Trends in Palliative Care Research 2019; Issue #7

Commentary by Prubjot Gill, PedPalASCNET Student Librarian

Feature Articles: Verberne, L. M., Kars, M. C., Schouten-van Meeteren, A. Y. N., van den Bergh, E. M. M., Bosman, D. K., Colenbrander, D. A., Grootenhuis, M. A., & van Delden, J. J. M. (2019). Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study. European Journal of Pediatrics.

Mitchell, S., Spry, J. L., Hill, E., Coad, J., Dale, J., & Plunkett, A. (2019). Parental experiences of end of life care decision-making for children with life-limiting conditions in the paediatric intensive care unit: A qualitative interview study. BMJ Open, 9(5).

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End-of-life decision-making for parents who have a child with a life-limiting condition is a stressful experience, and it is a complex topic with many facets that should be considered by healthcare professionals when communicating with parents. These considerations include parents’ emotions and experiences while providing care for their child, coping strategies utilized when navigating their situation, and parents’ decision-making process for end-of-life care for their child. For this month’s commentary, I will be focusing on two articles that address these issues.  

The first article is a qualitative study by Verberne et. al, ‘Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study’. The study’s objectives were to develop a clearer understanding of the experiences and coping strategies of parents with a child in palliative care, with the goal of better aligning healthcare professionals’ support measures with parental needs. Forty-two parents of 24 children who were receiving palliative care were interviewed for the study. The most oft-reported parental experiences included: ongoing anxiety of losing a child, a sense of loss and related grief, ambiguity towards uncertainty, preserving a meaningful relationship with their child, and tension around the end-of-life decision-making process and engagement with healthcare professionals. In regard to coping strategies, four closely related themes were discovered, including: suppressing emotions, finding support, taking control to arrange optimal care, and accepting and adapting to ongoing changes during the palliative care process.

This study’s insightful findings can help healthcare professionals provide tailored support to parents making End-of-Life decisions for their child. Parents who are caring for a child in palliative care are under a lot of stress and are experiencing a myriad of emotions related to providing end-of-life care for their child.  Some parents will find navigating this process a heavy burden, and need adequate support and guidance from healthcare professionals. To provide tailored support, healthcare professionals need to understand parents’ experiences, parent-child relationships, and their coping strategies.

The second article is also a qualitative interview study, by Mitchell et. al, ‘Parental experiences of end of life care decision-making for children with life-limiting conditions in the paediatric intensive care unit: A qualitative interview study’. Like the first article, Mitchell et. al focuses on parental experiences of end-of-life care decision-making for children with life-limiting conditions. However, this study includes interviews with parents of children who had died in the PICU in the last 12 months. Seventeen parents of 11 children were interviewed and five themes emerged: 1) parents have extensive knowledge and experiences that inform the decision-making process; 2) having trusting relationships with healthcare professionals is key to supporting parents who are making end-of-life decisions; 3) both verbal and non-verbal communication with healthcare professionals are important and can impact the family experience; 4) the process of engaging in end-of-life care decision-making is emotional and overwhelming, but can become possible if parents are able to reach acceptance; 5) families perceive benefits to receiving end-of-life care for their child in the PICU.

It is interesting how some of the findings of Mitchell et. al’s study overlap with the findings of Verberne et. al’s study. For example, both studies identified the end-of-life care period to be emotionally overwhelming, filled with anxiety and strong emotions. Additionally, both studies identified how having trusting relationships with healthcare professionals can go a long way to impact the family’s experience positively, and how the communication between healthcare professionals and parents is essential in providing support during this process. Healthcare practitioners should keep these key findings in mind as they seek to build relationships with parents built on mutual trust and support.

Overall, the end-of-life care decision-making process is complex and ambiguous for parents who are experiencing a sense of impending loss. It is also a complex journey for healthcare professionals who must navigate this road while providing optimal palliative care and building trusting relationships with parents and caregivers. In the future, I would like to see more studies that specifically focus on the child’s experience while receiving palliative care, and the coping strategies pediatric patients employ in the process.