Parents' Faith and Hope during the Pediatric Palliative Phase and the Association with Long-Term Parental Adjustment

Abstract

Faith was important for a minority of parents and was not associated with less long-term traumatic grief or symptoms of depression. The majority of parents remained hopeful. Hope for a cure was not associated with more long-term traumatic grief or symptoms of depression.

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.…”

“…Bereaved families depicted the role for spirituality or ritual in offering comfort or tangible coping . One study showed bereaved parents’ faith was not associated with less long‐term traumatic grief (odds ratio = 0.86, P = 0.51) or symptoms of depression (odds ratio = 0.95, P = 0.74) . Spirituality was noted to be an evolving process, as 10% of bereaved family members ( n = 99) noted themselves feeling closer to the divine, whereas 2% felt more spiritual distance …”

“…Organizational barriers to spiritual assessment included difficulty in recruitment and difficulty in accrual retention due to participants’ physical illness . In seven articles, the authors mentioned and explained bias . No included paper depicted blinding either participant or researcher.…”

“…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.…”

“…41,42,46,51,52 Only one study specifically investigated the psychosocial/spiritual needs of families of culturally diverse backgrounds. 42 Study tools included depression and anxiety scales 38,43,45,65 ; burnout 59 or burden scales 54 ; trauma, posttraumatic stress or resiliency, or grief scales 36,51,54 ; relational scales 49,54 ; benefit or coping scales 54 ; symptom inventory, illness impact, or functional assessments 49,54,55,58 ; hope scales 32,61 ; and quality-of-life metrics. 32…”