Benefits, enablers and barriers to engaging in peer support for people with macular degeneration : implications for occupational therapy

Collins, B, Thetford, C and Storey, H 2019, Benefits, enablers and barriers to engaging in peer support for people with macular degeneration : implications for occupational therapy , in: RCOT 2019, 17th-18th June 2019, Birmingham, United Kingdom.

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Abstract

Aims: Age-related macular degeneration (AMD) is associated with psychosocial issues and reduced quality of life (Dawson et al., 2014). Support is increasingly provided through peer support groups (PSGs), but with limited research about these groups for people with low vision. Methods: Grounded theory research (Glaser and Strauss, 1967) aimed to explore ways to improve PSGs. 24 Macular Society PSGs were theoretically sampled, their leaders were interviewed and 7 groups were visited. 20 group members and 19 non-attenders were interviewed by telephone. All interviews were recorded and coded using NVIVO. This paper reports three emergent themes: benefits, enablers and barriers to engaging in PSGs. Findings: Benefits of PSGs included: learning about AMD and how to manage occupations ‘knowing you are not alone’ and social contact. Enablers to attending included: knowing about the group; accessibility/ transport; motivation to attend; and individual health and personal circumstances. Challenges were often the reverse of enablers: groups in rural locations with poor transport were less accessible; comorbid health issues and perceptions that PSGs are for ‘other people’ were reasons for non-attendance. Conclusions: Participants with AMD highlighted the importance of knowing how to perform daily occupations. For some, their main support came from informal chats and ‘tricks’ shared in PSGs. While PSGs certainly do perform a function, it may be that some people who could benefit most are least able to attend. Occupational therapists are needed to support people with AMD, alongside peer support, to enable occupational participation and to maximise quality of life. Ethical approval was granted by both the University of Central Lancashire Research Ethics Committee and the Research Ethics Committee of the University of Liverpool in October 2017.

Item Type: Conference or Workshop Item (Paper)
Schools: Schools > School of Health and Society
Journal or Publication Title: RCOT2019 Book of Abstracts
Publisher: Royal College of Occupational Therapists
Related URLs:
Depositing User: USIR Admin
Date Deposited: 10 Jul 2020 13:11
Last Modified: 10 Jul 2020 13:11
URI: http://usir.salford.ac.uk/id/eprint/57583

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