Needs assessment instruments for family caregivers of cancer patients receiving palliative care: a systematic review.

ABSTRACT

PURPOSE: Family caregivers of palliative cancer patients experience various supportive care needs. Appropriate self-reported instruments with robust psychological properties are required to identify these needs of family caregivers. Therefore, we conducted a systematic review to identify self-reported supportive care needs assessment instruments for family caregivers of palliative cancer patients and assess their contents, psychometric properties, and applicability. METHODS: Systematic searches were conducted in six English databases and four Chinese databases from inception to October 2020 and updated in June 2021. The instruments identified were evaluated using an 18-item checklist consisting of six domains conceptual model, content validity, reliability, construct validity, scoring and interpretation, and respondent burden and presentation. RESULTS: Six articles, describing four self-reported needs assessment instruments, were included in the review. These instruments varied significantly in terms of contents, constructs, scoring methods, and applicability. Three of these instruments were developed to assess the comprehensive supportive care needs of family caregivers, while one was specifically developed to assess the spiritual needs of family caregivers. With respect to psychometric properties, none of the instruments identified met all the criteria. Three major shortcomings were identified, namely, lack of longitudinal validity, lack of a strategy for interpreting missing data, and lack of a description of the literacy level required to understand the questions. Additionally, the instrument development processes assessed in this study lacked qualitative elements. CONCLUSIONS: End-users need to consider contents, psychometric properties, and applicability when choosing an appropriate needs assessment instrument according to individual purpose and context. Further evaluation or development of needs assessment for the family caregivers of palliative cancer patients is needed, with a particular emphasis on caregivers' perspectives.