Improving the experience of health services for trans and gender-diverse young people and their families: an exploratory qualitative study
| ISRCTN | ISRCTN26256441 |
|---|---|
| DOI | https://doi.org/10.1186/ISRCTN26256441 |
| IRAS number | 112111 |
| Secondary identifying numbers | 17/51/07, IRAS 112111, CPMS 13550 |
- Submission date
- 16/11/2018
- Registration date
- 30/11/2018
- Last edited
- 13/02/2025
- Recruitment status
- No longer recruiting
- Overall study status
- Completed
- Condition category
- Other
Plain English summary of protocol
Background and study aims
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.
Who can participate?
Gender-diverse young people and adults (aged over 12 years), non-paired families, GPs and Child and Adolescent Mental Health Service (CAMHS) professionals (and other ‘gateway’ health professionals)
What does the study involve?
Interviews with the participants will be recorded by audio and video. The interviewers will aim to find out the participant's views and experience of gender identity health services, as well as their broader experiences of living trans, non-binary and/or gender diverse. The participant interviews will be used to inform the development of two new sections of Healthtalk.org, a website that provides personal perspectives on different health issues. The sites will be evaluated using the e-hiq questionnaire.
What are the possible benefits and risks of participating?
Given the nature of this study, it is unlikely that participants will suffer harm by taking part. However, the impact of being interviewed can differ for each person. Therefore, each interview participant will be offered further sources of help and information after the interview should they require this – this list will likely include the Mermaids helpline and Mindline Trans+ support helpline – further sources of help will be decided in collaboration with the Advisory Group. The main beneficiaries of the research are likely to be the children and young people (and families) preparing to attend specialist services and/or those who are gender diverse.
Where is the study run from?
University of Oxford (UK)
When is the study starting and how long is it expected to run for?
June 2018 to February 2022
Who is funding the study?
National Institute for Health Research (UK)
Who is the main contact?
Dr Melissa Stepney
Contact information
Scientific
Nuffield Department of Primary Care Health Sciences, University of Oxford
Radcliffe Observatory Quarter, Woodstock Road
Oxford
OX2 6GG
United Kingdom
 ORCID ID |
0000-0001-8743-9443 |
|---|
Study information
| Study design | Qualitative observational and exploratory study |
|---|---|
| Primary study design | Observational |
| Secondary study design | Qualitative |
| Study setting(s) | Community |
| Study type | Quality of life |
| Participant information sheet | Not available in web format, please use contact details to request a participation information sheet. |
| Scientific title | Improving the experience of health services for trans and gender-diverse young people and their families: an exploratory qualitative study |
| Study objectives | Current study hypothesis as of 12/02/2025: 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. To achieve this, 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. |
| Ethics approval(s) | NRES Committee South Central – Berkshire, 11/09/2012, ref: 12/SC/0495 Our studies do not require NHS sites to act as 'Research Sites' (under the new National Research Ethics service guidelines), but only as 'Participant Identification Centres (PICS)'. Research that is conducted using these methods and for dissemination on Healthtalk is included on the National Institute for Health Research Network (NIHR CRN) Portfolio (IRAS Ref: 112111. Study ID: 13550). |
| Health condition(s) or problem(s) studied | Gender identity/diversity/variance |
| Intervention | Current interventions as of 12/02/2025: 1. Video and audio recorded in-depth narrative interviews with a diverse nationwide sample of 40 gender-diverse young people (aged 12-25 years) 2. 10 young adults over the age of 25 years 3. 20 (non-paired) family members 4. Audio recorded interviews with 20 “gateway” professionals (GPs, CAMHS professionals) Interviews will take place in people’s own homes, or another location if the participant prefers, using methods that have already been approved for national studies by an NHS ethics committee. The interviews will be video or audio-recorded (according to the participant’s preference) and will invite people to talk about their experiences of health and healthcare including perceptions of current service provision. The interviews we conduct for this project will cover a broad range of experiences and perspectives, not just of healthcare experiences but also wider experiences of living transgender, including schooling, work and careers; friends and family relationships; leisure; sense of self and body image; planning for the future; sources of support and information. We want to find out about the experiences and priorities of the transgender community and the interviews will therefore resemble a guided conversation in which the researcher has a list of possible topics and prompts rather than structured questions. The researcher will conduct the interview either in one session or two, depending on the preferences and energy levels of the participants and how long they would like to talk. Interviews are anticipated to be between 45 minutes to several hours. The impact of HealthTalk resources will be measured through an adapted version of the e-HIQ evaluation tool with young people and families to explore how useful they found the resources. Participants will be given a link to access the ‘draft’ site which they will be able to use for as long and as frequently as they like during a 24-hour period; before taking part in a focus group to explore their views of the sites, specifically as a source of information and emotional support for people waiting for specialist services. |
| Intervention type | Other |
| Primary outcome measure | 1. Understand the perspectives and experiences of young people, families and 'gateway' professionals (GPs, child and adolescent mental health professionals, gender identity clinic clinicians) in gender identity health services. 2. Identify ways in which specialist gender identity services can be improved and develop resources to help achieve these improvements. |
| Secondary outcome measures | 1. Conduct a formative evaluation of the two new Healthtalk sections, using a validated questionnaire as a basis, to assess the role of those resources as a source of information and emotional support for people waiting for specialist services. |
| Overall study start date | 19/06/2018 |
| Completion date | 28/02/2022 |
Eligibility
| Participant type(s) | Patient, Health professional, Carer, Learner/student, Other |
|---|---|
| Age group | Mixed |
| Sex | Both |
| Target number of participants | 90 |
| Total final enrolment | 95 |
| Key inclusion criteria | Current inclusion criteria as of 12/02/2025: Gender-diverse young people: 1. Aged 12-25 years Gender-diverse young adults: 2. Aged 25-35 years Non-paired family members: 3. Parents/carers or family members of gender-diverse young people Health professionals: 4. Practising GPs and Child and Adolescent Mental Health Service (CAMHS) professionals 5. Formative evaluation participants - trans/gender diverse young people & family members (parents/grandparents) |
| Key exclusion criteria | Does not meet inclusion criteria |
| Date of first enrolment | 01/04/2019 |
| Date of final enrolment | 10/02/2022 |
Locations
Countries of recruitment
- England
- United Kingdom
Study participating centres
Radcliffe Observatory Quarter, Woodstock Road
Oxford
OX2 6GG
United Kingdom
London
NW3 5BA
United Kingdom
Sponsor information
University/education
Joint Research Office
1st Floor, Boundary Brook House
Churchill Drive
Headington
Oxford
OX3 7GB
England
United Kingdom
| Phone | 00000 000000 |
|---|---|
| ctrg@admin.ox.ac.uk | |
"ROR" |
https://ror.org/052gg0110 |
Funders
Funder type
Government
Government organisation / National government
- Alternative name(s)
- National Institute for Health Research, NIHR Research, NIHRresearch, NIHR - National Institute for Health Research, NIHR (The National Institute for Health and Care Research), NIHR
- Location
- United Kingdom
Results and Publications
| Intention to publish date | 14/02/2022 |
|---|---|
| Individual participant data (IPD) Intention to share | No |
| IPD sharing plan summary | Not expected to be made available |
| Publication and dissemination plan | Dissemination routes will include two new Healthtalk sections - which had 5.7 million visitors in 2017 - and other social media platforms including Twitter and 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 and their families. Dissemination activities are scheduled March to June 2021. |
| IPD sharing plan | The datasets generated during and/or analysed during the current study are not available due to the sensitivity of the topic. |
Study outputs
| Output type | Details | Date created | Date added | Peer reviewed? | Patient-facing? |
|---|---|---|---|---|---|
| HRA research summary | 28/06/2023 | No | No | ||
| Results article | 09/02/2025 | 10/02/2025 | Yes | No | |
| Other publications | 12/02/2025 | Yes | No | ||
| Other publications | 12/02/2025 | Yes | No | ||
| Other publications | 12/02/2025 | Yes | No | ||
| Results article | Full report | 12/02/2025 | Yes | No | |
| Plain English results | 13/02/2025 | No | Yes | ||
| Results article | Full report | 13/02/2025 | Yes | No |
Additional files
Editorial Notes
13/02/2025: Results added to study outputs table.
10/02/2025: Publication reference added.
10/11/2022: Internal review.
03/11/2022: The individual participant data (IPD) sharing statement was changed and the IPD sharing summary changed accordingly
06/07/2021: The following changes were made to the trial record:
1. The overall trial end date was changed from 30/06/2021 to 28/02/2022.
2. The intention to publish date was changed from 14/07/2021 to 14/02/2022.
3. Contact details updated.
15/06/2020: The public contact's details have been changed.
12/06/2020: The public contact details have been made visible.
19/12/2018: Internal review.
