The study, published in Palliative Medicine, by researchers from the Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care, examines interviews of over 100 children, family members and healthcare professionals across England and Northern Ireland.

The researchers found that many children with life-limiting conditions had questions and concerns related to spirituality, varying from a desire to connect with religion and leaving a legacy, to asking why they had these conditions.

A father of a 13-year-old with a gastrointestinal condition said of the child’s reaction to their condition: “‘why me?’ and we had a lot of anger first off… and initially we had the ‘well you lied to me, why…you know why, why me. Why, what have I done wrong?’”

Researchers also found many children continued with their daily routine and had future life plans despite their diagnosis.

A nurse added: “The teenager that died recently, I mean she was still going to do her GCSEs this summer. And she died much quicker than we thought. But no, she was definitely going to still do them.”

“Spirituality is recognised as part of palliative care for children, but there is little data available from children themselves on their spiritual needs and concerns. This study broadens our understanding of spirituality for these children and lets us look more closely at what matters to these young patients nearing the end of life.

This research formed part of the Children’s Palliative care Outcome Scale study (C-POS), which focuses on developing and implementing a new outcome measure for paediatric palliative care.