Qualitative exploration of Japanese rural citizens’ consideration of terminal home care through an educational forum

Abstract Background The need for home care services for older adults is gradually increasing in many countries. In the past, Japanese older adults typically died at home, but the current trend is toward hospital death. Few studies in Japan have explored peoples’ viewpoint on home care, however, especially in rural areas. Therefore, we clarified Japanese rural residents’ views of terminal home care. Methods We conducted a qualitative study of 152 participants who are current or potential caregivers of older adults and who live in the city of Unnan, Shimane Prefecture, which has a large elderly population. An educational forum consisting of presentations and a workshop were used to provide information on terminal home care to rural citizens. A thematic analysis of the workshop's content regarding participants’ perceived difficulties related to terminal home care was conducted. Results Participants described four themes regarding problems of terminal home care: medical aspects, care burden, health care system, and patient problems. Besides the need for more knowledge of the medical and health system, participants were anxious about the burden of care on their lives and the perceptions of others in their community. Conclusion This study is the first report on Japanese rural citizens’ views of terminal home care. The findings suggest that the limited use of home care in Japanese rural areas might relate to a lack of understanding of terminal home care and health care systems, a substantial care burden for caregivers, and conflicts between patients and families.