Licensed from: AdobeStock 173005510
While spiritual care is recognized as a core domain of palliative care, there are very few research studies that directly address spiritual care in pediatric palliative care. The following definition by Puchalski, 2009 is one of the most accepted definitions in adult populations:
“Spirituality is the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred.” But, spirituality in children and the extent to which this definition applies is less well understood.
To address this lack of research, Scott (2023) and colleagues sought to identify and describe the components of spiritual care for children with life-limiting and life-threatening conditions. The specific research question was, “What are the core spiritual, existential and religious concerns of children, young people and their families when facing life-threatening or terminal illness?”
The study included semi-structured interviews with children (aged 5-17) with any life-limiting condition, their parents, caregivers, siblings and health care providers. Study participants were recruited from six hospitals and three children’s hospices in England and Northern Ireland.
Interviews included demographic questions as well as questions about children’s hobbies and interests. Open-ended questions, developed from a systematic review, were asked and various methods including ‘draw and talk’ and play methods were used to collect information from children. Interviews were audio-recorded, transcribed verbatim and pseudonymized. The transcripts were then coded and analyzed quantitatively.
A total of 106 participants, including 26 children, completed interviews. The identified spiritual concerns 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 role of religion.
The analysis revealed seven themes related to three dimensions of the spiritual domain of care:
- Personal Values
- Understanding the spiritual domain of care
- Living life to the fullest
- Existential Concerns
- Meaning of life and leaving a legacy
- Uncertainty of the future
- Determination to survive
- Accepting or fighting the future
- Faith and Beliefs
- Role of religion
Some of the themes were consistent with what is already known, while some new important themes emerged. It was particularly important for children to live life to the fullest by continuing to engage in activities that were important to them and that gave their lives meaning. Such activities included taking part in hobbies, attending school and visiting friends and family.
This study expands knowledge of the spiritual domain for children with life-limiting conditions beyond religious needs to include existential and value-based spiritual concerns. Further, this study provides support for health care providers to optimize the well-being of children receiving palliative care by working with children to identify things that provide meaning and developing a plan to achieve them.
Source: Scott, H. M., Coombes, L., Braybrook, D., Roach, A., Harðardóttir, D., Bristowe, K., … & Harding, R. (2023). Spiritual, religious, and existential concerns of children and young people with life-limiting and life-threatening conditions: A qualitative interview study. Palliative Medicine, 02692163231165101.
