Addressing the gap in children’s palliative care

It was refreshing to see articles addressing experiences and end-of-life psychological support for cancer patients in the November issue of The Psychologist, as this is an area often sidelined in public discourse. However, it is important to recognise that discussions around death and dying extend beyond adults or those diagnosed with cancer.

In the UK alone, approximately 3,500 infants, children, and young people die every year. Tragically, about 60 per cent of these children die before reaching their first birthday, with a significant and increasing number facing life-limiting or life-threatening conditions that require specialised palliative care.

While there has been a growing body of research on adult end-of-life psychosocial support there remains a notable gap in the literature, particularly within psychology, regarding children's palliative and end-of-life care and, even more so, bereavement services.

This gap is particularly concerning, as research in this field is crucial for developing evidence-based approaches to care and psychosocial support that are tailored to the unique needs of children and their families during what is often an incredibly traumatic and isolating time.

Notable initiatives from organisations including the Association for Paediatric Palliative Medicine and The CoPPAR network and various collaborative research groups across the children's palliative care sector are beginning to address these gaps. They focus on improving services for children while also providing critical bereavement support for families.

At Shooting Star Children's Hospices where I serve as the research lead, we are actively engaged in paediatric palliative care research, aiming to integrate psychological end-of-life and bereavement support into the broader framework of care. One of our studies has explored the sibling grief, acknowledging that the death of a child profoundly impacts the entire family unit (Kammin & Tilley, 2013).

The grief experienced following the death of a child has been shown to be more intense and long-lasting than in other forms of loss, often leading to prolonged mental health difficulties for both parents and siblings.

This underscores the urgent need for research into developing effective support systems for families who have lost a child, especially in cases of sudden and unexpected death. Additionally, the experiences of fathers of children with life-limiting conditions remain largely overlooked in both research and practice, despite the profound impact these experiences have on family dynamics and grief processes.

In conclusion, while adult end-of-life care and bereavement have received substantial attention in both psychosocial research and policy, the needs of children with life-limiting conditions and their families remain under-explored.

As we continue to raise awareness and engage in discussions around difficult topics in psychology, it is critical that we broaden our focus to include the experiences of children and their families within palliative care and post-bereavement support. Future research must address these often overlooked areas to ensure that families receive the evidence-based and comprehensive care they deserve during these deeply challenging times.

Dr Jolanta Golan 
Research Fellow 
Shooting Star Children's Hospices