What paediatric palliative care means for families of children with severe neurological impairment


Sophie Ribbers, M.Sc. Psychology, is a research associate at the Pediatric Palliative Care Center, Children’s and Adolescents’ Hospital Datteln, Department of Children’s Pain Therapy and Paediatric Palliative Care, Faculty of Health, School of Medicine, Witten/Herdecke University, and Dr Mandira Reuther is a palliative care physician at the Pediatric Palliative Care Center, Children’s and Adolescents’ Hospital Datteln in Germany. Here, Sophie and Mandira explain the background to their research study and longer article published in the March issue of  ‘Palliative Medicine’ and selected as this month’s ‘Editor’s choice’. (EAPC members can download a free copy from the website).

Dr Mandira Reuther (left) and Sophie Ribbers.

We are honoured that our paper has been selected as ‘Editor’s choice’ in this Special Issue of Palliative Medicine that’s devoted to Paediatric Palliative Care.

Common knowledge exists in our society about palliative care services for adults. People are usually grateful for these services that provide support in difficult situations. But it’s often a completely different story when it comes to palliative care services for children. Many people find the thought of children dying before their parents so disturbing that they want nothing to do with this topic. As a result, paediatric palliative care does not receive nearly as much attention as adult services do. This urgently needs to change!

In our qualitative study, we focused on the largest group of paediatric palliative care patients – children with severe neurological impairment. These patients often fall through the cracks, as most research focuses on children with cancer.1 We aimed to give a voice to these children that cannot speak for themselves by interviewing their parents and professional caregivers, and tried to understand how the provision of palliative care affects them and their families.

We discovered that palliative care services influence the child’s symptoms, the families’ respite and support, normalcy, feeling of security, empowerment and the way they cope with the disease. But just stating these overall outcome domains does not do justice to the meaning they have for families.

We found that the involvement of palliative care services may fundamentally change the child’s health status:

“We agree, my husband and I, […] that if we had not come here, she probably wouldn’t be with us anymore, her health issues would have gotten out of control. […] She has become a whole different child. She is present […] and is also going to school again.”

 Not only the child’s situation, but also the family’s everyday life was fundamentally influenced:

“At this point in our daily life we sometimes even think, “What are we going to do today?“ […] we can spend time as a couple again. I can go shopping without being in a hurry (laughs) and that’s something so normal for other people. And for me it’s so beautiful to have regained that.”

Furthermore, interviews showed that families were pleasantly surprised by their experiences with palliative care services and that the general expectations of those not involved in such services were inaccurate:

“There is so much life here [on the paediatric palliative care unit]. […] normally you expect silence, sorrow […] We experienced quickly that that is not at all the case. When a child dies, certainly that’s different, but there is so much life here, so much laughter, dancing, singing.”

Clinicians and researchers have fun at EAPC congresses – Sophie and Mandira pictured at the photo booth of the 16th EAPC World Congress in Berlin…

Overall, paediatric palliative care is certainly a sensitive and at times devastating topic but it also brings with it so much joy, life and laughter. Providing high-quality paediatric palliative care may not change the life of as many (palliative diagnoses being less common in children than adults) but for those affected, it may change everything. We are honoured to be able to contribute to advancing this field a bit further and are delighted that our paper has been selected as ‘Editor’s choice’.

We are currently preparing a manuscript describing the development and validation of an outcome tool that is based on the outcome domains identified in this study. Thus, we hope to provide a tool that contributes to the provision of high-quality paediatric palliative care.

  1. Namisango E, Bristowe K, Allsop MJ, et al. Symptoms and concerns among children and young people with life-limiting and life-threatening conditions: A systematic review highlighting meaningful health outcomes. The Patient-Patient-Centered Outcomes Research. 2018: 1-41.

This post relates to the longer article,Core Outcome Domains of Pediatric Palliative Care for Children with Severe Neurological Impairment and Their Families: A Qualitative Interview Study” by Sophie Ribbers, Julia Wager, Almut Hartenstein-Pinter, Boris Zernikow and Mandira Reuther published in Palliative Medicine 202034 (3). Article first published online 4 November 2019: https://doi.org/10.1177/0269216319885818. Issue published: March 2020.



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This entry was posted in CHILDREN'S PALLIATIVE CARE, EAPC-LINKED JOURNALS, Palliative Medicine: Editor's Choice, RESEARCH. Bookmark the permalink.

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