Caring for a loved one with scleroderma: Experiences of caregivers




Maril, Virginia

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Scleroderma is a severe and chronic rheumatic illness affecting approximately 300,000 women and men in the United States. Many patients who live with the disease are cared for by loved ones. While caregiving may provide some people with an enhanced sense of self-esteem and garner social approval, caregiver strain has been linked to increased instance of depression, anxiety, blood pressure, and mortality. Often, caregivers' ignore changes in their health because they are more focused on the well-being the patient (Long et al., 2004). Despite the growing numbers of scleroderma patients, there is very little research in the psychological literature on the emotional impact of caring for someone who is living with this disease. The current study sought an understanding of these experiences via a phenomenological approach that provided a rich description of the emotional, social, and psychological effects of caring for a loved one with scleroderma. Thirteen caregivers participated in individual interviews. Data analysis yielded three core clusters of Emotional Impact, Existential Concerns, and The Unique Disease. Categories of feeling the impact, personal stress, relationships, shifting into a different life, finding meaning, individuality, mortality, complications, and isolation comprised the clusters. Pearlin, Mullan, Semple, and Skaff (1990) provided a stress process model of caregiver stress related to dementia that was adapted in the current study for scleroderma caregivers. Implications for theory, research, and practice are delineated.



Psychology, Health and environmental sciences, Caregiving, Phenomenology, Qualitative, Scleroderma