‘I didn’t want to face my future’: Experiences of social participation among people living with progressive neurological conditions

Social participation is important for health and wellbeing, particularly for people living with progressive neurological conditions. This study explored experiences of social participation among adults with conditions including Parkinson’s disease, multiple sclerosis and Huntington’s disease, alongside perspectives from health and social care professionals and community activity organisers in Wales, United Kingdom. Semi-structured interviews ( n = 23) and two focus groups ( n = 7) were analysed using reflexive thematic analysis. Four interconnected themes were developed: social and motivational supports; practical and structural barriers; navigating confidence, identity and autonomy; and designing better pathways to participation. Participants valued social participation for sustaining purpose, identity and connection, but described barriers including transport, cost, fragmented services, and limited suitable opportunities. Participation was also shaped by confidence, identity and autonomy. Findings highlight the need for coordinated, person-centred, and accessible approaches, with greater involvement of people with lived experience in designing participation opportunities.