Hannah Scott from the Cicely Saunders Institute discusses work with the Children’s Palliative care Outcome Scale study (C-POS) that focuses on developing and implementing a new outcome measure for paediatric palliative care.
‘I think sometimes when we say spiritual needs we look more at the religious side, but that does not always reflect spiritual needs’ (oncology nurse)
We know from adult palliative care that outcome measures can have a hugely positive impact on care provision, shared decision-making, symptom management, and patient quality of life. But what can nursing professionals do when no one-size-fits-all model exists for child patients?
When my colleague Lucy Coombes, a paediatric palliative care clinical nurse specialist, conducted a systematic review into outcome measures for children with life-limiting conditions, she found there was no ‘ideal’ measure that could used for all children. The approaches were either too generic – having been developed for a healthy population – or too disease-specific, meaning they couldn’t be used by all children with any condition.
Our research team at the Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation at King’s College London have been working on the Children’s Palliative care Outcome Scale study (C-POS), which focuses on developing and implementing a new outcome measure for paediatric palliative care.
The C-POS study started with the aim of developing and validating a new measure that would be able to be used by any child with any life-limiting or life-threatening condition.
This began with a qualitative interview study to identify the things most important to children and their families to start to work out what should be included in the measures. The World Health Organization’s domains of palliative care are physical symptoms, emotional concerns, social concerns, and spiritual concerns, so these were used those as the starting points in the interviews to ask about what was important.
As part of this work, we conducted over 100 interviews with children, their family members, and health and social care professionals, to better understand what is important to children and young people with life-limiting and life-threatening conditions. This included their spiritual, religious, and existential concerns, which we explored in a recent paper.
When coding some of the interview transcripts, I thought it was interesting how many parents said that their children did not have spiritual concerns or just answered in terms of religion and similarly healthcare professionals said themselves that they often tended to only ask about the religious aspects. However, when coding the transcripts from children, they spoke a lot about spiritual and existential concerns but in terms of things that gave their lives meaning or in terms of uncertainties and unpredictabilities. It was clear that children had these concerns, but they were not necessarily recognised.
This led us to ask, how can nursing professionals deliver spiritual care for children with life-limiting and life-threatening conditions and their families?
Spirituality for dying children and young people is often discussed in terms of the losses they face relating to their sense of normality. It’s also been defined as that which addresses and resolves spiritual or existential distress, such as fear or questions like ‘why me?’, as well as supporting them to find meaning and explore their legacy. So spiritual care should be about supporting children and families with meaning-making and redefining hope. Whether that is in a religious sense or not, this also means recognising the importance of maintaining a sense of normality in the delivery of spiritual care for children and young people with life-limiting and life-threatening conditions.
‘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’ (nurse)
In our study, the specific spiritual concerns among children with life-limiting conditions and their families (parents and siblings) included: living life to the fullest; meaning of life and leaving a legacy; uncertainty about the future; determination to survive; accepting or fighting the future, and the role of religion (as both a source of support and conflict).
We also found the importance of maintaining a sense of normality and meaning making were core components of spiritual wellbeing for these children. Enabling and supporting children to continue to engage in activities that were important to them and that gave their lives meaning such as taking part in their hobbies, going to school, and seeing friends and family were particularly important for them to be able live life to the fullest.
‘Well, I’m happy because I get better, but then I’m sad because I miss school, miss my friends, miss my family’ (child aged 12 with a respiratory condition)
Instead of directly asking if children and their families have spiritual or existential concerns, nursing professionals may wish to shape discussions about spiritual and existential needs in a different way; by framing the conversation in terms of what matters to the child, and what they value in terms of their usual routines. By asking them to talk about their lives, as well as any future and spiritual or existential concerns in this context, professionals may be able build confidence in talking about and addressing these concerns.
Nursing professionals can work with children and their families to identify the things that are most important to them and that give their lives meaning and set achievable goals that can support a meaningful life and legacy for these children. Through collaboration health and social care professionals can better deliver spiritual care for children and young people with life-limiting and life-threatening conditions.
Hannah Scott is research assistant at the Cicely Saunders Institute, King’s College London.
Scott HM, Coombes L, Braybrook D, et al. Spiritual, religious, and existential concerns of children and young people with life-limiting and life-threatening conditions: A qualitative interview study. Palliative Medicine. 2023;37(6):856-865. https://pubmed.ncbi.nlm.nih.gov/36978266/