Caregiving Experiences After Stroke

BACKGROUND: Stroke is a major cause of disability in the United States. Over half a million Americans suffer strokes each year, and many of the 75% who survive are cared for in home settings, by family caregivers. The caregiving experience is often stressful and can result in negative physical and mental health outcomes for the family caregiver. OBJECTIVES: The purpose of this longitudinal study was to examine relationships between patient characteristics, characteristics of the caregiver, and caregiver coping resources with caregiver physical and mental health outcomes at 3 and 6 months after the loved one's stroke. A secondary aim was to compare family members' assessments of patient disability with ratings by clinicians. METHODS: The caregiver study was conducted in collaboration with a study of patient outcome after stroke. Both studies used the same cohort of stroke patients and their primary caregivers. Detailed clinical assessment of patient status was conducted 1, 3, and 6 months after stroke. Caregivers (N = 83) completed mailed questionnaires 1, 3, and 6 months after the patient's stroke. The survey included quantification of fatigue and energy, assessment of mood disturbance, stress, spirituality, and reactions to the caregiving situation, which provided a detailed assessment of caregiver characteristics, coping resources, and physical and mental health status. RESULTS: Caregivers reported stable perceptions of fatigue, vigor, recurrent sorrow, perceived stress, finances, family support, physical health, and depressive state symptoms at 1, 3, and 6 months after the loved one's stroke. The relationship between physical health and depressive symptoms was reciprocal at 3 and 6 months. Perceived stress was related to mental health at 3 and 6 months. Caregiver ratings of disability at 1 month paralleled clinical assessments using the Orpington Prognostic scale. CONCLUSIONS: Part of a comprehensive approach to stroke after-care should include comprehensive assessment of caregiver functioning soon after the loved one's stroke. Early assessment might identify persons at greater risk for physical and mental health problems in a continuing caregiving role.