Trends in Pediatric Palliative Care Research (TPPCR) 2025; Issue #1

Professor Ulrika Kreicbergs – Louis Dundas Centre for Children’s Palliative Care, Great Ormond Street Institute of Child Health, University College London Ulrika’s work is focused on factors in the health care or family that can be avoided or modified to reduce suffering and thereby enhance quality of life for the ill child and family.

Feature Article

Dunbar, H., Hart, T., & de Vries, K. (2024). “Listen to our voice!” using co-creation and art-based methods to explore the welfare and wellbeing of siblings of children with life-limiting conditions. Emotional and Behavioural Difficulties.

Commentary

The authors of this small but still important study focuses on an often-neglected group. Siblings of children with life limiting conditions (LLC) are significantly less recognized than those of children with cancer in both community and research. This can be explained by factors such as data access, funding and societal values. Given modern treatment the number of children with LLC has increased.1 In palliative care they predominate over children with cancer, yet they stay invisible in many ways. The intention of the authors of this study is to give voice to these siblings in terms of life experiences, welfare and wellbeing. Three health organisations caring for children with LLC in the United Kingdom were involved in the study. Nine siblings aged 6-16 participated in focus groups providing workshops where they could express themselves freely verbally and in art. Three themes emerged; ‘dealing with uncertainty and stress’; ‘coping with being different’, and ‘spill over between home and school’. Not surprisingly it was found that the siblings lived with constant uncertainty and stress. This has been observed also among other siblings of children with palliative care needs, particularly among those of a brother or sister with sequelae of a trauma.2 The siblings in the current study reported death being part of their everyday life and expressed feelings of isolation reaching beyond the personal sphere. They feel alone, also in the wider community as few understand their situation. School was found to play an important part of their lives despite rarely receiving support from their teachers or peers. 

What can we do to support these vulnerable children? 

As expected, the family was found to be the main source of support for the siblings. Open communication with family members and others about illness, death and grief has been shown to mitigate psychosocial morbidity. However, in addition to families, teachers and peers need knowledge and tools to support siblings of children with palliative care needs. A path to such support not mentioned in the study can be through the Last Aid Course for Kids and Teens.3 The course has been given for adults since 2015 in several European countries, Australia and America, with positive outcomes.4 It aims to increase public awareness about death, dying and grief. Yet, for children the course has only been given and evaluated in Germany. Around 3,000 school aged children took part and nearly 2,500 responded to an inquiry. A vast majority found the course good or very good and stated they had learned something new and essential. The course was predominantly given in schools, although some teachers and parents were hesitant.3 Nonetheless, it remains that death and grief literacy can facilitate communication within and beyond family to ease the psychosocial stress and isolation of siblings of children with LLC. 

 
References

  1. Norman, P., & Fraser, L. (2014). Prevalence of life-limiting conditions in children and young people in England: time trends by area type. Health & place26, 171–179.
  2. Kreicbergs, U., Nilsson, S., Jenholt Nolbris, M., & Lövgren, M. (2022). Using Communication Tools to Explore Young Siblings’ Experiences of Having a Brother or Sister with Pediatric Palliative Care Needs. Children (Basel, Switzerland)9(5), 641.
  3. Bollig, G., Gräf, K., Gruna, H., Drexler, D., & Pothmann, R. (2024). “We Want to Talk about Death, Dying and Grief and to Learn about End-of-Life Care”-Lessons Learned from a Multi-Center Mixed-Methods Study on Last Aid Courses for Kids and Teens. Children (Basel, Switzerland)11(2), 224.
  4. Bollig, G., Brandt, F., Ciurlionis, M., & Knopf, B. (2019). Last Aid Course. An Education For All Citizens and an Ingredient of Compassionate Communities. Healthcare (Basel, Switzerland)7(1), 19.

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