A 3-day ‘stroke camp’ addressed chronic disease self-management elements and perceived stress of survivors of stroke and their caregivers reduced: Survey results from the 14 US camps

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. This study examined whether a user-designed stroke camp addressed CDSMP domains, used consistent activities, and decreased stress in PWS and CG. 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. PWS and CG who attended a camp in 2019. The PWS sample (<i>n</i> = 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 (<i>n</i> = 24) was 60.8% female, aged 65.5 years, and had 7.4 years CG experience. 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. Stroke camp is a novel model that addresses CDSMP domains, which may reduce stress in PWS and CG. Larger, controlled studies are warranted.

脑卒中（Stroke）是脑卒中幸存者（PWS）致残的首要诱因。脑卒中幸存者及其照护者（CG）长期难以应对压力，这会导致其健康状况不佳。慢性病自我管理项目（CDSMPs）的衍生模式已被证实可改善脑卒中幸存者与照护者的长期压力水平。此类项目涵盖决策培训、问题解决、资源利用、同伴支持、构建医患关系以及环境支持等核心模块。本研究旨在评估一款用户定制的脑卒中营是否覆盖了CDSMP的核心领域、采用标准化活动流程，并能降低脑卒中幸存者与照护者的压力水平。本研究为开放队列调查研究，遵循STROBE指南开展，在四个时间点评估压力水平：营期前1周、营前即刻、营后即刻以及营后1个月。研究采用混合效应模型分析，对比两次基线时间点与两次营后时间点的压力变化情况。研究团队通过梳理研究文档与调查问卷结果，评估了脑卒中营文档中提及的活动，以及各营期对应的CDSMP核心领域覆盖情况。本研究的研究对象为2019年参与脑卒中营的脑卒中幸存者与照护者。其中脑卒中幸存者样本（n=40）中，男性占比50%，卒中后病程1~41年，60%为缺血性卒中，1/3存在失语症，37.5%存在中重度功能障碍；照护者样本（n=24）中，女性占比60.8%，平均年龄65.5岁，平均照护时长为7.4年。从营前到营后，脑卒中幸存者的压力水平显著降低（科恩d值=-0.61），照护者的压力水平同样显著降低（科恩d值=-0.87）。各营期均覆盖了除1项以外的全部CDSMP核心领域。脑卒中营是一种覆盖CDSMP核心领域的新型干预模式，或可降低脑卒中幸存者与照护者的压力水平。未来需开展更大样本量的对照研究加以验证。