Content uploaded by Esther Jolliff
Author content
All content in this area was uploaded by Esther Jolliff on Sep 20, 2024
Content may be subject to copyright.
Introduction
The social and emotional well-being of people with aphasia (PWA) is an essential consideration in aphasia rehabilitation (Cruice et
al., 2003; Davidson and Worrall, 2013; Holt-Lunstad et al., 2010; Kagan et al., 2014). In Cornwall, Connect (The Communication
Disability Network) was the sole agency providing long-term support for PWA through an innovative peer support framework
when, in October 2016, the charity announced its closure. A network of nine peers-support groups spread over the county quickly
to disband. At the time of the research (autumn 2017) just three groups were still active.
Research Aims
The aim of this study was to investigate the impact of the end of
Connect, by exploring the experiences and perspectives of people
who were involved with the organisation.
Method
Three semi-structured interviews were conducted with four stakeholder groups. A
combination of one-to-one and group interviews were used. Interviews were recorded,
transcribed and then analysed using thematic analysis.
Participants
Participants were people who had used, organised or
referred to the Connect service and were accessed via a
gatekeeper with prior knowledge of the service.
Results
Four themes identified by
participants were:
1) Negative impact of the aphasia:
“they think your brain’s gone, but it
hasn’t. I’m still human” “I’m not
stupid”.- Henry, PWA
2) Positive impact of Connect. All
participants spoke about the social
and emotional benefits they had
experienced, “Suddenly you feel like
you’ve found your little home”.- Mary,
PWA
3) Barriers to accessing support. The
difficulties faced by people living in a
rural county, were discussed. “People
who had had a stroke; they couldn’t
necessarily get three buses to get to
somebody on the other side of
Cornwall” – Lorna, SLT
4) Need for education. Participants
described a lack of awareness of
aphasia by the public and medical
professionals and identified the need
for education, “All education has to
start is in schools. They might
remember when they’re 26 years old
and their mother has a stroke”-
George, PWA
Discussion
The findings support seminal literature on this subject which describes the negative
psychosocial impact of aphasia (Cruice et al., 2003; Davidson and Worrall, 2013; Kagan
et al., 2014; Holt-Lunstad et al., 2010). Participants emphasised their belief in the
particular benefits of a peer support model. Currently, this type of service delivery is
lacking evidentiary support, although this is a being examined in ongoing research (e.g.
Hilari et al., 2017)
Participants reported that they had encountered a lack of awareness and fear of
aphasia, which acted as a barrier to developing and utilising services. They were also
passionate about raising the profile of aphasia to combat this; identifying education as
the key to changing health-care provision for PWA.
References
Cruice, M., Worrall, L., Hickson, L. and Murison, R. (2003) Finding a focus for quality of life with aphasia: Social and emotional health, and psychological well-being. Aphasiology. Vol. 17, No. 4: 333-353.
Davidson, B. and Worrall, L. (2013) Living with aphasia: A client-centered approach. In Papathanasiou, I, Coppens, P and Potagas, C (Eds.) (2012) Aphasia and Related Neurogenic Communication Disorders. Burlington, Massachusetts,
USA : Jones & Bartlett Publishers: 255-276.
Hilari K., Behn N., Marshall J., Simpson A., Thomas S., Flood C., Northcott S., Goldsmith K., McVicker S. (2017) Adjustment post-stroke and aphasia: protocol for the SUpporting well-being through PEeR-Befriending (SUPERB trial). Royal
College of Speech and Language Therapists Conference, Glasgow, UK. Poster presentation
Holt-Lunstad, J., Smith, T.B. and Layton, J.B. (2010) Social relationships and mortality risk: A meta-analytic review. PLoS Medicine. Vol. 7, No. 7: 1-20.
[Online] Available from: http://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1000316#aHR0cDovL2pvdXJuYWxzLnBsb3Mub3JnL3Bsb3NtZWRpY2luZS9hcnRpY2xlL2ZpbGU/aWQ9MTAuMTM3MS9qb3VybmFsLnBtZW
QuMTAwMDMxNiZ0eXBlPXByaW50YWJsZUBAQDA=
Kagan, A., Simmons-Mackie, N., Rowland, A., Huijbregts, M., Shumway, E., McEwen, S., Threats, T. and Sharp, S. (2008) Counting what counts: A framework for capturing real-life outcomes of aphasia
intervention. Aphasiology. Vol. 22, No. 3: 258-280.
Thematic Map