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

Informal caregiving comprises a core part of stroke survivors’ rehabilitation. Providing informal care 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 their potential role in supporting carers’ unmet needs. Theories of stroke informal carers’ experiences exist, yet no previous attempt has been made to identify, organise and describe them, and synthesise their key themes. This PRISMA-ScR guided scoping review aimed to identify theories of stroke informal caregiving and generate new knowledge of the experience and psychological impact of caregiving, to guide stroke service improvements. Six databases were systematically searched, identifying relevant theoretical and empirical papers. Seventeen papers, presenting thirteen distinct theories, were included and the theories thematically synthesised. 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 the experiences and psychological impact of caregiving across the stroke pathway, to guide clinical psychology practice and future research directions.