Uncertainty among families of patients with cerebrovascular diseases in Japan: association with quality of life and background characteristics

PURPOSE: To determine the relationship between family uncertainty and family quality of life (QOL) during the recovery period of patients with cerebrovascular disease in Japan, and the factors that influence family uncertainty. METHODS: Data were collected from copies of patient medical files and interviews with family members of 85 patients admitted to two rehabilitation wards in Japan. Family uncertainty was measured using the Japanese version of the Managing Uncertainty in Illness Scale–Family Member form (MUIS-FM) and family QOL using the World Health Organization Five Well-Being Index (WHO-5). Multiple linear regression analysis was applied to investigate associated factors. RESULTS: WHO-5 score was significantly negatively associated with MUIS-FM score (β = − 0.236, p = 0.03); other factors associated with MUIS-FM score were the Care Shared Decision-Making Questionnaire for care providers score (β = − 0.384, p < 0.001), Short Intolerance of Uncertainty Scale score (β = 0.296, p = 0.001), and history of surgical treatment (β = 0.199, p = 0.032). CONCLUSIONS: Family QOL could be improved by reducing family uncertainty. It is also suggested that promoting shared decision-making between healthcare providers and patients’ families may help reduce family uncertainty. It is necessary to take into account not only family intolerance of uncertainty but also uncertainty that varies by type of acute care provided. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s40520-022-02254-1.