Note: This account only posts external research that has been approved by the NAS research team.
Research background
We are a team of UK researchers exploring how to improve healthcare, including palliative and end‑of‑life care, for three groups: autistic adults living with a life‑limiting condition, carers of autistic adults with a life‑limiting condition, and autistic adults who are carers of someone living with a life‑limiting condition. We recognise how challenging it can be to navigate healthcare when living with, or supporting someone with, a life‑limiting condition, and we want to understand what helps, what hinders, and what needs to change.
We are designing a research study to explore the experiences of autistic adults, carers, and the professionals involved in the care of people living with a life‑limiting condition, and we would value your input to help shape this work.
Who can take part?
We are organising an online focus group and are looking for:
- Autistic adults living with a life-limiting condition
- Current or former carers of autistic adults with a life-limiting condition
- Autistic adults who are carers (or former carers) of someone living with a life-limiting condition
What will taking part involve?
This will be an online focus group lasting up to one hour, held during the first two weeks of June. During the session, we will discuss:
- Whether our research questions feel important and relevant to autistic adults, carers of autistic adults, and autistic carers of people with a life-limiting condition
- Whether there are other questions you think we should be asking
- The most effective and accessible ways to invite people to take part in the studys
- How people would prefer to share their experiences of healthcare, including palliative and end-of-life care (for example, through surveys, interviews, or other formats)
Your experiences of living with a life-limiting condition, or supporting someone who has a life-limiting condition, will help us design a study that can genuinely improve healthcare and support for autistic adults and their carers.
Payment
You will receive £27.50 for attending the focus group.
How to get involved
If you would like to express an interest please contact Dr Nuriye Kupeli directly at: n.kupeli@qmul.ac.uk
Thank you for considering this study.