Evaluation of social determinants of health and emotional symptoms among rural family caregivers providing palliative and end-of-life care: An explanatory sequential mixed methods study protocol

评估农村家庭照护者在提供姑息治疗和临终关怀时,其健康和情绪症状的社会决定因素:一项解释性序贯混合方法研究方案

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Abstract

INTRODUCTION: Approximately 53 million family caregivers (FCGs) support and provide home-based care for patients with chronic and life-limiting conditions. Caregiving at the end of life is an emotionally, cognitively and physically demanding role, and FCGs are often unpaid and receive little training. FCGs in remote, rural areas experience adverse social determinants of health (SDOHs), such as limited access to healthcare services and are often financially vulnerable, affecting their healthcare coverage, placing them at higher risk for poor emotional health. Adequate health literacy, a key SDOH, may be a protective factor. The purpose is to present the protocol of an explanatory sequential mixed-method study aiming to examine rural-dwelling FCGs' emotional health, relationships among FCG characteristics (demographics, co-morbidities) and SDOH and health literacy as a potential mediator. METHODS AND ANALYSIS: With 80% power to detect a mediation effect of at least 0.11 when the two-sided alpha is 0.05, an anticipated 108 adult rural FCGs who are providing palliative end-of-life care (PEOLC) will be recruited. Rigorous remote, digital- and community-based recruitment strategies will be employed to increase access to FCGs from under-represented rural communities. Self-report surveys include demographic and health characteristics, SDOH (health literacy, education level, employment status, annual income level, healthcare access and insurance) and anxiety/depressive symptoms. Descriptive statistics will be used to characterise the sample. Correlation analysis and one-way Analysis of variance (ANOVA) will be used to study the relationships between FCG characteristics, SDOH and anxiety/depressive symptoms. Hayes' PROCESS Macro for IBM SPSS Statistics will be used to test mediation effects of health literacy between FCG characteristics/SDOH and anxiety/depressive symptoms. Indirect effects will be tested using bootstrapped CIs. Semistructured interviews will be conducted with a representative sample to elicit FCG perceptions relative to how SDOH affect their care provision and emotional health, then analysed using content analysis. Quantitative and qualitative strands will be examined and compared for convergence and divergence, then integrated for final interpretations. ETHICS AND DISSEMINATION: Michigan State University's Institutional Review Board has reviewed and approved the study. Written informed consent will be obtained from each participant. Study findings will be disseminated through publications in peer-reviewed journals and presentations at academic conferences. CONCLUSIONS: Study outcomes will inform the role of SDOHs, particularly health literacy, for the development of interventions to emotionally support rural FCGs.

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