Adjustment processes in chronic aphasia after stroke: Exploring multiple perspectives in the context of a community-based intervention

Abstract

Background: The impact of chronic aphasia following stroke on quality of life (QOL) is widely acknowledged, with improved QOL recognised as an important outcome in aphasia recovery and supported by emerging quantitative measures. One of the key constructs recognised as contributing to QOL in other chronic conditions is psychosocial adjustment, the mechanisms of which are little understood for the person with aphasia. Aims: This study addressed adjustment processes in aphasia by exploring multiple perspectives from people engaged in the Communication Hub for Aphasia in North Tyneside (CHANT), a two-year community intervention for long-term aphasia. The study aimed to explore the adjustment process over time in people with aphasia using thematic analysis of personal narratives derived from a combination of sources: semi-structured interviews with reflections on experiences, quantitative measures of change in QOL and self-assessments of change. Methods & Procedures: Three people with mild or moderate chronic aphasia and three people without aphasia involved in CHANT were recruited (a carer, a volunteer, and a local government employee) to participate in semi-structured interviews at two- to three-month intervals over a 12-month period. A total of 28 semi-structured interviews were transcribed and analysed thematically by a small team using NVivo8 software. Narrative data were interpreted within the broader context of QOL measures and self-assessments of living with aphasia (Mumby & Whitworth, 2012).Outcomes & Results: Changes over time that reflected evidence of psychosocial adjustment from the multiple perspectives of the participants covered five core themes: Intervention type, Effectiveness, Barriers, Facilitators, and QOL. A model is proposed to encapsulate the barriers and facilitators that impacted on the process of adjustment and contributed to QOL for individuals involved in the intervention. This model is consistent with the domains from other classifications based on the International Classification of Functioning, Disability and Health (ICF; World Health Organization, 2001), viewing adjustment as a progression towards “wholeness”. The processes involved in personal (and specifically, emotional) adjustment to aphasia are explored, including three stages in rationalisation—Looking back, Looking around, and Looking forward—and the process of transforming negative emotional reactions into positive outcomes. Conclusions: The processes of adjustment in chronic aphasia are complex and vary both over time and according to individual perspectives and circumstances. This preliminary longitudinal study identified commonalities in participants engaged in long-term intervention over 12 months, enabling models of adjustment to be proposed for further exploration and evaluation.