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

Trotman, Hannah ORCID: https://orcid.org/0009-0009-5554-8667, Sakellariou, Dikaios ORCID: https://orcid.org/0000-0002-2668-2834, Shepherd, Victoria ORCID: https://orcid.org/0000-0002-7687-0817 and Hamana, Katy ORCID: https://orcid.org/0000-0001-5213-253X 2026. ‘I didn’t want to face my future’: Experiences of social participation among people living with progressive neurological conditions. Journal of Health Psychology 10.1177/13591053261497149

PDF - Published Version Available under License Creative Commons Attribution Non-commercial. Download (287kB)

Abstract

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.

Item Type:	Article
Date Type:	Published Online
Status:	In Press
Schools:	Schools > Healthcare Sciences Schools > Medicine
Publisher:	SAGE Publications
ISSN:	1359-1053
Date of First Compliant Deposit:	4 November 2026
Last Modified:	04 Nov 2026 12:00
URI:	https://orca.cardiff.ac.uk/id/eprint/190670

Actions (repository staff only)

Edit Item