Consumer perspectives on community aphasia groups: a narrative literature review in the context of psychological well-being

Abstract

Background: Community aphasia groups (CAGs) for people living with chronic aphasia are known to be efficacious for improving various aspects of communication and psychological functioning based on empirical quantitative evidence. However, the specific mechanisms and processes involved are not well understood and only a small number of groups exist. Further, there is a paucity of evidence on this topic from consumers, potentially limiting the development and uptake of these services. In order to proliferate and maintain groups of high quality, a deeper understanding of the potential mechanisms of positive outcomes is required. Aims: The aim of this study was to investigate consumer (people with aphasia (PWA) and family member) experiences of CAGs within the qualitative literature in relation to the theoretical construct of psychological well-being. Methods & Procedures: An extensive review of qualitative research relating to consumer views of CAGs was conducted in a systematic fashion. Study quality was evaluated using the Critical Appraisal Skills Programme, and content was interpreted in the context of a theoretical model for psychological well-being. Outcomes & Results:Eleven key studies and 35 secondary studies were found to include consumer perspectives of CAGs. The findings of the 11 key studies are presented as a narrative literature review. Overall, evidence suggests CAGs contribute positively to the psychological well-being of PWA and their caregivers. Outcomes relate to forming positive relations with others, purpose in life, environmental mastery, autonomy, personal growth, and self-acceptance. CAG characteristics and mechanisms proposed to mediate psychological well-being are discussed. However, the review is limited by a range of methodological issues in the literature. Conclusions: In order to optimise CAGs in practice, clinicians should consider group characteristics and aim to manipulate the possible mechanisms underlying positive outcomes. Further research is needed to understand the long-term lived experience of CAGs members, including those currently under-represented in the literature.

Aphasia Centers and the Life Participation Approach to Aphasia

“…Other factors that fueled the paradigm shift included recognition of the need for interventions that improved quality of life and overall well-being for people with aphasia (Brown, Worrall, Davidson, & Howe, 2012;Hilari, Needle, & Harrison, 2012;Holland & Nelson, 2013;LeDorze & Brassard, 1995;Parr, Byng, Gilpin, & Ireland, 1997;Sarno, 1991Sarno, , 1993Ross & Wertz, 2003) and reduced the negative impact of social isolation that often resulted from aphasia (Attard, Lanyon, Togher, & Rose, 2015;Davidson, Howe, Worrall, Hickson, & Togher, 2008;Elman, 2007b;Elman & Bernstein-Ellis, 1999b;Hilari & Northcott, 2006;Rotherham, Howe, & Tillard, 2015;Ryff, 1989;Ryff & Singer, 2000;Ryff, Singer, & Love, 2004;Vickers, 2010;Worrall et al, 2011). There was also increasing recognition that people with aphasia could receive benefit from opportunities for authentic conversation and development of social relationships that were typical in dyads and groups (Elman, 2007a(Elman, , 2007bEwing, 2007;Simmons-Mackie & Elman, 2011;Simmons-Mackie et al, 2014;Yalom, 2005).…”

What really matters to people with aphasia when it comes to group work? A qualitative investigation of factors impacting participation and integration

“…There is strong evidence that community‐based aphasia groups hold value for people with aphasia (Elman , Graham and Avent , Attard et al . , Rotherham et al . ).…”

“…Researchers have demonstrated that community aphasia groups fulfil critical support, communication and education needs (Attard et al . ), and offer opportunities for relationship formation (Rotherham et al . , Shadden ).…”

“Do you havemowing the lawn?” – improvements in word retrieval and grammar following constraint-induced language therapy in primary progressive aphasia

“…Like Cartwright and Elliot's (2009) participants, ANT and RBI both reported that they appreciated the opportunity to communicate with others on an equal level and were especially motivated when they could help other group members. We believe that the exchange of experiences is an especially important feature of the communicative group setting for people with PPA just as it is in post-stroke aphasia (Attard, Lanyon, Togher, & Rose, 2015;Masoud, Arnold, Schilikowski, Simon, & Simon, 2009).…”