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（Persons with Stroke, PWS）致残的首要原因。脑卒中幸存者及其照顾者（Caregivers, CG）长期难以应对压力，会加剧二者的健康状况恶化。慢性病自我管理项目（Chronic-Disease Self-Management Programs, CDSMPs）的各类变体已被证实可缓解脑卒中幸存者与照顾者的长期压力。慢性病自我管理项目涵盖决策能力培养、问题解决训练、资源利用指导、同伴支持、医患关系构建以及环境支持等内容。本研究旨在探究用户定制化脑卒中营地是否覆盖慢性病自我管理项目的核心维度、采用标准化活动，并能缓解脑卒中幸存者与照顾者的压力水平。本研究为开放队列调查研究，遵循STROBE报告规范，在四个时间节点对压力水平进行评估：营地举办前1周、营地开营前即刻、营地闭营后即刻以及营地闭营后1个月。研究采用混合效应模型分析，对比两个基线时间点与两个营地后时间点的压力水平变化。研究团队通过梳理营地文档与调研问卷回复，评估各营地活动内容及其对慢性病自我管理项目核心维度的覆盖情况。本研究的研究对象为2019年参与脑卒中营地的脑卒中幸存者与照顾者。其中脑卒中幸存者样本（n=40）中，男性占比50%，卒中后病程为1~41年，60%为缺血性脑卒中，三分之一合并失语症，37.5%存在中重度功能缺损。照顾者样本（n=24）中，女性占比60.8%，平均年龄为65.5岁，平均照顾时长为7.4年。从营地开营前至闭营后，脑卒中幸存者（Cohen’s d=-0.61）与照顾者（Cohen’s d=-0.87）的压力水平均出现显著下降。各营地开展的活动覆盖了除1项外的所有慢性病自我管理项目核心维度。脑卒中营地是一种覆盖慢性病自我管理项目核心维度的新型干预模式，或可有效缓解脑卒中幸存者与照顾者的压力水平。未来需开展更大样本量的对照研究以进一步验证该结论。