Experiences of the older spousal caregivers of patients with cancer during palliative chemotherapy: a qualitative descriptive study

BACKGROUND: Several studies have characterized the experiences of family members caring for patients undergoing chemotherapy; however, information about the experiences of older spousal caregivers with intensive caregiving burdens is unclear. Recently, more older patients have been diagnosed with cancer due to the aging population worldwide. Therefore, this study evaluated the patterns in the experiences of older spousal caregivers of patients undergoing palliative chemotherapy for advanced cancer. METHODS: Qualitative research using semi-structured interviews was used in this study involving 10 older spousal caregivers of patients undergoing palliative chemotherapy at a hospital providing advanced cancer care in Japan. The data obtained were analyzed qualitatively and inductively using thematic analysis by Braun and Clarke. RESULTS: Four themes were identified from the narratives of the participants in this study. The first theme was “getting used to living with the disease,” indicating that the older spouses gradually became accustomed to living with the patient through continued caregiving. The second theme was “deepening view of life and death,” indicating that the older spouses’ views of life and death were deepened by being confronted with patients’ quality of life until death. The third theme was “anxious about the future,” indicating the fear regarding the patient’s progressive diseases and anxiety pertaining to continuing care for the patient while dealing with their health problems. The final theme was “desire for a better rest of life,” indicating that the couple felt their bond was strengthened through caregiving and wishes to live well for the rest of their lives. CONCLUSIONS: The patterns in the experience of older spousal caregivers caring for patients undergoing palliative chemotherapy indicated an aspect of rebuilding their lives as they became accustomed to caregiving, while strengthening their marital bond. The caregiving process involved a mix of emotions, including anxiety about the spousal caregiver’s health problems worsening. However, the caregivers recognized the value of their remaining time. Therefore, they had deep concern for the patient’s comfort, concealing their feelings so that the patient would feel comfortable. This study can contribute to understanding the challenges faced and support needed by older spousal caregivers. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12904-023-01313-2.