Quality of Dying Among Institutionalised Nursing Home Residents From the Caregivers' Perspective: A Mixed-Methods Study

AimsTo examine how family caregivers of deceased nursing home residents scored and justified their ratings for each item on the Quality of Dying in Long-Term Care scale and to identify the consistencies and discrepancies between their perceptions and the scores assigned when assessing the residents' end-of-life experience. DesignA convergent mixed-methods design, comprising a cross-sectional study and a thematic analysis for quantitative and qualitative phases, respectively. MethodsQuantitative and qualitative data were collected simultaneously between May 2018 and February 2019. The two sets of data were analysed separately. For the quantitative component, family caregivers completed the quality of dying in long-term care scale and a single-item question assessing the final month of the residents' life. Descriptive statistics, Mann-Whitney U-tests for comparative analyses and Spearman's correlations were applied to the quantitative data, while deductive thematic analysis was conducted for the qualitative data obtained through semi-structured interviews. ResultsSixty-nine family caregivers completed the QoD-LTC, and 11 participated in qualitative interviews. The mean overall QoD-LTC score was 39.29 (SD = 7.58). The highest-rated domain was 'Personhood' (M = 4.32; SD = 0.68), while the lowest was 'Preparatory Tasks' (M = 2.66; SD = 1.26). Interviewed family caregivers reported effective management of pain and other symptoms, satisfaction with the care provided and respectful and appropriate treatment. However, they identified significant shortcomings in communication concerning end-of-life issues, coping with death and advance care planning. Residents with cognitive impairment had significantly lower scores on the 'closure' (p < 0.01) and 'preparatory tasks' (p = 0.03) domains as well as on the overall QoD-LTC score (p = 0.01). Conclusions and ImplicationsThe findings demonstrate consistency between the quantitative and qualitative data, with high scores reported across most domains of the QoD-LTC scale, with the exception of the 'Preparatory Tasks' domain. Cognitive impairment among residents was associated with lower perceived quality of the dying process from the perspective of family members.Clinical RelevanceAspects related to closure and preparatory tasks were often overlooked. Strategies to enhance end-of-life communication and advance care planning are needed.Reporting MethodThe study adhered to the EQUATOR guidelines. The Mixed Methods Reporting in Rehabilitation & Health Sciences (MMR-RHS) checklist for mixed-methods studies, the STROBE checklist for cross-sectional studies, and the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines for qualitative studies were used for reporting.Patient or Public ContributionNo funding was received for the completion of this study.