Article Text
Abstract
Objective Despite the importance of parenting-related responsibilities for adult patients with terminal illnesses who have dependent children, little is known about the psychological concerns of dying parents and their families at the end of life (EOL). The aim of this study was to elicit widowed fathers’ perspectives on how parental status may have influenced the EOL experiences of mothers with advanced cancer.
Subjects 344 men identified themselves through an open-access educational website as widowed fathers who had lost a spouse to cancer and were raising dependent children.
Methods Participants completed a web-based survey about their wife's EOL experience and cancer history, and their own depression (Center for Epidemiologic Studies Depression Scale, CES-D) and bereavement (Texas Revised Inventory of Grief, TRIG) symptoms. Descriptive statistics, Fisher's exact tests, and linear regression modelling were used to evaluate relationships between variables.
Results According to fathers, 38% of mothers had not said goodbye to their children before death and 26% were not at all ‘at peace with dying.’ Ninety per cent of widowed fathers reported that their spouse was worried about the strain on their children at the EOL. Fathers who reported clearer prognostic communication between wife and physician had lower CES-D and TRIG scores.
Conclusions To improve EOL care for seriously ill patients and their families, we must understand the concerns of parents with dependent children. These data underscore the importance of parenting-related worries in this population and the need for additional clinical and research programmes devoted to addressing these issues.
- Family management
- Cancer
- Bereavement
- Terminal care
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Footnotes
Contributors EMP, JMY, DLR were responsible for the study concept and design. EMP, JMY, DLR, AMD, TE acquired the data. All authors were involved in the analysis and interpretation of data. EMP drafted the manuscript and all authors revised it critically for important intellectual content. EMP is the guarantor.
Funding The project described was supported by the University Cancer Research Fund of North Carolina and the National Center for Advancing Translational Sciences (NCATS), National Institutes of Health, through Grant Award Numbers 1UL1TR001111 and 1KL2TR001109. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.
Competing interests None declared.
Ethics approval University of North Carolina at Chapel Hill Institutional Review Board.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement Additional unpublished data from the study is available to the primary study team via a secure server.