Validating a model of chronic illness and family caregiving
Purpose/Objectives: To explore the experience of informal caregivers of patients with a primary brain tumor by identifying themes of the caregiving experience specific to this population. Journal of Geriatric Psychiatry and Neurology, 14(4), 179-187. J., Keane-Hagarty, E., Salloway, S., Kupferer, S., & Wilken, C.
Research Approach: Qualitative study employing Parse's descriptive exploratory method.
Using principal components analysis, 22 items were retained and five factors were obtained which explained 59.25% of the variance.
These factors were labeled: guilt about doing wrong by the care recipient, guilt about not rising to the occasion as caregivers, guilt about self-care, guilt about neglecting other relatives, and guilt about having negative feelings towards other people.
In contrast to a similar study involving caregivers of bone marrow transplantation recipients, these caregivers reported negative perceptions.
Although outcome variables such as burden and depression have been widely analyzed in this population, guilt, an emotion frequently observed in caregivers, has not received sufficient attention in the research literature.Setting: National Cancer Institute-designated comprehensive cancer center in a major city in the southern United States. Participants: 20 patients with primary brain tumors and their caregivers. Methodologic Approach: Data collection involved a tape-recorded dialogue with caregivers using Story Theory. Appraisal and caregiving burden in family members caring for patients receiving chemotherapy.
Patient and caregiver demographic information was collected. Forgotten voices: Lessons from bereaved caregivers of persons with a brain tumor.