Abstract
Goal: The aim of this study was the development of a narrative approach program for family caregivers at home hospice. We examined the effect on quality of life (QOL) and the factors of their narrative. Methods: Ten family caregivers who were taking care of a patient with a terminal illness at home at the time of the study participated voluntarily. They received two interviews in the narrative approach, in which they narrated about one hour per interview. They completed the questionnaires about quality of life (positive emotion in Caregiver Quality of life Index-Cancer: CQOLC), Life Satisfaction, and mental health (General Health Questionnaire: GHQ). Data was analyzed by quantitative and qualitative analysis. This study was approved by the Ethical Board at St. Mary’s College. Results: The CQCLC score significantly increased (p < 0.05) and the GHQ score decreased, though not to a significant extent. Life satisfaction didn’t change because of ceiling effect. The categories about importance, changes after getting disease, hopes are selected. Conclusion: Narrative Approach may be useful to increase family caregiver’s Quality of life (positive emotions), and have the possibility to reduce mental health problems. Selected categories suggested psychological process of caregivers, and that the narrative approach might promote the recognition of positive aspects or resilience. We propose a narrative approach program as a pilot study.
Highlights
The number of aging people is expected to increase in Japan and other countries
Goal: The aim of this study was the development of a narrative approach program for family caregivers at home hospice
We examined the effect on quality of life (QOL) and the factors of their narrative
Summary
The number of aging people is expected to increase in Japan and other countries. In the United Kingdom, over 50% of adults diagnosed with a terminal illness and the majority of people who have cancer, prefer to be cared for and to die in their own home according to Jack, Baldry, Groves, Whelan, Sephton, & Gaunt (2013). There are some literatures about family caregivers in home hospice. Ascherfeld, Marx, Bokemeyer, Bergelt, & Oechsle (2017) showed that family caregivers of advanced cancer patients feel distress with sadness, sorrows and exhaustion, or anxiety and depression. Kozlov, Phongtankuel, Prigerson, Adelman, Shalvev, Czaja et al (2019) indicated that family caregivers at home hospice had moderate-to severe anxiety or symptoms. Phongtankuel, Burchett, Shalev, Adelman, Prigerson, Czaja et al (2019) expressed that family caregivers in home hospice experienced crisis like patient signs and symptoms, emotional distress, and caregiver burden. We need some kind of intervention for family caregivers
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