Abstract
This cohort study investigated factors associated with 336 Taiwanese family caregivers’ emotional and cognitive preparedness for death of a loved one with terminal cancer. Caregivers’ death-preparedness states (no-death-preparedness [as reference], cognitive-death-preparedness-only, emotional-death-preparedness-only, and sufficient-death-preparedness states) were previously identified. Associations of factors with these states were determined by a hierarchical generalized linear model. Financial hardship decreased caregivers’ likelihood for the emotional-death-preparedness-only and sufficient-death-preparedness states. Physician prognostic disclosure increased membership in the cognitive-death-preparedness-only and sufficient-death-preparedness states. The better the quality of the patient-caregiver relationship, the higher the odds for the emotional-death-preparedness-only and sufficient-death-preparedness states, whereas the greater the tendency for caregivers to communicate end-of-life issues with their loved one, the lower the odds for emotional-death-preparedness-only state membership. Stronger coping capacity increased membership in the emotional-death-preparedness-only state, but perceived social support was not associated with state membership. Providing effective interventions tailored to at-risk family caregivers’ specific needs may facilitate their death preparedness.
Acknowledgement
Language Editor: Erica Light
Authorship
All authors contributed substantially to each step of research implementation. The corresponding author takes responsibility for the content of the manuscript, has full access to all of the data in the study, and is responsible for the integrity of the data, the accuracy of the data analysis, including and especially any adverse effects.
Author disclaimers
The views expressed in this article do not communicate an official position of the funding sources.
Disclosure statement
No potential conflict of interest was reported by the author(s).
Data availability statement
The sharing of anonymized data from this study is restricted due to ethical and legal constrictions. Data contains sensitive personal health information, which is protected under The Personal Data Protection Act, thus making all data requests subject to IRB approval. Per CGMH IRB, the data that support the findings of this study are restricted for transmission to those outside the primary investigative team. Data sharing with investigators outside the team requires IRB approval. All requests for anonymized data will be reviewed by the research team and then submitted to the CGMH IRB for approval.
Code availability
Specifications for codes of hierarchical generalized linear modeling for statistical analyses are available from the corresponding and the first authors upon reasonable request.
Chang Gung Memorial Hospital, Linkou; Ministry of Science and Technology, Taiwan; National Health Research Institutes, Taiwan.