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

Jackelyn Y. Boyden, Justin Ingerman Center for Palliative Care (J.Y.B., D.L.H., R.T.N., C.F.), The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
Douglas L. Hill, Justin Ingerman Center for Palliative Care (J.Y.B., D.L.H., R.T.N., C.F.), The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
Russell T. Nye, Justin Ingerman Center for Palliative Care (J.Y.B., D.L.H., R.T.N., C.F.), The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
Kira Bona, Department of Pediatric Oncology and Division of Population Sciences (K.B.), Dana-Farber Cancer Institute, Boston, Massachusetts, USA; Harvard Medical School (K.B.), Boston, Massachusetts, USA.
Emily E. Johnston, Department of Pediatrics (E.E.J.), Division of Hematology and Oncology, University of Alabama at Birmingham, Birmingham, Alabama.
Pamela Hinds, Children's National Hospital (P.H.), Department of Nursing Science, Professional Practice & Quality, Department of Pediatrics, The George Washington University, Washington, District of Columbia, USA.
Sarah Friebert, Department of Pediatrics( S.F.), Division of Palliative Care, Akron Children's Hospital and Rebecca D. Considine Research Institute, Akron, Ohio, USA.
Tammy I. Kang, Department of Pediatrics (T.I.K.), Section of Palliative Care, Texas Children's Hospital and Baylor College of Medicine, Houston, Texas, USA.
Ross Hays, Department of Pediatrics (R.H.), Division of Bioethics and Palliative Care, University of Washington School of Medicine, Seattle, Washington, USA.
Matt Hall, Children's Hospital Association (M.H.), Lenexa, Kansas, USA.
Joanne Wolfe, Department of Psychosocial Oncology (J.W.), Dana-Farber Cancer Institute, Boston, Massachusetts, USA; Department of Pediatrics (J.W.), Boston Children's Hospital, Boston, Massachusetts, USA.
Chris Feudtner, Justin Ingerman Center for Palliative Care (J.Y.B., D.L.H., R.T.N., C.F.), The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA; Department of Pediatrics (C.F.), Medical Ethics and Health Policy, The Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania, USA. Electronic address: feudtner@email.chop.edu.

Document Type

Journal Article

Publication Date

2-1-2022

Journal

Journal of pain and symptom management

Volume

63

Issue

2

DOI

10.1016/j.jpainsymman.2021.08.004

Keywords

Financial difficulty; Parents; Patient symptoms; Pediatric palliative care; Psychological distress

Abstract

CONTEXT: 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. OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Department

Pediatrics

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