Families' perception of terminal patients' prognosis awareness is associated with families' own grief: Evidence from a hospital in China

• Published in: Journal of advanced nursing 2023-07, Vol.79 (7), p.2622-2631
• Main Authors: Chen, Chuqian, Du, Lina, Cheng, Guobin, Jin, Yanyan
• Format: Article
• Language: English
• Subjects: Bereavement; Caregivers; Death & dying; Decision making; family perception; Forms; Grief; information disclosure; Mainland China; Medical prognosis; Missing data; Multiple imputation; nursing; Patients; Perceptions; Place of death; Truth
• ISSN: 0309-2402; 1365-2648
• DOI: 10.1111/jan.15595

Aim The aim of the study was to explore how families' perceptions of dying patients' prognosis awareness influence families' grief. Design A cross‐sectional design was adopted. Method Data were collected from a survey of family caregivers of deceased patients through a tertiary hospital in Mainland China between October 2018 and April 2021. One question asked about families' perceptions of patients' awareness of their prognosis, and the Chinese Grief Reaction Assessment Form was used to measure grief. A multiple linear regression with control variables was run to test the link. Missing data were handled with multiple imputation. Results A total of 181 participants were involved in the analyses. After whether the patient received professional end‐of‐life care in the last days, the place of death and several basic information variables were controlled, families' grief was more intense when they were sure that patients were unaware of the terminal prognosis compared to when they believed that patients were aware or not sure about the patient's awareness. The latter two groups did not differ significantly in grief intensity. Conclusion For Chinese family caregivers in the present study, terminal patients' awareness of their prognosis is more beneficial than harmful to their bereavement adaptation. This raises empirical concerns over the assumption that truth is harmful and the nondisclosure pattern on such a basis. Impact The findings extend knowledge on the outcomes of information disclosure from the perspective of bereaved family caregivers. Meanwhile, it informs services for the dying and the bereaved: When making decisions about prognosis disclosure to terminally ill patients, potential impacts on not only patients but also families need to be fully considered. For families who are sure that the patient was never aware of the prognosis, additional support ought to be provided to address their intense grief reactions. Patient or Public Contribution Several professional caregivers helped revise the questionnaire.