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

Collins, B; Thetford, C; Storey, H

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.

Citation

Collins, B., Thetford, C., & Storey, H. Benefits, enablers and barriers to engaging in peer support for people with macular degeneration : implications for occupational therapy. Presented at RCOT 2019, Birmingham, United Kingdom

• Presentation Conference Type: Other
• Conference Name: RCOT 2019
• Conference Location: Birmingham, United Kingdom
• End Date: Jun 18, 2019
• Online Publication Date: Aug 1, 2019
• Publication Date: Jun 18, 2019
• Deposit Date: Jul 10, 2020
• DOI: https://doi.org/10.1177/0308022619866103
• Publisher URL: https://doi.org/10.1177/0308022619866103
• Related Public URLs: https://www.rcot.co.uk/annual-conference-2019-rcot2019
• Additional Information: Event Type : Conference