The family caregiver needs assessment questionnaire for home hospice care of the dying elderly in Mainland China: Tool development and psychometric evaluation

Abstract

Background As care moves from disease-centered to family-centered, meeting the needs of caregivers becomes more and more important. The existence of many unmet needs of family caregivers is mainly related to the lack of effective needs assessment tools. The goal of the study was to develop and validate a family caregiver needs assessment questionnaire for home hospice care of the dying elderly in Mainland China. Method Based on the guidance of Harmony Nursing Theory, 48 initial questionnaire items were initially drafted through literature review, reference to the maturity needs tool, interviews with 12 family caregivers of the dying elderly, and group discussions among research team members. Two rounds of expert review and small sample testing resulted in a 36-item prediction questionnaire. From May to August 2023, 223 family caregivers of the dying elderly in Jinzhou City, Liaoning Province were selected to verify the questionnaire. The validation process included (1) further screening of 34 items using item analysis and (2) psychometric techniques for reliability and validity analysis. Results The final questionnaire included 34 items. With a cumulative variance contribution rate of 71.281%, the exploratory factor analysis identified six common factors: emotional regulation needs, life care needs, end-of-life knowledge needs, social support needs, symptom control needs, and spiritual care needs. The questionnaire's total Cronbach coefficient was 0.910, and the retest reliability was 0.868. Its content validity index was 0.982, and the items' content validity index ranged from 0.83 to 1.00. Conclusions The questionnaire items compilation and screening methods are scientifically reliable, have strong reliability and validity. In the future, healthcare providers can utilize the questionnaire to fully assess the needs of family caregivers of elderly patients who are dying at home with hospice care.