Positive experiences of caregiving in stroke: a systematic review

Abstract

Objective: To identify positive experiences of caregivers, who are unpaid carers not statutory, looking after stroke survivors by systematically reviewing published quantitative and qualitative studies. Data sources: Databases were searched from 1999 to 2009 through Medline, Cumulative Index to Nursing and Allied Health Literature (CINAHL), British Nursing Index (BNI), Allied and Complimentary Medicine Database (AHMED), PsychINFO, EMBASE and Social Care Online. Reference tracking of selected papers was carried out and references of recent reviews related to stroke caregiving were also scrutinised. Review methods: The relevance of studies was ascertained by the two authors from abstracts and inclusion and exclusion criteria were then applied. Where there were differences of opinion, full copies were read and consensus achieved by discussion. Results: Three hundred and twenty-three studies were found and nine selected. Exploratory and cross-sectional studies prevailed. A range of positive experiences confirmed the findings of previous studies in both stroke and other long-term illness; care recipients progress was the most common source, other aspects included strengthened relationships, feeling appreciated, increased self-esteem. Positive experiences were associated with coping strategies. Changes in positive experiences over time were noted and differences too, for example, between new and experienced caregivers. Conceptual and methodological issues remain. Conclusions: Caregivers were able to identify positive experiences of caregiving providing a more balanced view of their role. Helping caregivers to identify their own positive experiences will encourage them to manage their situation. Longitudinal research is needed to track changes and positive influences on caregiving.

Implications for Rehabilitation

• There is some evidence that caregivers are able to identify what they value providing a more positive and balanced view of caregiving experiences other than just negative aspects.

• Positive aspects of coping are associated with positive experiences. Offering training to caregivers of a cognitive and behavioural nature, which includes a focus on positive experiences, may be beneficial and needs further consideration.

• The diversity of caregivers’ experiences – both positive and negative – should be taken into account by clinicians when supporting them.

Keywords::

• Caregiving
• carer
• positives
• stroke

Acknowledgements

Thanks to Dr Ruth Habibi, research associate for her help in checking and compiling the literature tables.

Declaration of Interest: The authors report no conflicts of interest.

Appendix

Quality assessment for quantitative studies

Quality assessment for qualitative studies