Challenges and support needs of parents and children when a parent is at end of life
Authors: Jeffrey R. Hanna, Ulster University. Prof Eilis McCaughan, Ulster University and Dr Cherith Semple, Ulster University
Keywords: Children, parents, end of life, parental cancer
Date of publication: September 2019
The ‘Family-Centred Cancer Care team at Ulster University have been leading a programme of work since 2007. The primary aim of our work is to promote positive coping for families impacted by parental cancer, across the cancer trajectory.
To date, our research has been disseminated through published peer reviewed papers, training events and local, national and international conferences.
We have also provided a freely available, interactive, evidence-based eLearning module to educate and equip healthcare professionals to support parents to communicate their cancer diagnosis with dependent children.
A few months ago, our team had a systematic review published in Palliative Medicine. The aim of this review was to gain understanding on the challenges and support needs of the family (parent(s) + dependent children, <18 years old) when a parent’s cancer progressed to end of life. Twenty-seven previous studies were included in this review. From this research, we identified families’ challenges, support needs and factors that facilitated good practice.
Blockages and barriers were identified by parents which inhibited them sharing the news with their dependent children, that Mum or Dad was dying with cancer. Often, parents felt it was protecting their children by not sharing such difficult and devastating information with their children. This was frequently impacted by parents’ denial over the severity of the illness, hope of treatments for living longer and the pain and hurt of sharing the news with the children. On the other hand, for parents who desired to share information with their children, more than often, they did not have a clear picture regarding the full extent of their illness and felt ill-equipped to discuss and prepare their children for the death of a parent. Further, many parents felt they did not have the appropriate words and language on how best share to share this pivotal information with their children. When we looked at what children wanted, the consistent message from children was they desired to be informed and kept updated on their parent’s declining health. Negative bereavement outcomes have been reported when information has been withheld from children before the death of their Mum or Dad.
Based on these findings, our research suggests a need for healthcare professionals to provide parents with honest and clear information regarding the terminal nature of their cancer, so they can appropriately communicate this with their dependent children. Our findings also identified a clear need for healthcare professionals to not only provide parents with reassurance on the importance of communication with their children but parents need to be equipped with age-appropriate language to do so.
Furthermore, our results highlighted helpful strategies for families as they navigate the challenging end of life experience. This includes, maintaining normality and routine (as best as possible) for both parents and children, such as going to school. Families reported on the desire and need to spend increased quality family time together. Also, maximising support networks inside and outside the family to help with daily routines and managing the practicalities at home. Further, our findings suggest it is helpful for children to have the permission to ‘say goodbye’ to their parent when they are actually dying to reduce feelings of loneliness and isolation.
Our review identified that studies conducted are not representative of a number of populations as most authors have recruited two parent families who attend support groups and services. Therefore, further research is required to identify the experiences and support needs of one parent families and of families with different compositions and structures and families from different socioeconomic backgrounds.
As part of this on-going programme of work we are working collaboratively with other researchers to develop guidelines for healthcare professionals on how best to facilitate family support when a parent of dependent children is at end of life, during the dying phases of the illness and the immediate bereavement period. To inform these guidelines, our team has conducted qualitative interviews with relevant professionals to explore their experiences in supporting these families. This has included specialist and generalist health and social care professionals from both acute and community sectors and funeral directors. Also, qualitative interviews have been conducted with end of life and bereaved parents to further understand the family experiences at these junctures. We hope to share these findings in peer-reviewed published papers in the coming months.