Does amount and satisfaction with community support affect outcome for informal carers of stroke patients in the community?

Abstract

The aims of this thesis were to investigate: 1) health and social effects of caring on informal carers of stroke patients in the community at different points in time after stroke; 2) relationship between health and satisfaction with care; 3) relationship between satisfaction with care and level of service input.  A cohort study design was used.  105 new hands-on informal carers for stroke patients were interviewed using a fully structured, face-to-face questionnaire including measures of psychological health, physical health, lifestyle, social wellbeing, and formal community support provision.  Interviews took place prior to discharge of the stroke patient home, six weeks after discharge, and 13 months after stroke.  The carers’ cohort was compared with a cohort of 50 matched non-carers over the same time period.

Results showed that carers had significantly higher psychological distress than non-carers which was present before the stoke patient was discharged home (CIS-R 11.16 vs. 7.52, t=2.405, p=0.018) and still present a year after discharge home (12.58 vs. 7.45, t=3.34, p=0.001, CI: 2.08-8.18).  Early after stroke psychological distress was associated with perceived weight change since stroke and quality of informal social support.  After a year caring, it was determined by previous low mood, alcohol consumption and low income.  Physical health also deteriorated over the course of the study (number of health problems: 1.55 first vs. 1.87 final interview, t=2.02, p=0.046, CI: -0.64-0.002).  Physical health was predicted by age early on.  Later previous poor health, factors associated with increased workload, and support received to help with that workload became more important.  All carers received input from the formal community services and 64% were satisfied with that support.  Soon after discharge, amount of formal support was associated with level of handicap of the stroke patient, carers’ self-rated health, number of supporters identified and other care commitments.  Later on, in addition to level of handicap, quality of support and previous experience of care giving became more important factors.  Soon after discharge, satisfaction with support depended on perceived quality of informal support and restriction of usual activities.  A year later quality of the relationship between stroke patient and carer prior to discharge, age, psychological distress and cost of care were more important factors.

In conclusion, carers suffer physical and psychological health consequences as a result of care giving.  These start very early on, before the stroke patient is discharged home.  Carers with poor social support, and poor pre-existing relationships with the stroke patient, have more psychological distress.

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