End-of-life experiences of mothers with advanced cancer: perspectives of widowed fathers

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 Three hundred and forty-four 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 modeling 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 percent 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 programs devoted to addressing these issues.

End-of-life parental communication priorities among bereaved fathers due to cancer

“…Descriptions of study participants and details about the development and distribution of the survey were previously reported. [20, 21] Data were collected between October 2012 and December 2014. The current analysis focuses on the 279 men who were married to their children’s mother, had a child under the age of 18 years at the time of her death, and responded to the survey within 27 months of her death.…”

“…[23] Other validated measures included in the larger study of these men are described elsewhere. [20, 21] The survey included multiple questions about the mother’s cancer history and EOL experiences, such as location of death, presence or absence of hospice care, and prognostic awareness. Using investigator-designed questions, fathers reported on their wife’s psychological and parenting concerns at the EOL (Table 1).…”

“…[16–18] Findings from our previous studies on bereaved fathers suggest there is inadequate communication between terminally ill mothers and their families. [19, 20] A majority of widowed fathers with dependent children reported that their wife did not say goodbye to their children prior to death. [20] Given the importance of parenting roles and parenting responsibilities for dying parents, it is imperative to understand parents’ communication priorities at the EOL.…”

“…[19, 20] A majority of widowed fathers with dependent children reported that their wife did not say goodbye to their children prior to death. [20] Given the importance of parenting roles and parenting responsibilities for dying parents, it is imperative to understand parents’ communication priorities at the EOL. Yet there are no published reports on what conversations dying parents or their caregivers believe are most important.…”

Psychometric evaluation of the Texas revised inventory of grief in a sample of bereaved family caregivers

“…TRIG II has been used more extensively than TRIG I because, in many studies, the focus has been placed on the present situation rather than on the past (Holland, Futterman, Thompson, Moran, & Gallagher-Thompson, 2013;Nappa, Lundgren, & Axelsson, 2016;Ringdal, Jordhoy, Ringdal, & Kaasa, 2001). When both scales have been used, they have mainly been studied independently (BrintzenhofeSzoc, Smith, & Zabora, 1999;Gilbar & Ben-Zur, 2002;Park et al, 2016), however, in some cases they have also been combined as a total score (Yopp, Park, Edwards, Deal, & Rosenstein, 2015). Although the TRIG has been extensively used and is translated into several languages, studies on its psychometric properties have been sparse.…”