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

ABSTRACT

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

Acknowledgments

The primary author thanks Dr Leora Cherney, Dr Allen Heinemann, Dr Veronica Rowe, Dr Jeffrey Damaschke, Dr Carolee Winstein, Dr Lori Thuente, Dr Richard Gershon, and Dr Catherine Gierman-Riblon. Without the support and mentorship of each person listed above, this research and manuscript would not have been possible. You are living examples that we stand upon the shoulders of giants.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Supplementary material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/10749357.2023.2196468.

Correction Statement

This article has been corrected with minor changes. These changes do not impact the academic content of the article.

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.