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End‐of‐life experiences of family caregivers of deceased patients with cancer: A nation‐wide survey

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Objectives The purpose of this study was (a) to describe the end‐of‐life experience of family caregivers of cancer patients, (b) to describe talking about death and dying of the patient to minor children, and (c) to examine the association of family caregivers' experiences by their characteristics and talking about death and dying of the patient. Methods A cross‐sectional nationwide survey of bereaved family caregivers was conducted. In total, 968 questionnaires were sent to bereaved family caregivers, and 711 were completed and returned. Fifty‐three responses indicating patients had minor children were analyzed. Univariate analysis and principal component analysis were performed. Results Family caregivers' experiences were divided into 3 domains by principal component analysis: protect children from the patient's imminent death, little regard for the children, and worry and concern about the children's emotional reaction. Family caregivers' common experiences were as follows: “I wanted to know how the children felt,” “I wanted to avoid making the children confused,” and “I did not have much time to talk with and/or play with the children.” About 30% of family caregivers reported that they “did not talk” about death and dying of patients to minor children. Spouses of patients and family caregivers who did not talk about death tended to experience distress and worry. Conclusions Most family caregivers experienced worry and fear regarding minor children's emotional reaction; therefore, clinicians need to explain children's emotional and psychological reactions to family caregivers when a patient is at the end‐of‐life.