Background Gender dysphoria (GD), is distress relating to a discrepancy between one's gender identity and sex assigned at birth, and is associated with suicidality and poor mental health. A disproportionate number of attendees at gender clinics (13.3%) have an Autism Spectrum Disorder (ASD), a neurodevelopmental condition present in 1% of the population and defined by deficits in social communication and repetitive behaviours and interests. The NHS has been found to be providing inadequate care to both autistic people and to adults with GD, and there is little research on ASD and GD to guide service improvements for this group.Aim To develop guidelines for NHS services to adapt to meet the needs of this group, by answering the following questions: How does autism affect the presentation and phenomenology of GD? What are the barriers to autistic young people and adults receiving the right support for GD? How could the NHS better meet the needs of those with autism and GD? Methods Qualitative methods will be employed due to the exploratory nature and experiential focus of the research questions. Semi-structured interviews adapted for autistic participants will be analysed using a contextualist thematic approach. Study 1 will be a systematic review of qualitative studies investigating the phenomenology of gender dysphoria in non-autistic people. The search strategy will be pre-determined and studies selected based on inclusion and exclusion criteria. Data regarding the phenomenology of GD in non-autistic people will be extracted using a standardised table. Study 2 will be a qualitative investigation of the phenomenology of GD in autism. Purposive sampling will be used to recruit 20-30 autistic adults with GD for 60 minute interviews. Recruitment will end when data saturation is achieved. The themes will be compared with Study 1 to assess how the phenomenology of GD is different in autism compared to non-autistic individuals. Study 3 will investigate the experiences of autistic people accessing NHS services for GD, with a focus on barriers. Three groups will be recruited, autistic 12-18 year olds (n=20-30), their carers (n=10), and autistic adults (n=20-30). Two qualitative analyses will be conducted, one for young people and carers and the other for adults.Study 4 will qualitatively investigate the views of NHS clinicians on the topics of Studies 2-3. At least three focus groups will be held with clinicians (n=15-24) who work in child and adult gender clinics and CAMHS services. The results will be used to co-produce guidelines with the PPI group which will inform NHS clinicians how GD presents differently in autistic people, key risk issues, and barriers to this group receiving adequate healthcare. Impact and Dissemination The research will be published in high impact journals and at international conferences. The PPI group will produce a dissemination plan for the ASD and GD communities. The guidelines will be disseminated to relevant NHS services in partnership with the PPI group. The research will lead to the improved identification, quality of care and risk management provided to young people and adults with these conditions.
|Effective start/end date||1/04/19 → 31/03/22|
In 2015, UN member states agreed to 17 global Sustainable Development Goals (SDGs) to end poverty, protect the planet and ensure prosperity for all. This project contributes towards the following SDG(s):