opportunity from the experiences and involvement of LGBTI+ youth

Our protocol outlines a plan to conduct the first scoping review of the peer reviewed, published literature on protective factors for LGBTI+ youth wellbeing. Given the extensive research focus on LGBTI+ mental health disparities, with specific attention given to youth mental health risk, this is surprising. Reviewer 1 noted: “The focus on protective factors is most welcome in a sea of literature focused on risk factors.” The scoping review will map the concepts, themes and types of available evidence within the existing national and international literature, including knowledge gaps. Reviewer 2 noted: “This review addresses an important gap in the literature.”

Stakeholder consultation is a key strength of this process and will be enhanced by the priority placed on public patient involvement (PPI) of LGBTI+ youth. It is anticipated that this will provide a unique opportunity to develop understandings of knowledge translation within LGBTI+ youth networks. Co-produced data analysis of the scooping review findings will provide a unique opportunity to ‘learn with’ LGBTI+ youth, with expertise by experience, and prioritise their involvement in the research process. Ethical approval has been granted from the UCD Humanities Research Ethics Committee for this consultation process.

On this basis, the study team believe the scoping review is timely, with the potential to make an important contribution to the literature, and to inform the future direction of policy, practice and research.

Interpretation and shared meanings

The research team are currently screening the data prior to charting the included studies. Once the results have been collated and summarised, the next step is to report the results. Stakeholder consultation strengthens the process and reporting of the results and enhances methodological rigour through seeking out the insights, theories, concepts and ideas of those with practice, research and policy knowledge or expertise.

The PPI component of this consultation will be via the LGBTI+ YuPP study: Young People’s Panels, Youth Perspectives and Priorities. This approach seeks to ‘learn with’ LGBTI+ youth and foreground the words, views, understandings and experiences of sexual minority, gender minority and intersex youth. This model assumes that young LGBTI+ people have nuanced understandings of their lived experience. However, to fully understand these processes, co-produced data analysis of the scoping review findings with LGBTI+ youth will provide interpretation and shared meanings. This has the potential to strengthen the development of the study, including dissemination through LGBTI+ youth networks, adding further depth and nuance.

The study team anticipate that the results will be disseminated through a peer reviewed publication, a conference presentation and presentations to the stakeholders, including LGBTI+ youth.

Better exposure through open access

This post-publication, peer review model offers rapid publication. This means articles are available more quickly than with traditional journals. The open access nature of the platform ensures that the scoping review is freely available and not hidden behind a paywall. It has been hugely encouraging to see the level of interest in the study protocol. In just three months since publication there have been over 475 views and 47 downloads. This really endorses the idea that open access gives researchers much better exposure.

HRB Open Research ensures the quality of the publication is robust and that the article fits with the scope, adherence to ethical standards, provision of the underlying data, and sufficient detail to ensure replication. This publication model ensures a transparent peer review process, with reviewers formally invited after publication. Authors suggest suitable reviewers, with the appropriate level of expertise. Peer review reports are published, alongside the reviewers’ full names and affiliations, and form an integral part of the article.

Constructive feedback

The peer review process was a highlight of publication with HRB Open Research. I would like to thank the peer reviewers for their encouraging comments, alongside their considered feedback. The comments on how the protocol could be improved has strengthened the scoping review. The revised protocol was enhanced by addressing their feedback and further refining and revising the article. Version 2 was forwarded to the peer reviewers who determined that the article has ‘passed peer review’. This is indexed in the PubMed bibliographic database and will ensure that the protocol is easy to access with the potential to promote research collaboration and avoid duplication.

As a Health Research Board funded scholar, the HRB Open Research platform offers an opportunity to publish in an open and accessible way. I would like to thank the editorial and publication team at HRB Open Research for their responsiveness, commitment to resolving difficulties and prompt follow up to ensure I was updated throughout this process.

I would highly recommend submitting to HRB Open Research.