Care burden and needs assessment tool for family caregivers of elderly palliative cancer patients

Objectives With the growing demand from elderly cancer patients under palliative care at the end of life, family caregivers often face great pressure and burdens. This study aims to develop a burden and needs assessment tool for family caregivers of elderly cancer patients who receive palliative care at the end of life, and identify caregiver needs in the context of eastern culture. Methods After the literature review and two rounds of Delphi consultations from 15 palliative care, geriatric, and oncology experts, a survey questionnaire was developed to assess the care burden and needs of family caregivers of elderly cancer patients who received palliative care at the end of life. Using the convenience sampling method, a multicenter survey was conducted for family caregivers from 30 medical institutions across China, from January to November 2025. Results The final questionnaire included four dimensions and 13 items, with a Kendall coefficient of 0.319, indicating a high degree of consensus on Delphi consultations. The Kaiser-Meyer Olkin value and Bartlett test of sphericity was 0.831 and < 0.001, respectively, with a Cronbach’s α coefficient of 0.723–0.860, indicating the satisfactory reliability and validity of the questionnaire. The questionnaire included four main caregiver needs dimensions: medical decision-making needs, social support needs, spiritual and psychological needs, and life support needs. Medical decision-making needs had the highest average score among the survey participants. Conclusion The constructed care burden and needs assessment tool for family caregivers has satisfactory reliability and validity, and can be used as an evaluation tool for care needs.