Seeing the Arcane in the Mundane: The Spiritual as Lived by Ill Children

Abstract

Children with serious illnesses experience life disruptions that are of consequence to long-term health and development. The spiritual is integral to health, yet many healthcare providers claim a lack of understanding and comfort with attending to spiritual issues in practice. This hermeneutic phenomenological inquiry explores spirituality as lived by children with cancer and cystic fibrosis and highlights the importance of spirituality in the provision of holistic child healthcare. Four children aged nine to fourteen from each illness group (six males and two females) were interviewed and asked to draw pictures, forming the primary data for interpretation. Conversations with family members were also included in the analysis as supplements to the primary data. Study findings offer insights into children’s lived experiences of the spiritual. They reveal unmet spiritual needs and unique ways of living the spiritual that often went unrecognized by adults. The experiences shared were profound and deeply meaningful, revealing hidden wondering and wisdom that defies contemporary views of how children understand and deal with the complexity of living with serious illness. Findings provide more nuanced understandings of the spiritual that allow for the voices and emotions of children to be heard, revealing a sense of struggle and the need to find meaning in illness with all its disruptions and demands on time and freedom. Findings also reveal the meanings in relationships that sustained children in their efforts to live well with illness. These findings provide possibilities for viewing child health differently—a view that includes the spiritual and its implications—that can lead to a more conscious awareness, wisdom, and sensitivity in practice. Findings offer ways of engaging children in conversations about illness meanings and the spiritual that recognize the complexity in language and the need for alternate strategies to mine the depths of experiences that are often hidden. Because the spiritual does not always wait for experts to arrive, findings are relevant to all healthcare providers and caregivers of ill children. Implications for interprofessional research, education, and practice are also explored, providing possibilities for seeing, exploring, and living the spiritual in our practices of caring for ill children.