Psychological aspects of caregiving after stroke: A systematic scoping review and thematic synthesis of theories.

Abstract

Informal caregiving comprises a core part of stroke survivors' rehabilitation. It can encompass positive elements, yet adopting and sustaining this role can affect carers' physical and mental health. Understanding carers' experiences is important for clinical psychologists, to highlight potential roles in supporting unmet needs. Theories of stroke informal carers' experiences exist, yet no previous attempt has been made to identify, organise and describe them, and synthesize key themes. This PRISMA-ScR guided scoping review aimed to identify theories and generate new knowledge of the experience and psychological impact of caregiving. Six databases were systematically searched, identifying relevant theoretical and empirical papers. Seventeen papers, presenting 13 distinct theories, were included and theories thematically synthesized. Two overarching themes were developed - "Systemic and Cultural factors" and "A staged process" - containing three main themes - "Adjustment to aspects of post-stroke life", "Emotional and psychological aspects of caregiving", "Carer Needs" - and four subthemes constituting relevant stroke pathway stages. Substantial theoretical knowledge exists that was useful in generating key themes of experiences and psychological impact of caregiving across the stroke pathway, to guide clinical practice and future research. Findings indicate that changes to carers' self-identity as they adjust to the role are not sufficiently captured by existing theories.