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26 Jun 2022

How could we improve care for LGBTQIA+ people who experience disadvantage, in our region?

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Exploring the care pathways of LGBTQIA+ people who experience severe and multiple disadvantage in North East England.

Issues around LGBTQIA+ visibility within, and equal access to, health and social care services is at the heart of a new study being carried out in the North East.

The work is being led by Mark Adley, a frontline practitioner with over 30 years’ experiences in the fields of HIV/AIDS, substance use, and social prescribing. Mark is now undertaking a PhD at Newcastle University which is funded by the NIHR Applied Research Collaboration (ARC) North East and North Cumbria (NENC).

The LGBTQIA+ umbrella term incorporates the wide scope of sexual orientation and gender identity minority groups, and permutations within these groups. There are many nuances to how severe and multiple disadvantage can present within these populations, who may experience stigma and discrimination from both outside and inside of their communities and support networks. Opening this study to wider collaboration from the public aims to reach out to seldom-heard LGBTQIA+ populations who may be otherwise inadvertently excluded from research projects.

Mark identified in the study’s early stages that community engagement would be integral to this project, that aims to explore the care pathways of people who have experienced severe and multiple disadvantage.

The project’s steering group consists of representatives from 16 organisations across the region including those within housing, social prescribing, domestic violence support, and LGBTQIA+ specific services, and captures experiences from services providers in both urban and rural settings.

Input from the steering group has been a key part in the study’s design, which has been moulded by lived experiences of delivering services and supporting LGBTQIA+ people as they navigate the current health and social care system.

In addition to these contributions by professionals, the study’s design has been influenced by consultations with LGBTQIA+ people with lived experienced of severe and multiple disadvantage. Mark has been supported to reach a wider group of people by Newcastle University’s Public Involvement and Community Engagement team, who have been integral in developing the project’s approach to public engagement.

Inspired by recent talks by researchers working on NIHR-funded projects (which are referenced below), Mark is now integrating Public Advisors into the project.

This approach will bring together three or four people from diverse LGBTQIA+ backgrounds, who have lived experience of severe or multiple disadvantage. They will collaborate on areas of the project such as data analysis and report-writing, and will be listed as co-authors on any reports and published work.

While they will benefit the project by bringing their own perspectives of accessing health and social care services, it is hoped that they will in turn gain experience in the research process, which can help to develop both their confidence and CV. This process has been aided by NIHR guidance on working with the public in research projects which ensures that Public Advisors are reimbursed appropriately for their time and expertise.

For more information, visit the project’s website, join the mailing list, or email m.adley2@ncl.ac.uk.

Mark’s work so far has been inspired by the following research:

  1. Adams EA, Parker J, Jablonski T, Kennedy J, Tasker F, Hunter D, et al. A Qualitative Study Exploring Access to Mental Health and Substance Use Support among Individuals Experiencing Homelessness during COVID-19. Int J Environ Res Public Health. 2022;19(6).
  2. Teodorowski P, Jones E, Tahir N, Ahmed S, Frith L. Public involvement and engagement in big data research: protocol for a scoping review and a systematic review of delivery and effectiveness of strategies for involvement and engagement. BMJ Open. 2021;11(8):e050167.