Caregiving Immediately After Stroke: A Study of Uncertainty in Caregivers of Older Adults

BACKGROUND: Caregivers of stroke survivors experience high rates of mental and physical morbidity. Stroke has sudden onset, and the outcome is not immediately known. Uncertainties surrounding the new caregiving role may not only necessitate major changes in the lives of family caregivers but also contribute to negative health outcomes for the caregiver. PURPOSE: The purposes of this study were to describe caregiver uncertainty across the early weeks after a family member's stroke and to explore characteristics of caregivers and stroke survivors associated with that uncertainty. METHODS: A prospective, longitudinal exploratory observational study was conducted with a convenience sample of 40 caregivers and older adult (≥65 years) stroke survivors recruited from urban acute care settings in the mid-Atlantic region. Caregivers were enrolled by 2 weeks poststroke (T1) and revisited 4 weeks later (T2). Uncertainty was measured usingthe Mishel Uncertainty in Illness Scale for Family Members. An unadjusted linear mixed model was computed to examine significant associations between each caregiver or stroke survivor characteristic and repeated measures of uncertainty. RESULTS: Uncertainty at T1 (83.73 ± 23.47) was higher than reported in other caregiver populations and remained high 6 weeks poststroke (T2: 85.23 ± 23.94). Each of the following characteristics was independently associated with greater caregiver uncertainty: caregivers' older age (p = .019), being a spouse (p = .01), higher stress (p < .001), more depressive symptoms (p = .001), more comorbidities (p = .035), and poorer coping capacity (p = .002) and stroke survivors' recurrent stroke (p = .034), poorer functional status (p = .009), and insurance type (p = .008). CONCLUSIONS: Caregivers experienced persistently high uncertainty during the first 6 weeks poststroke. Better understanding of uncertainty, its associated characteristics, and its outcomes may help clinicians identify caregivers at highest risk who may benefit from targeted interventions.