This month we review classic applied research in medical rehabilitation that for seven years has instructed those who serve stroke survivors and their families. In 2013, Australian rehabilitation specialists reported on a study that explores the concept of recovery from stroke, focusing in particular on the views of two groups:  stroke survivors; and  their non-professional / informal care providers. The goal of this research was to identify which factors — in the perceptions of such individuals — are most important in shaping their understanding of the concept ‘recovery from stroke’.
The research utilized input from fourteen individuals who participated in focus groups, with issues probed in semi-structure questionnaires. Eight of the participants were stroke survivors, and the other six were non-professional care providers. The initial focus group involved all 14 participants; it was followed by two partitioned focus groups – one exclusively for stroke survivors, and the other for caregivers alone. All group discussions were recorded for subsequent content analysis, the researchers employing a dual coding scheme to summarize results. Data analysis concentrated on identifying the main theme to be encountered in all focus groups, and discursively characterizing their subthemes.
The main theme to emerge from the content analysis was the topic of “individual recovery expectations.” This overarching theme arose from the synthesis of three distinct and important subthemes heard unmistakably in each of the focus groups – namely, “essential elements of recovery”, “returning home”, and “the environment of rehabilitation.” Key observation were that assumptions and attitudes regarding these topics could – and often did – diverge between the two groups under study here, and – independently – that those assumptions in turn could diverge from reality itself. In unsurprising contrast, the assumptions of medical professionals providing rehabilitation services were most realistic. Divergent expectations can lead to misunderstandings among stakeholders.
For example, ‘essential elements of recovery’ comprised views on ‘a return to normality’, an ‘expectation of continuous improvement’, ‘the possible need to reevaluate goals’, and ‘reintegration into social networks.’ Among both stroke survivors and caregivers, frustration at the slow rate of progress and at the necessity of modifying goals was widespread. Mostly caregivers were concerned about stroke survivors diminished interest in, and opportunities for, social interaction. Both stroke survivors and caregivers had anticipated that discharge from hospital to home would make managing easier; not so. Caregivers commented on unanticipated financial and psychological burdens of their new roles, and on their needs for respite. Stroke survivors worried about new demands their deficits would impose on caregivers. The authors conclude by advocating for community-based programs to help stakeholders jointly negotiate these issues, on an on-going basis, during the outpatient phase.
For further reading: C. Graven, D. Sansonetti, N. Moloczij, et al., 2013, Stroke survivor and career perspectives on the concept of recovery: a qualitative study. Disability & Rehabilitation, 35(7): 578–585, DOI 10.3109/09638288.2012.703755