A diagnosis of cancer in a child brings an immediate shift in focus towards treatment protocols, investigations, and clinical outcomes. While these are essential, they represent only one dimension of care. An equally important, yet often overlooked question is what does the child and their family need beyond disease-directed treatment?

In clinical practice, it becomes evident that children experience far more than physical symptoms. Pain, fatigue, and other treatment-related effects are routinely addressed, but psychological distress, uncertainty, and emotional burden often remain less visible. Families, meanwhile, navigate not only medical decisions but also social disruption, financial strain, and the emotional weight of caregiving. These gaps are rarely due to lack of intent rather, they reflect limitations in how care systems are currently structured.

Pediatric palliative care is frequently misconceived as care reserved for advanced or end-of-life stages. In reality, it is intended to be integrated early, alongside curative treatment, with the goal of improving quality of life across the disease trajectory.

To better understand these unmet needs, we conducted a scoping review examining the palliative care needs of children with cancer and their families across four domains: physical, psychological, social, and spiritual. By synthesizing evidence from diverse studies, we aimed to construct a more comprehensive understanding of the lived experience of illness.

Our findings revealed a consistent pattern. Physical symptoms particularly pain were the most frequently reported and addressed. However, psychological needs, including anxiety, fear, and uncertainty about the future, were substantial yet inconsistently managed. Adolescents, in particular, faced challenges related to identity, autonomy, and disruption of normal developmental trajectories.

Social needs were equally prominent. Illness often interrupts education, alters peer relationships, and reshapes family roles. Caregivers frequently experience emotional exhaustion and financial pressures, yet structured support for these challenges is not uniformly embedded within care delivery.

The most underrepresented domain was spiritual care. Questions related to meaning, hope, and existential concerns were seldom explored in the literature, despite their clear relevance to the experience of serious illness.

One of the key insights from this work was that many of these needs are not deliberately overlooked they are simply not systematically identified or addressed within routine oncology care. As a result, care often remains symptom-focused and episodic, rather than holistic and continuous.

These findings underscore the need for earlier and more integrated approaches to pediatric palliative care. Effective care must extend beyond symptom control to include psychological support, caregiver support, and attention to the broader context of the child’s life. Interdisciplinary collaboration is essential to achieve this.

Ultimately, improving outcomes in pediatric oncology requires more than advances in treatment alone. It requires a commitment to understanding and addressing the full spectrum of needs experienced by children and their families. Treating the disease is critical but ensuring quality of life throughout the illness journey is equally fundamental.

Reference 

Lewandowska A. The needs of parents of children suffering from cancer—continuation of research. Children. 2022;9(2):144.

Lövgren M, Udo C, Alvariza A, Kreicbergs U. Much is left unspoken: Self-reports from families in pediatric oncology. Pediatric Blood & Cancer. 2020;67(12):e28735.

Borrescio-Higa F, Valdés N. The psychosocial burden of families with childhood blood cancer. International Journal of Environmental Research and Public Health. 2022;19(1):599.

Taub S, Macauley R. Early and often: Promoting early integration of pediatric palliative care for seriously ill children with cancer. Current Problems in Cancer. 2023;47(5):101023.

Klages KL, James RN, Kain ZN, Phipps S, Alberts NM, Fortier MA. Biopsychosocial risk factors for pain in early phases of pediatric cancer treatment. Frontiers in Psychology. 2025;16:1507560.