Background and Purpose Stroke related problems may affect the life situation of not only stroke patients but also their informal caregivers. The objective of this study was to assess life situation aspects in stroke patients and their informal caregivers during the first post-stroke year.
Methods 377 patients surviving a stroke event were followed during the first post stroke year with interviews 1 week after discharge from hospital and three and twelve months after the index stroke admission. Their informal caregivers answered questionnaires in connection to the interviews. In both groups information based on the Hospital Anxiety and Depression Scale (HAD), the Nottingham Health Profile (NHP), and GQL-Activity Scale was obtained. Additional information was sought among patients on their health situation and Mini Mental State Examination (MMSE) score, and among informal caregivers on the nature and amount of assistance provided, measured as support score and number of hours per week and perceived caregiver burden (CB) score.
Results Before index admission 85% of informal caregivers provided on average five hours’ care per week and 8-10 support score. The corresponding numbers after discharge were 91%, 10 hours per week and 13-15 support score. Support determinants were patient’s functional ability, distance to patient’s home, relation to patient, municipality social service support given. CB score determinants were municipality support given, relation to patient, functional ability, and patient age. The caregivers had higher anxiety and depression scores than the patients. Significant associations between caregiver and patient responses were found for HAD anxiety, NHP emotional and social, and GQL activity score.
Conclusions The informal caregivers reported a significant caregiver burden. There was a parallel situation between patients’ and caregivers’ situation.