This study's primary goal was to develop and validate a meaningful tool to assess the needs of family caregivers of the dying elderly in mainland China for home hospice care. The understanding of family caregivers' needs enables timely, accurate, and effective identification of difficulties and confusion in the caregiving process, which in turn provides a reference basis for subsequent healthcare professionals to create individualized support plans and evaluate the effectiveness of home hospice care for the dying elderly.13, 25 In addition, focused practical service direction is given based on the needs assessment results; for example, as the life care needs score increases, a guide on knowledge and skills is supplied. The tool compensates for the weaknesses of family caregivers during independent caregiving, improves the caregiving ability of family caregivers, reduces the number of re-admissions of the dying elderly, improves the quality of life of the dying elderly at home, and reduces the burden of caregiving on the family.2, 26, 27 Thus, this tool will have a significant and lasting impact on the advancement of hospice care in China.
In the initial questionnaire preparation process, the Harmony Nursing Theory was used as the theoretical framework, and reviewing Chinese and international literature and referring to related tools, helps to ensure the scientificity of the questionnaire. Through interviews with family caregivers of the dying elderly to understand their real feelings about long-term care, the breadth and depth of the item pool were enriched to ensure a more reliable expression of the questionnaire.
Screening and revision of items is a crucial part of the questionnaire development process. After collecting information from the cross-sectional survey, the critical ratio method and correlation coefficient method was used for joint screening, and a total of two items were deleted, following the results of statistical analysis can ensure the rigor of the questionnaire content. In addition to applying statistical methods, the screening of the volume items was also carried out by expert review, and the questionnaire items were modified with expert opinions, thus making the questionnaire have certain clinical practice significance. In the reliability test, the Cronbach's alpha coefficients of the total questionnaire score and all dimensions were > 0.8, indicating that the questionnaire had good internal consistency. The retest reliability of the total questionnaire was 0.868, and the retest reliabilities of all dimensions were > 0.7,24 indicating that the questionnaire has good stability across time. The CVI of each item of the questionnaire ranged from 0.83 to 1.00, and the S-CVI was 0.97,23 which was higher than the recommended values, indicating good content validity. Exploratory factor analysis extracted six male factors with a cumulative variance contribution rate of 71.281% and factor loadings of > 0.4, 22 which more comprehensively covered the needs of family caregivers at the physical, psychological, social and spiritual levels. In addition, the correlation between each dimension and the correlation between each dimension and the total score met the criteria of construct validity, which indicated that the theoretical structural model constructed in this study existed and the structure of the questionnaire was reasonable.
This study strictly adhered to the principles of questionnaire preparation and screening, with easy-to-understand questionnaire items and no more than 15 minutes to fill out the questionnaire to ensure its practicality. The family caregivers' needs assessment questionnaire for home hospice care of the dying elderly included 6 dimensions of emotional regulation needs, daily care needs, end-of-life knowledge needs, social support needs, symptom control needs and spiritual care needs, with 34 items. "Symptom control needs" reflect the caregiver's concern for the alleviation of the symptoms of the dying elderly, which can help the elderly to be comfortable, minimize pain, and pass away with dignity. "End-of-life knowledge needs" reflect that at the end of life, caregivers are more concerned about death-related information (e.g., death management) in addition to information about the disease, to prepare for irreversible death. "Spiritual care needs" and "emotional regulation needs" reflect the heavy psychological burden of caregivers, who are eager to explore the meaning of life to give them inner spiritual strength and peace of mind. "Life care needs" and "social support needs" reflect that caregivers take caring for the dying elderly as their responsibility and actively learn caregiving skills. However, the overload of caregiving makes them seek assistance from the community and family.25
Limitations of this study include the following. First, questionnaire development is a long and iterative revision process, and family caregiver needs change dynamically over time. This study was limited by human, material, and time reasons, was only validated in a community-based organization in one region, and was not conducted across time and geographic regions. The current sample size cannot represent the current situation of the needs of family caregivers of the dying elderly at home in the whole country, and a multi-region, cross-time longitudinal study is planned at a later stage to validate the applicability of the questionnaire. Second, as an assessment tool, the structural validity of the questionnaire was not validated by further validation factor analysis, and the reliability of the questionnaire needs to be validated again in the future by conducting a large-sample survey to further improve the scientific validity of the questionnaire.