Pediatric Palliative Care Parents’ Distress, Financial Difficulty, and Child Symptoms

• Published in: Journal of pain and symptom management Vol. 63; no. 2; pp. 271 - 282
• Main Authors: Boyden, Jackelyn Y., Hill, Douglas L., Nye, Russell T., Bona, Kira, Johnston, Emily E., Hinds, Pamela, Friebert, Sarah, Kang, Tammy I., Hays, Ross, Hall, Matt, Wolfe, Joanne, Feudtner, Chris
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01-02-2022; Elsevier Limited
• Subjects: Child; Children & youth; Children's hospitals; Cohort analysis; Cross-Sectional Studies; Families & family life; Family; Financial difficulty; Humans; Palliative Care; Parents; Parents & parenting; Patient symptoms; Pediatric palliative care; Pediatrics; Prospective Studies; Psychological distress; Relative association; Stress, Psychological - epidemiology; Symptom management; Symptoms; Patient symptoms; Psychological distress; Financial difficulty; Pediatric palliative care; Parents
• ISSN: 0885-3924; 1873-6513; 1873-6513
• DOI: 10.1016/j.jpainsymman.2021.08.004

Parents of patients with a serious illness experience psychological distress, which impacts parents’ wellbeing and, potentially, their ability to care for their children. Parent psychological distress may be influenced by children's symptom burden and by families’ financial difficulty.
This study examined the associations among parent psychological distress, parent-reported patient symptoms, and financial difficulty, seeking to determine the relative association of financial difficulty and of patient symptoms to parent psychological distress.
Cross-sectional study of baseline data for 601 parents of 532 pediatric palliative care patients enrolled in a prospective cohort study conducted at seven US children's hospitals. Data included self-reported parent psychological distress and parent report of child's symptoms and family financial difficulty. We used ordinary least squares multiple regressions to examine the association between psychological distress and symptom score, between psychological distress and financial difficulty, and whether the degree of financial difficulty modified the relationship between psychological distress and symptom score.
The majority of parents were moderately to severely distressed (69%) or severely distressed (17%) and experienced some degree of financial difficulty (65%). While children's symptom scores and family financial difficulty together explained more of the variance in parental psychological distress than either variable alone, parental distress was associated more strongly, and to a larger degree, with financial difficulty than with symptom scores alone.
Parent psychological distress was associated with parent-reported patient symptoms and financial difficulty. Future work should examine these relationships longitudinally, and whether interventions to improve symptom management and ameliorate financial difficulties improve parental outcomes.