Formal support of stroke survivors and their informal carers in the community: a cohort study

Abstract

This cohort study, aims to explore formal care provision to stroke survivors and their informal carers in the community in the UK. An initial cohort of 105 cohabitant carers of first-time stroke patients was recruited while the stroke patient was in hospital. Structured face-to-face interviews were carried out with carers prior to discharge of the stroke patient home, at 6 weeks after discharge, and 15 months after stroke. Questionnaires included measures of psychological health (CIS-R), physical health (self-rated health), social well-being (relationship quality and Sarason's social support questionnaire), handicap of the stroke survivor (Oxford Handicap Scale) and formal community support (amount of formal support and carer satisfaction). Multiple services were involved with most survivor-carer pairs (mean 5.4; range 2-9; SD = 1.7), and 74% of carers were satisfied with formal support provided. Number of services decreased with time (5.5 versus 4.1, t = 4.201, d.f. = 52, P < 0.001, 95% confidence interval: 0.71-2.01) but not time allocated. Using stepwise linear regression, service provision early after discharge was predicted by: level of handicap, recruitment centre, carer self-rated health, number of informal supporters and other care commitments. Satisfaction was predicted by quality of informal support and activity restriction. Fifteen months after stroke, predictors of formal care were: level of handicap, quality of informal support and previous caring experience. Predictors of satisfaction were: quality of the relationship between the stroke survivor and carer, age and mood. Quality of services was good, but carers lacked information, had insufficient help and were not consulted enough. Carer distress is common, yet not currently a factor influencing support provision. Formal care provided adapts with time reflecting the importance of quality of support from friends and family rather than quantity of informal supporters. These factors should be taken into consideration when planning and providing formal support for stroke survivors and their carers.