Improving the experience of health services for trans and gender-diverse young people and their families: an exploratory qualitative study.

Background: In the United Kingdom, trans young people find themselves at the centre of political storms and debate regarding their access to health care and treatment. This research was carried out against a backdrop of increasing evidence of repeated failings in health care for trans people. Compounding this, trans young people face lengthy waiting lists when seeking specialist gender services and problems with the referral process. In order to cope and thrive, online resources and spaces have become increasingly important for trans young people. Finding good-quality resources and information can be difficult for young people and families.

Objectives: Our aim was to improve the care and support of gender-diverse youth, and their families, through identifying improvements to National Health Service care and services. Within this overall aim, our objectives were to gain a better understanding of the experiences of trans youth, family members and health professionals; and to develop and evaluate sections of the Healthtalk website on young people and parent/carer experiences.

Methods: The primary method of data collection was qualitative in-depth interviews conducted between 2019 and 2021. In total, 91 interviews were conducted with 50 young people (42 aged 13-24 years and 10 aged 25-35 years), 19 family members (parents/carers) and 20 health professionals working with trans patients. We evaluated the resources with young people and families who have experience of being on the waiting list for specialist gender services.

Results: From interviews with health professionals, we identified four key domains that prevent trans and gender-diverse young people receiving good-quality care. These were structural, educational, cultural and social, and technical barriers. Parents/carers' healthcare experiences were marked by multiple challenges. These occurred at all stages of the pathway and range from getting a referral to specialist gender services, lack of support during waiting times through to sometimes unclear and lengthy assessment processes, which many experience as gatekeeping of gender-affirming care. The majority of the young people in our sample felt the current healthcare system does not cater for the diversity of trans identities and needs. A linear, one-dimensional, conception of gender identity informs services. This is restrictive and does not reflect the plurality and fluidity of experiences. Young people we spoke with generally perceived National Health Service services as built around a culture of pathologisation, gatekeeping and trans hostility, resulting in a general level of mistrust. The research supported the development of two sections of the Healthtalk website concerning young people and parent/carer experiences.

Conclusions: We make five recommendations: (1) better and empowered decision-making for trans young people; (2) recognising and catering for gender diversity in health care; (3) a 'systems change' intervention approach that goes beyond training for individual health practitioners; (4) a restructured service based upon informed consent; and (5) a positive role for the National Health Service in public debate, challenging misinformation. These findings have wider applicability to other settings/services such as education and social work.

Limitations: This research was not a service evaluation and did not evaluate current practice in Gender Identity Development Service or Gender Identity Clinics. The research was conducted in a rapidly changing field where specialist gender services for children and adolescents are undergoing significant changes based on the Cass review recommendations, which might render some service-specific information out of date.

Future work: An evaluation in partnership with trans organisations to assess the reorganisation of specialist services. Research on homeless trans youth, sibling and grandparent experiences, and trans youth in care/care leavers.

Study registration: This study is registered on ISRCTN Registry ISRCTN26256441.

Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: 17/51/07) and is published in full in Health and Social Care Delivery Research; Vol. 13, No. 4. See the NIHR Funding and Awards website for further award information.