Valued activities and informal caregiving in stroke: a scoping review

Abstract

Purpose: Map the literature about valued activities and informal caregiving post stroke and determine the nature, extent, and consequences of caregivers’ activity changes.

Methods: A scoping review was undertaken, searching Pubmed, Cinahl, PsycInfo, and Google Scholar. Two researchers independently identified relevant articles, extracted study characteristics and findings, and assigned codes describing the topics and outcomes. Using thematic analysis, the main study topics and study outcomes were described.

Results: The search yielded 662 studies, 30 of which were included. These were mainly qualitative and cross-sectional studies assessing caregivers’ activity changes and related factors, or exploring caregivers’ feelings, needs and strategies to deal with their activity challenges. Although caregivers often lost their social and leisure activities, which made them feel unhappy and socially isolated, we found no studies about professional interventions to help caregivers maintain their activities. Over the years, caregivers’ activity levels generally increased. However, some caregivers suffered from sustained activity loss, which, in turn, relates to depression.

Conclusion: Loss of valued activities is common for stroke caregivers. Although high-level evidence is lacking, our results suggest that sustained activity loss can cause stroke caregivers to experience poor mental health and wellbeing. Suggestions to help caregivers maintain their valued activities are presented.

Implications for rehabilitation

• Not only stroke survivors but also their informal caregivers tend to lose their valued activities, such as their social and leisure activities.

• Although many caregivers manage to resume their valued activities over time, others suffer from sustained activity loss up to at least two years post stroke.

• Loss of valued activities in stroke caregivers can result in lower levels of wellbeing, depression, and social isolation.

• Rehabilitation professionals should screen stroke caregivers for activity loss and assist them in resuming their valued activities and maintaining their social contacts.

Keywords:

• Stroke
• informal caregiver
• valued activities
• social and leisure activities
• wellbeing
• depression

Disclosure statement

The authors report no conflict of interest.

Additional information

Funding

This work was funded by a HAN University of Applied Sciences PhD scholarship.