Background: Stroke is a leading cause of disability for persons with stroke (PWS). Difficulty coping with long-term stress for PWS and their caregivers (CG) contributes to their poor health. Variations of chronic-disease self-management programs (CDSMPs) have reduced long-term stress in PWS and CGs. CDSMPs include training for decision-making, problem-solving, resource utilization, peer support, developing a patient-provider relationship, and environmental support.
Objective: This study examined whether a user-designed stroke camp addressed CDSMP domains, used consistent activities, and decreased stress in PWS and CG.
Methods: This open cohort survey study followed STROBE guidelines and assessed stress at four timepoints: 1 week before camp, immediately before camp, immediately after camp, and 1 month after camp. Mixed-model analysis examined changes in stress from the two baseline time points to the two post-camp time points. The research team reviewed documents and survey responses to assess activities described in camp documents and CDSMP domains across camps.
Population: PWS and CG who attended a camp in 2019. The PWS sample (n = 40) included50% males, aged 1-41-years post stroke, 60% with ischemic, one-third with aphasia, and 37.5% with moderate-severe impairment. CG sample (n = 24) was 60.8% female, aged 65.5 years, and had 7.4 years CG experience.
Results: Stress decreased significantly in PWS (Cohen's d = -0.61) and CGs (Cohen's d = -0.87) from pre- to post-camp. Activities addressing all but one CDSMP domains were evident across camps.
Conclusions: Stroke camp is a novel model that addresses CDSMP domains, which may reduce stress in PWS and CG. Larger, controlled studies are warranted.
Keywords: Adaptation; chronic disease self-management program; community; coping; stress.