Neurodivergence amongst living altruistic kidney donors (v1)
Research type
Research Study
Full title
Exploring decision making and lived experiences amongst neurodivergent altruistic kidney donors
IRAS ID
355197
Contact name
Hannah Williamson
Contact email
Sponsor organisation
South Tees NHS Foundation Trust
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
Being a living person and donating a kidney to a stranger (altruistic kidney donation) is a unique decision to make; a decision that can be life changing and life saving for the recipient of that kidney. There is not much research to tell us about the experiences of different or diverse groups who choose to donate a kidney to a stranger. There is nothing at all in the current available research about people with Autism or ADHD who choose to donate a kidney to a stranger. In one renal medicine centre in the North-East of England, we have noticed signs of Autism and ADHD among people who come forward to donate a kidney to a stranger.
We want to explore using interviews:
- Why people with Autism /ADHD would chose to donate a kidney to a stranger
- What the whole process was like for them
- If they think there is anything that needs to be improved about the process and care for future donors
We hope this could help improve the healthcare and support of any future donors with Autism/ADHD who wish to donate a kidney. We also hope this could guide us in to further research areas in the future. We also hope that the research could help stamp out unhelpful stereotypes about neurodivergent people as 'not empathic' for example.
We will advertise across the country to find 6-10 people who are autistic or have ADHD and who have donated a kidney to a stranger (altruistic non-directed kidney donation). Those who contact us would be invited for a one hour interview with us to explore their experiences. The interviews will be transcribed and analysed for themes, using an approach called IPA (Interpretive Phenomenological Analysis). This will help us find important themes and to help direct future care.REC name
West Midlands - South Birmingham Research Ethics Committee
REC reference
25/WM/0079
Date of REC Opinion
2 May 2025
REC opinion
Further Information Favourable Opinion