Development of a family caregiver needs-assessment scale for end-of-life care for senility at home (FADE)

Aim: This study aimed to develop a “family caregiver needs-assessment scale for end-of-life care for senility at home” (FADE) and examine its reliability and validity. Method: A draft item pool was developed based on a literature review, and simplified to 30 items in four domains. Next, the item pool was reviewed by four visiting nurses and four researchers and refined to 15 items. A cross-sectional study was then conducted using a self-reported questionnaire. Questionnaires were sent to 2703 visiting nurses. The survey questions included participants’ basic demographic information, the importance of each item according to a modified scale, basic demographics for cases of death by senility at home, satisfaction with each item of the modified scale in an example case, and assessment of the case using the Japanese version of the Support Team Assessment Schedule (STAS-J). Internal consistency was assessed using Cronbach’s alpha. Construct validity was confirmed using confirmatory factor analysis, and correlation between the new scale and the STAS-J was used to assess criterion-related validity. Results: In total, 461 visiting nurses provided valid responses. The exploratory and confirmatory factor analyses identified 12 items from two factors: “Needs for adaptation to senility bereavement” and “Needs for essential skills in supporting a dignified death by senility.” The final model showed appropriate index values: standardized root mean residual = 0.057, Tucker–Lewis index = 0.920, Akaike information criterion = 191.6, and Bayesian information criterion = 298.2. Cronbach’s alpha for the entire scale was 0.908, and was above 0.840 for each factor. The correlation coefficient between STAS-J and the entire scale was 0.259–0.427 (p<0.001). Conclusions: The FADE scale showed acceptable internal consistency and concurrent validity. The scale can help clarify issues and desires that present themselves at home related to adaptation to senility bereavement and essential skills in supporting a dignified death by senility. Addressing these issues and desires is expected to reduce caregivers’ anxiety and burden, and means the older adults under their care may be respected and enabled to live with dignity and peace.