Critical elements and outcomes of a residential family-based intervention for aphasia caregivers

Background: Families living with aphasia often have unmet needs despite intervention provided in hospital and rehabilitation environments (Denman, 1998; Michallet, Le Dorze, & Tétreault, 2001). Michallet and colleagues found that families living with aphasia need information and support throughout the care continuum. If needs are unmet during the early stages of rehabilitation they persist, and as families deal with the long term sequelae of aphasia, new needs emerge in relation to communication and role changes. Few recent interventions have addressed the complex needs experienced by caregivers of people with aphasia (e.g., Hinckley & Packard, 2001; Hinckley, Packard, & Bardach, 1995; Pound, Parr, & Duchan, 2001). Aims: This research aimed to identify the critical elements and outcomes of a residential intervention for families living with aphasia. Methods & Procedures: Narrative data were collected from 19 spouses, siblings, and adult children of persons with aphasia who attended a residential intervention over 3 years. Data collected from participants during and following the intervention were triangulated with field notes recorded by 34 students trained in field observation techniques. All narrative data were transcribed, coded, and analysed using procedures described by Luborsky (1994). Outcomes & Results: Data analysis revealed four critical intervention elements: (a) an emotionally and physically safe environment; (b) respite from the demands of caregiving; (c) peer learning; and (d) participation of families with different amounts of time post aphasia onset. Outcomes from the perspective of the participants included: (a) a renewed sense of hope; (b) improved ability to access their social support resources; (c) improved ability of caregivers to monitor their well-being; (d) greater acceptance of the family's altered state; and (e) emergence of a new social support network. Analysis of thematic relationships showed a web of interconnections between all critical elements and outcomes of the intervention. A central intervention element was learning from peers with different levels of caregiving experience. Conclusions: Some aspects of caregiver learning appear to depend on interventions that are structured to maximise reflective learning from peers. Professionals may underestimate the value of such learning in intervention for caregivers of persons with aphasia.