Understanding the meanings of the personal lived experiences of spousal care partners participating a in Chronic Disease Self-Management Program Describing the meaning and essence of the phenomenon

As predicted by the Rising Tide Study, the prevalence of dementia is increasing, and it is a chronic disease that is costly in its social, economic and health dimensions (WHO, 2012; Alzheimer?s Society of Canada (ASC), 2010). As a chronic disease, dementia changes lives, and places significant physical, emotional, social, and economic burden on families (Lee & Cameron, 2004).
\nWhile there are many personal and social benefits to caring for elderly people at home, caring for loved ones with dementia is associated with well-documented increases in care partner burden, distress, and decreases in mental health and well-being (Sorensen et al, 2006). The burdens of caregiving occur so frequently that family care partners are often the ?invisible second patients?, and studies have shown that caring for someone with dementia can be more stressful than other caregiving and is associated with added physical and mental health difficulties (Brodaty & Donkin, 2009; Gilliland, & Bush, 2001; Ory, Hoffman, Yee, Tennstedt, & Schulz, 1999; Brodaty, Green, & Koschera, 2003; S?rensen, Pinquart, & Duberstein, 2002; Sarna &Thompson, 2008; Connor et al, 2008). It is recommended that health care providers support care partners to consider their own needs (Nuffield Council on Bioethics, 2009).
\nChronic disease self-management programs designed to specifically meet the needs of people with chronic diseases have been evaluated and has been shown to be feasible, and beneficial beyond usual care in terms of improved health behaviors and health status, and reduced hospitalization and health care costs (Lorig et al, 2001). While self-management programs have typically focused on physical chronic conditions such as arthritis, heart disease, and diabetes, self-management programs for care partners experiencing burden of care, focusing on their own physical and mental health needs are not well established or studied in the literature. Self-management is often provided as an educational program, one of the most common being the Chronic Disease Self-Management program (CDSMP) (Bodenheimer, Lorig, Holman, & Crumbach, 2002). The CDSMP is a broadly implemented group program that educates individuals and has been shown to be effective in providing generalizable skills to help manage their chronic conditions and live well regardless of their chronic illness (Health Council of Canada, 2012a).
\nThe purpose of this qualitative phenomenological study was to understand the experiences of care partners participating in the Chronic Disease Self-Management Program (CDSMP) while they are caring for a spouse living with dementia. The focus was on their experiences, the meaningfulness they attribute to participating in the CDSMP, whether it is helpful and suitable for them, and its overall contribution to the caring experience. A detailed exploration of the care partners? personal experiences and their personal perceptions of the CDSMP was undertaken. Their experiences were analyzed and interpreted to find essential themes that together allowed meaning of the experience to emerge. I recruited four (4) participants who had agreed to participate in the study which enabled in-depth inquiry into the essence of their experiences.
\nThree essential structures emerged from the data as the Vancouver School of Phenomenology process of analysis was completed: transforming with others, transforming to a new normal, and transforming of focus. Two themes that comprise the essential structure of transforming with others include sharing experiences and having a safe environment to release emotions. Two themes that comprise the essential structure of transforming to a new normal include a shift in roles toward new normal, and the contextual readiness for transformation. Three themes comprise the essential structure of transforming of focus and they include refocusing on self-care, continued self-management support, and celebrating accomplishments. Each essential structure and the thematic statements are presented in this paper with a description from the participants as evidence.
\nInsights from this study, based on the participants differing experiences, suggest that that in order for self-management programs to be most effective in meeting care partner needs, an assessment of program fit and any structural barriers, and consideration of the contextual readiness for transformation is imperative to the success of the intervention. A modification of the program to ensure sufficient time for dialogue between members is also reported as essential for maximum learning and transformation. The findings of this study suggest that spousal care partners of those living with dementia, who were contextually ready, participating in the CDSMP attributed their personal experiences as positive and helpful with improving their overall wellbeing.

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