Facilitating family support when a parent of dependent children is at end of life

Abstract

Introduction
Preparing dependent children for the death of a parent is one of the greatest challenges faced by parents when mum or dad is at end of life from cancer. Parents are often uncertain if, how, when they should prepare their children for the inevitable death of mum or dad. Parents often feel it is protecting their children by not telling them mum or dad is eventually going to die from cancer. Children less prepared for the death of a parent are more susceptive to poorer psychosocial adjustment in later life. Parents often require supportive guidance from health and social care professionals surrounding how best to prepare their children for the death of a parent. However, it is not clear what is provided in routine practice. This study aimed to explore how parents can be best supported, when a parent with cancer is at end of life (EOL) and has dependent children.
Methods
Following a systematic review addressing challenges and support needs of parents and children when a parent with cancer is at EOL, an interpretative qualitative study was conducted using semi-structured interviews. Four sample groups were included in this qualitative study. This included parents at EOL (n3), bereaved parents (n21), health and social care professionals (n32) and funeral directors (n23). Data was analysed using thematic analysis, guided by Braun and Clarke’s six step approach.
Results
​​​​​​​Findings highlighted the intricate challenges experienced by parents, as they prepare their children for the death of mum or dad. Key obstacles to preparing the children for the death of mum or dad included parents emotional readiness to telling them the reality of the situation, opposing parental beliefs surrounding how best to support the children when mum or dad was at EOL from cancer, and parents hope of living longer. The provision of supportive care towards parents at EOL concerning their children was often considered by most health and social care professionals as ‘not my role’. In the absence of supportive care to parents at EOL, parents sought guidance from the funeral director, surrounding how best to support the children in the acute post death period once the parent had died. Funeral directors can have an instrumental role in guiding parents through the distressing immediate bereavement period.
Conclusions
A number of recommendations are reported, that may help facilitate a better experience for parents of dependent children when mum or dad is at EOL from cancer. Key factors include a need for clear prognostic information from health and social care professionals surrounding the reality of the parent’s declining health, guidance from professionals concerning how to tell the children mum or dad is eventually going to die from cancer, and the need for parents to advance plan for the future before the parent dies. There appears to be a disparity between health and social care professionals having an awareness of the needs of parents at EOL concerning their children, and the provision of supportive care in routine practice. There is a need for health and social care professionals to recognise their pivotal role in the provision of supportive care to parents concerning their children, when mum or dad is at EOL from cancer. Policy guidelines and training should be developed for health and social care professionals and funeral directors to incorporate these appropriate aspects of care into their role.

Date of Award	Nov 2020
Original language	English
Sponsors	Department for the Economy
Supervisor	Eilis Mc Caughan (Supervisor), Cherith Semple (Supervisor) & Esther Ruth Beck (Supervisor)