Paediatric psycho-oncology is a specialized field that focuses on the emotional and psychological needs of children with cancer and their caregivers. Research on this topic is crucial as India contributes around 15% of the global paediatric cancer patients.
Communication and information sharing
Good communication is essential in paediatric oncology. Information should be adapted to the child’s age and understanding. Young children often understand simple explanations and metaphors, while adolescents are more concerned about school, appearance, and independence An article titled Information-sharing experiences of professionals looking after children with cancer: a qualitative exploration from a specialist paediatric oncology unit in India explores this topic in depth. Some key findings from this study are –
- Include children in conversations whenever possible.
- If kept away from discussion, children may ‘overhear conversations’.
- Share difficult information gradually to help families process it better.
Another article discusses the learning framework in paediatric psycho-oncology and encourages training in handling psychological aspects of paediatric cancer to make cancer care more holistic.
Caregiver support and Long-Term Wellbeing of Survivors
A child’s cancer diagnosis affects the entire family. Caregivers often experience emotional, financial, and practical difficulties.
An article titled Unmet supportive care needs of family caregivers of children with cancer in India assessed the unmet needs of the caregivers in detail. 89% of caregivers reported needing help coping with seeing their child in pain, while 73% experienced guilt about other family responsibilities.
Another similar study (click here) assessed the need for paediatric caregiver support, including emotional support for parents and caregivers. Involving extended family members can also reduce stress and improve coping
As survival rates improve, attention is shifting toward quality of life after treatment.
Some survivors of childhood leukemia experience difficulties with:
- Memory
- Attention
- Processing speed
Children diagnosed before age 8 may be at greater risk for these challenges. Regular neurocognitive assessments can help identify problems early and support successful school adjustment and daily functioning. These findings are based on a study titled Neuropsychological functioning in long-term survivors of pediatric acute lymphoblastic leukemia: A prospective cross-sectional study which can be accessed here.
Palliative Care, Bereavement, and Staff Training
Paediatric palliative care aims to improve quality of life for children with serious illnesses by addressing physical, emotional, social, and spiritual needs. According to the Global Atlas of Palliative Care, 70.8% of children receiving palliative care experience fatigue, making symptom management an important part of care and 6% of the global need for palliative care is in the paediatric age group. A study was conducted to understand the common palliative care conditions and complaints with which the children present to tertiary care hospital and it can be accessed here
Support is also needed for families coping with the loss of a child. The CANCOPE-PI needs assessment tool was developed with input from bereaved parents to provide culturally sensitive support. It focuses on areas such as emotional care, sibling support, and remembrance practices, helping families navigate grief in meaningful ways. To read more about the development of this assessment tool, click here
Healthcare professionals play a major role in providing psychosocial care. Training in communication skills, emotional support, and mental health awareness helps staff respond effectively to the needs of children and families. Because caring for seriously ill children can be emotionally demanding, healthcare teams also need support to prevent burnout and maintain compassionate, family-centered care
Childhood Cancer Survivorship and Long-term Late Effects
Although survival rates have improved, childhood cancer survivors may experience long-term effects years after treatment. The paper titled, Late effects of treatment in survivors of childhood cancer from a tertiary cancer center in South India explores the longer term outcome of childhood cancer. These include fertility problems (24.5%), growth and hormonal issues, and learning difficulties. While many report a good quality of life, concerns about employment and financial burdens remain. Age-appropriate communication is important to support survivors and their families.