Research suggests spiritual needs of children with life-threatening conditions not being met

Posted on Monday 2 June 2025

“Supporting the complete care of children, young people and families” (SPARK) project is the first national study investigating this issue. Funded by the National Institute for Health and Care Research (NIHR), its key aim was to identify how the NHS can better meet the spiritual needs of paediatric patients, and their families.  Young people, parents, healthcare professionals and chaplains took part in the study.

Suffering alone

Young people and parents spoke of struggling to make sense of what was happening to them, and why.  Many also described a deep sense of loneliness and disconnection from ‘everyday life’, leading to feelings of invisibility and insignificance, and uncertainties about the meaning and purpose of life. Fears and questions about death were often described as a constant presence. Some expressed feelings of guilt and despair. 

Crucially, most of the young people and parents involved in the study had not shared such thoughts and feelings with anyone, nor had any support with managing or resolving them. They spoke of wishing for people they could unburden their thoughts and feelings to, and to know there were people ‘walking alongside’ them as they navigated and coped with what was happening.   

Barriers

The research also identified multiple barriers to meeting the spiritual needs of children, young people and parents.  Healthcare professionals often described feeling unprepared and uncertain about allowing ‘significant conversations’, with patients and families. Some assumed that spiritual care was only relevant to those with a religious faith, or at the end of life.  

Whilst most young people and parents (religious or not) said they would welcome the opportunity to meet with a chaplain, a lack of capacity or gatekeeping meant chaplains were often less available in paediatric settings.  

Those who had been supported by a chaplain valued their compassionate and unrushed presence and being able to unburden their thoughts and feelings. Many highlighted the uniqueness of this support.

Lifting spirits through small acts and sacred spaces

Young people and parents were, however, careful to stress that spiritual care is not just about the opportunity to share unspoken thoughts, feelings and questions. Many young people and parents vividly described times when healthcare staff’s small acts of compassion and connection had lifted their spirits and lessened the sense of aloneness in their suffering.

Quiet reflection and faith spaces in hospitals also emerged as very important to some parents, including those who identified as non-religious. They were described as places of sanctuary, comfort and peace. 

Holistic care

Study lead, Professor Bryony Beresford, said: “We know that being diagnosed and living with a life-threatening or life-shortening condition threatens our spiritual well-being in multiple ways. When this happens in childhood such threats are even more acute. 

“For healthcare to be truly holistic, there needs to be greater recognition of how such conditions impact children and parents spiritually, and ways found to meet these needs.  One of the ways we’re taking this forward is by developing a training programme for paediatric staff. Funded by the Sir Halley Stewart Trust, the programme will be the first of its kind in the UK. “

The report

Published by NIHR, the full research report, “The spiritual needs and care of children and young people with life-threatening or life-shortening conditions, and parents (SPARK): a mixed-method investigation”, is available here.