Information Needs, Information Receiving and the Related Variables among Japanese Family Caregivers of Cancer Patients: In Initial Phase vs In Terminal Phase

Abstract

In Japan, family caregivers of cancer patients usually receive information on the patient from healthcare professionals before patients are told the truth. Efforts to provide suitable information to these caregivers may be crucial to improving the quality of life in family caregivers as well as in patients. A descriptive correlational study explored and assessed the information needs and the information receiving of family caregivers of cancer patients, both in initial phase and in terminal phase. Data were obtained by a semi-structured interview with a questionnaire. The categories of information assessed were disease, treatment, prognosis, and patient and family care. In addition, the demographic and situational characteristics related to individual information receiving were investigated by logistic regression analyses. In initial phase, of 66 family caregivers, about two-thirds expressed they received the disease-related information, whereas less than one-third of those felt they did not receive the care-related information. In terminal phase, among 66 family caregivers, most caregivers expressed they received the disease-related and care-related information for patients, whereas less than half of those felt they did not receive the care-related information for themselves. The caregivers who were older, who did not inform the cancer diagnosis to the patient, and whose patient had not undergone any treatment significantly more perceived that they did not receive information, although they had the needs for information. Our results may help healthcare professionals to plan the appropriate provision of information to family caregivers of cancer patients.