There are just nine days to go to #EAPC2023! The 18th World Congress of the European Association for Palliative Care (EAPC) is in Rotterdam on 15th to 17th June 2023. Today, we are pleased to welcome Professor Barbara Sourkes to give us an exclusive preview into her plenary lecture and to tell us more about the insight and wisdom of children* facing serious illness – as well as their healthy siblings – and how their voices need to be heard.

‘Food, toys and love are what we need to live!‘ (6-year-old patient)
‘Of all the things I ever could have chosen, having my brother get sick was not one of them‘ (10-year-old sibling).
Over the course of decades of psychotherapeutic work with children and adolescents confronting serious illness, I have often been asked: “How do you do it? It must be so depressing.” In fact, depressing is one of the few things it isn’t, for if it were, I could not continue. The words that do come to mind for me include rich, fulfilling, sad, frustrating, poignant, and always profoundly moving. The children’s voices – filled with emotion and wisdom – bring their vitality to all of us who care for them. As pediatric palliative care develops, the unique contributions of child psychology, psychiatry, and other mental health professions contribute to a truly interdisciplinary field. In furthering our understanding of children’s psychological responses to serious illness, we illuminate the touchstones that are the essence of pediatric palliative care.
In many ways, patients and their healthy siblings live the illness in mirror image: while the patient endures the physicality of the illness in all its relentless presence, the siblings are witness to its ravages. Although the siblings live the experience with the same intensity as the patient and parents, historically, they have stood outside the spotlight of attention and care. Sibling relationships are a crucial axis within the family system and the children’s mutual caring and devotion can be powerful for both. The siblings and the children with serious illness both must cope with great uncertainty, confronted with the threat, if not the actuality, of premature separation, loss, and death. Their words and images provide a portrait of the experience of living with serious illness and help us to learn from them and hence improve care for themselves and also for future patients and families. Based on decades of clinical experience and in-depth psychotherapy with these children, psychological themes include:
- the impact of the illness
- the children’s awareness of their condition (or their sibling’s)
- involvement in decision-making
- the process of anticipatory grief.
The degree of openness and candour of children’s expression is a function of individual and family psychology, level of cognitive and emotional development and the nature of the illness itself. Cultural background importantly impacts the voice of the child in decision-making. One caveat is the fact that many children whom we care for are severely neurologically impaired, nonverbal, with extremely limited capacity for interaction or awareness. The ‘voices’ of the children who are able to express themselves verbally or portray their feelings through art give us clues as to the experience of those who are unable to express themselves in a way that we understand. For these children, parents and siblings are truly the experts at ‘reading’ their distress / comfort and their astute observations form the basis for their shared decision-making.
What emerges overall through words and images is the recognition that across all life stages, from early childhood through to adulthood, the challenges of living with serious illness are universal. Although children may express themselves differently from adults, their awareness and concerns emerge with clarity and wisdom.
* this blog refers to children throughout, meaning children and young people.
Join Professor Barbara Sourkes at #EAPC2023. On Saturday, 17th June 2023 Barbara will give the Paediatric Palliative Care Plenary ‘Food, Toys and Love: The Voices of Seriously Ill Children and Their Siblings’ at the EAPC 18th World Congress. Find out more about the Congress here.
Links and resources
- Read more about the upcoming #EAPC2023 in the EAPC blog here.
- Sourkes B. Children’s Experience of Symptoms: Narratives through Words and Images. Children 2018 (Special issue: Pediatric Palliative Care)
- Sourkes B. Children’s Artwork: Its Value in Psychotherapy in Pediatric Palliative Care, (2018) in Buxton D and Jacobowski N. Child and Adolescent Psychiatric Clinics of North America, Special Issue: Dealing with Death and Dying.
- Aldridge J and Sourkes B. (2021) The Psychological Impact of Life-Limiting Conditions on the Child. In Goldman A, Haines R Rappaport A (eds) Oxford Textbook of Pediatric Palliative Care: 3d edition. London: Oxford University Press.
- Muriel, Rosenberg and Sourkes. Children’s Voices: The Experience of Patients and their Siblings. In Wolfe J, Hinds P. and Sourkes B. (eds) (2022). Interdisciplinary Pediatric Palliative Care: 2nd edition. New York: Oxford University Press
About the author
Professor Barbara Sourkes PhD is the Kriewall – Haehl Director of the Palliative Care Program at the Lucile Packard Children’s Hospital Stanford and Professor of Pediatrics at the Stanford University School of Medicine, United States of America.
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