Understanding autistic adults' experiences of chronic pain services
Research type
Research Study
Full title
Exploring autistic adults' experiences of navigating chronic pain services: A reflexive thematic analysis.
IRAS ID
368003
Contact name
Gemma Cherry
Contact email
Sponsor organisation
University of Liverpool
Duration of Study in the UK
1 years, 4 months, 3 days
Research summary
Autism is a neurodevelopmental condition characterised by differences in social and emotional communication, sensory processing (such as sensitivity to noise/light), and patterns of thinking and behaviour. Many autistic people experience sensory sensitivities, which can affect how pain is felt and described. Autistic adults may also find it harder to explain details such as the location, intensity, and impact of pain. In healthcare settings, these differences can lead to misunderstandings, distress, and sometimes pain being overlooked or not treated effectively.
Chronic pain is usually defined as pain lasting longer than three months. It can have a major impact on daily life and mental health, including anxiety and depression. Chronic pain services support many people in the NHS, but little research has explored autistic adults’ experiences of using these services.
This study aims to explore autistic adults’ experiences of engaging with NHS chronic pain services. It will focus on (1) barriers to accessing and navigating services (including communication and sensory challenges), and (2) positive experiences, including what autistic adults find helpful and what adaptations they would prefer in the future.
Up to 20 autistic adults aged 18 or over will be recruited, who are currently using or have previously used NHS secondary or tertiary chronic pain services. Recruitment will take place through pain management services in Liverpool (The Walton Centre) and will be supported through third-sector organisations, social media and the research team's personal networks.
Participants will take part in one interview (around 60 minutes) by video call, phone, or face-to-face, depending on preference. Interviews will be audio-recorded, transcribed, and anonymised. Participants can withdraw from the study and request deletion of their interview data within three weeks.
Participants will receive a £20 Amazon voucher with travel costs reimbursed. Findings will inform practical recommendations to improve accessibility and reduce health inequalities.Funding provided by the University of Liverpool.
REC name
London - Central Research Ethics Committee
REC reference
26/PR/0521
Date of REC Opinion
20 May 2026
REC opinion
Favourable Opinion