Social Participation in Adults with Progressive Neurological Conditions
An observational study interviewed 30 individuals with progressive neurological conditions to explore their social participation. It found that participants valued social connections for sustaining purpose and identity, despite experiencing barriers such as transport issues and fragmented services.
- Tags
- #Other
- Most relevant to
- —
- Human efficacy
- Not established from this source
- Mechanism
- Not reported
- Evidence strength
- Limited
- Outcome
- Not reported
Why it matters
Understanding the importance of social participation can inform approaches to improve the wellbeing of people with conditions like MS, Parkinson's, and Huntington's diseases.
What this does not prove
The conclusions are based on qualitative data from a limited Welsh population, so may not apply broadly elsewhere.
Next milestone
No next milestone was established from the available source.
Study facts
- Study design
- Observational
- Participants / samples
- 30 · basis not reported
- Randomised
- Not reported
- Controlled
- Not reported
- Primary endpoint met
- Not reported
- Relevant MS type
- Not reported
- Publication date
- 2026-10-28
- Evidence reviewed
- Abstract only
- Regulatory approval
- Not reported
- Research areas
- Other
- Biological target
- Not reported
- Pathway
- Not reported
- Population
- Not reported
- Size of effect
- Not reported
- Secondary endpoints
- Not reported
- MRI endpoints
- Not reported
- Biomarkers
- Not reported
- Safety
- Not reported
Original sources
- Primary evidence'I didn't want to face my future': Experiences of social participation among people living with progressive neurological conditions. ↗DOI: 10.1177/13591053261497149
Supporting passages (8)
publication datePublication date: 2026-10-28
study designPublication types: Journal Article
subjectsThis 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.
sample sizeSemi-structured interviews (n = 23) and two focus groups (n = 7) were analysed using reflexive thematic analysis.
research categoriesSocial participation is important for health and wellbeing, particularly for people living with progressive neurological conditions.
findingsParticipants valued social participation for sustaining purpose, identity and connection, but described barriers including transport, cost, fragmented services, and limited suitable opportunities.
limitationsFindings highlight the need for coordinated, person-centred, and accessible approaches, with greater involvement of people with lived experience in designing participation opportunities.
peer reviewedPublication types: Journal Article
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