Which Research Questions Are Important for the Bereaved Families of Palliative Care Cancer Patients? A Nationwide Survey

Abstract

ContextBereaved family members are present from diagnosis to the end of life and can look back and evaluate the experience; in addition, the family itself is also an important subject in the care of the patient. Therefore, although it is essential to determine the priority research issues from the viewpoint of the patients and health care workers, it is also crucial to know the important research themes from the viewpoint of the bereaved family members. ObjectivesThe purpose of this study was to identify research priorities for palliative care in Japan, based on the viewpoint of bereaved family members. Methods/DesignWe conducted a cross-sectional, self-report questionnaire survey. Content analysis was performed on free-text answers for research priorities. This study was carried out as part of the third Japan HOspice and Palliative Care Evaluation (J-HOPE3) study. ResultsWe extracted 1658 codes from the transcripts and organized them into 120 subcategories on the basis of similarity. Subcategories were then organized into eight categories as follows: <improvement in the structure of palliative care services>; <pain relief>; <communication>; <symptom management, other than pain>; <better care and assistance methods>; <publicizing and raising awareness of palliative care>; <cancer medical services>; and <knowledge, skill, and attitude of medical staff>. ConclusionThe findings of this study can be used as a research agenda for palliative care, which should take first priority in the future, and could be carried out using limited resources.