Title: Meeting the transgender challenge: improving the experience of health services for gender diverse young people and their families
Funder: Department of Health and Social Care

Abstract: RESEARCH AIM to improve the care and support for young people and their families before and after referral to specialist gender identity services._x000D_ _x000D_ BACKGROUND Gender identity clinics provide specialist services for people who feel that their gender is different from the sex on their birth certificate. Demand for gender identity clinics is increasing; the Tavistock and Portman Gender Identity Development Service for young people has an estimated waiting list of 1400 people. This can mean lengthy waits for young people &their families who are likely to have questions, concerns and support needs during this period. Finding balanced online information can be challenging as views about transgender issues vary widely. Little is known about the experiences, information and support needs of young people waiting for gender identity clinic services. This research will improve the care and support of gender questioning people, and their families, by identifying possible improvements to care and by providing resources, information and support for self-management. _x000D_ _x000D_ RESEARCH OBJECTIVES _x000D_ 1)Develop a full, all-around understanding of the perspectives and experiences of young people, families & health professionals (GPs, child and adolescent mental health professionals, gender identity clinic clinicians) who work in or with gender identity health services._x000D_ 2)Identify ways in which specialist gender identity services can be improved and develop resources to help achieve these improvements._x000D_ 3) Support young people & their families through the development of two new sections on the website ‘Healthtalk’, which is a free resource offering reliable information about health issues through the sharing of people's real-life experiences._x000D_ 4)Evaluate these Healthtalk sections with young people and their families on the waiting list for specialist services. _x000D_ _x000D_ DESIGN AND METHODS_x000D_ We will:_x000D_ 1. Conduct in-depth interviews with 40 young people (up to the age of 25), 10 adults over the age of 25, 20 families and 20 health professionals to develop a comprehensive understanding of the experience of gender identity services. (Objectives 1 and 2)_x000D_ 2: Hold a national networking event to present key findings, explore best practice and potential for service improvements. (Objective 2)_x000D_ 3. Produce two new website sections on Healthtalk based on personal experiences to provide information and emotional support for young people &families. (Objective 3)_x000D_ 4: Use interviews and a survey to evaluate the Healthtalk section with young people &their families waiting for specialist services. (Objective 4) _x000D_ Patient and public involvement: Several charities (including The Diversity Trust & Gendered Intelligence) are actively involved in the proposal. An online (Facebook or similar) group will engage trans & gender diverse people throughout the project. The study Advisory Group will guide the research and comprise at least 50% transgender people._x000D_ _x000D_ DISSEMINATION_x000D_ Dissemination routes will include two new Healthtalk website sections - which had 5.9 million visitors in 2017 - and other social media platforms including Twitter & Facebook, specialist clinics and more traditional academic publications and conference presentations. Co-applicants and participants in the national networking event will help to co-produce recommendations and resources to help health and care staff to respond effectively to young people & their families.

Lay abstract: Gender Identity Services provide advice and help for people who find themselves distressed by their natally defined gender and who experience themselves as living with a wrongly gendered body. Demand for gender identity clinics is increasing; the Tavistock and Portman Gender Identity Development Service for young people (which is the only NHS funded clinic for gender diverse young people) has an estimated waiting list of 1400 people. This can mean lengthy waits for young people and their families who are likely to have questions, concerns and support needs during this period. Finding balanced online information can be challenging as views about transgender issues vary widely. Little is known about the experiences, information and support needs of young people waiting for gender identity clinic services. Our proposed research will help address this shortfall through a nationwide collection of narrative interviews with gender diverse children, young people and adults, and families._x000D_ Our aim is to improve the care and support for young people and their families before and after referral to specialist gender identity services. Our objectives are to:_x000D_ •Develop a 360 degree understanding of the perspectives and experiences of young people, families and “gateway” professionals (GPs, CAHMS, gender identity clinic clinicians) in gender identity health services._x000D_ •Identify ways in which specialist gender identity services can be improved and develop resources to help achieve these improvements._x000D_ •Support young people and their families through the development of two new sections on Healthtalk.org._x000D_ •Evaluate these Healthtalk sections with patients and their families on the waiting list for services._x000D_ Methods. To meet our objectives we will:_x000D_ •After updating our literature and field review, we will conduct video and audio recorded in-depth narrative interviews with a diverse nationwide sample of 40 gender questioning young people (up to the age of 25 years ), 10 adults over the age of 25 years, and 20 (non-paired) family members. We will audio record interviews with 20 “gateway” professionals (GPs, Child and Adolescent Mental Health Service professionals). (Months 1 to 21)_x000D_ •Hold a national networking event to present key findings from the research, explore best practice and potential for service improvements and recommendations to help health and care staff to respond effectively to young people and their families. (Month 24)_x000D_ •The interviews will be used to develop an online resource (as part of the well-established, public facing Heathtalk.org) featuring analyses and balanced video and audio extracts from the interviews, to improve the care and support of patients and families. The material will also be made available to train staff, inform service improvements and develop resources for relationship and sex education in schools. (Month 28)_x000D_ •Conduct a mixed methods formative evaluation of the new Healthtalk sections, using a validated questionnaire, to assess its role as a source of information and emotional support for people waiting for specialist services. (Months 26 to 27)_x000D_ Anticipated impact: specialist service providers have identified the need for a reliable resource, featuring an appropriately wide range of experiences, to prepare, inform and support those on the waiting list, currently estimated to be 1400 people at the GIDS. Specialist staff, GPs, CAMHS, Relationship and Sex Education (RSE) teachers will all potentially benefit.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: MENTAL HEALTH