Parental spirituality in life-threatening pediatric cancer

Abstract

This study addressed parental spirituality in the context of pediatric cancer with a poor prognosis. Drawing upon previous research implementing a longitudinal grounded theory design examining parental hope, 35 parents were interviewed regarding their experiences with an emergent description of the role of spirituality in parents' daily lives. Spirituality included religious beliefs and practices, notions of a higher force or cosmos, relationship with a divine being, as well as elements emerging from meaning-making and relationships. Parental expectations of spirituality remained relatively constant across data collection time points (3-9 months postdiagnosis), although limited variation occurred relative to shifting circumstance (e.g., deterioration of the child's condition). Spirituality appeared to offer: greater acceptance of parents' inability to protect their child from harm related to her/his life-threatening illness, guidance and emotion decompression, and support from one's faith community. Recommendations for integrating spiritual assessment in clinical care practice are offered.

Spiritual assessment and spiritual care offerings as a standard of care in pediatric oncology: A recommendation informed by a systematic review of the literature

“…The studies defined spirituality through eight emerging themes identified through content analysis of direct quotes defining spirituality from each paper completed by the study team chaplain (KL) and content‐checked by the last author (MW): faith, meaning, religion, sense of the divine or a higher power, vitality and gratitude, spirituality, existential wellness, and hope. Seven studies defined spirituality in the context of faith, such as seeking healing, engaging in prayer, or participating in faith traditions . The overarching paradigm for defining spirituality focused on making meaning of the biomedical realities from diagnosis through prognosis.…”

“…Seven studies defined spirituality in the context of faith, such as seeking healing, engaging in prayer, or participating in faith traditions. 2,[32][33][34][35][36][37] The overarching paradigm for defining spirituality focused on making meaning of the biomedical realities from diagnosis through prognosis. The search for meaning included understanding illness, processing distress, and making sense of suffering.…”

“…Children with cancer and their families benefit from interdisciplinary health care that includes spiritual or existential care domains . Spiritual care involves the exploration of illness, suffering, anticipatory grief, chronic and terminal conditions, and losses as well as the search for justice, purpose, hope, resiliency, relationships, meaning, and life legacy .…”

“…The World Health Organization acknowledges that holistic care that integrates the role of faith, existential questioning, and meaning in care benefits patients and their families . Some patients and families identify that religious and spiritual beliefs support and sustain meaning and that health provider inclusion of spirituality enhances their care . The specific ways spirituality may impact a child or a family's experience with cancer diagnosis, prognosis, and treatment remains a gap in the current knowledge base, as does a summary of spirituality interventions and outcomes for children with cancer and their families.…”

“…24 Some patients and families identify that religious and spiritual beliefs support and sustain meaning and that health provider inclusion of spirituality enhances their care. 2,25,26 The specific ways spirituality may impact a child or a family's experience with cancer diagnosis, prognosis, and treatment remains a gap in the current knowledge base, as does a summary of spirituality interventions and outcomes for children with cancer and their families. To expand the scope of the previously published Standards of Psychosocial Care in pediatric oncology, 14 we performed a systematic review to quantify and qualitatively assess the practice of spiritual care in pediatric cancer.…”