From recovery to regaining control of life – the perspectives of people with stroke, their carers and health professionals

Abstract

From recovery to regaining control of life-the perspectives of people with stroke, their carers and health professionalsAim: To understand how people with stroke and carers adapt over time, and how health professionals support transition to home. Method: A multi-perspective, prospective, qualitative, longitudinal study was conducted using in-depth semistructured interviews one and six months after inpatient discharge. Twenty-four participants (eight triads, including people with stroke, carers and health professionals) were included. Thematic and narrative analysis facilitated identification of cross-cutting themes according to individual trajectories poststroke. Findings: A major theme: "regaining control of life" suggested a shift in perspective after six months at home. Four sub-themes help to understand the triads' perspectives over time: i) importance of team involvement; ii) differences in perceived roles within the triad; iii) differences in expectations and collaboration within the triad and iv) planning a different future. People who were involved in supporting adaptation and rehabilitation processes were reported differently between triads and over time, showing the complexity of interrelations.A reduction in professional involvement was matched by changes in participants' goals and expectations. Conclusion: Findings suggest the importance of a dyadic perspective and a gradual increase in people with stroke and carers' active engagement. Professionals' approach throughout rehabilitation should be modified according to people with stroke and carers' changing needs and expectations.

Enablers and barriers in hospital‐to‐home transitional care for stroke survivors and caregivers: A systematic review

“…Due to shortened hospital stays, comprehensive discharge planning must begin early in the inpatient setting to enable preparation for transitioning to the community (Mountain et al, 2020;Olson, & Juengst, 2019). Barriers to a partnership approach during discharge planning include the readiness of survivors and caregivers to participate, the lack of organisational support for health professionals and inadequate person-centredness in goal setting (Busetto et al, 2020;Connolly, & Mahoney, 2018;Kable et al, 2019;Krishnan et al, 2019;Pereira et al, 2020). With mismatched care goals and priorities between health professionals and survivors/caregivers, an informed and well-planned transition is unlikely to be achieved, resulting in unmet care needs and negative impacts on the development of self-management capacities for long-term stroke management at home (Andrew et al, 2018;Hughes et al, 2019).…”

“…The findings of this review confirm that self-management capacities are codeveloped by survivors/caregivers and health professionals. Furthermore, the self-efficacy beliefs (or confidence in self-management) of survivors/caregivers are enhanced by their motivation to learn and commitment to take charge of care at home combined with health professionals' encouragement and feedback on performance (Dineen-Griffin et al, 2019;Pereira et al, 2020).…”

“…A family-centred approach to discharge planning not only empowered survivors and their families and fostered independence, but also supported family caregiving and decision-making (Cameron et al, 2013;Gustafsson, & Bootle, 2013;Pereira et al, 2020;White et al, 2007). As a caregiver highlighted:…”

“…Discrepancies between survivors and health professionals regarding discharge priorities and goals were described by stroke survivors and caregivers (Pereira et al, 2020;Sadler et al, 2014;Yeung et al, 2011). For example, a caregiver described rehabilitation activities suggested by a therapist were not accepted by the survivor due to personal preference:…”

Clinicians and individuals with acquired brain injury perspectives about factors that influence mobility: creating a core set of mobility domains among individuals with acquired brain injury

“…Fulfilling these needs would increase patients' ability to learn, improve their level of achievement, and underpin their motivation [ 52 ]. Several studies included interpretations of data from participants discussing feelings of anxiety and depression during the rehabilitation process [ 53 , 54 ]. Not engaging patients as whole persons and respecting their needs and preferences may lead to a perceived lack of control on the patient’s part, ultimately resulting in feelings of futility, decrease in confidence, and self-isolation [ 55 ].…”