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Cited by 148Palliative and Oncologic CareGrief, Bereavement, and Mental HealthPalliative Care and End-of-Life Issues

Parents' Experiences of Pediatric Palliative Care and the Impact on Long-Term Parental Grief

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van der Geest, Ivana M.M., Darlington, Anne-Sophie E., Streng, Isabelle C., Michiels, Erna M.C., Pieters, Rob, van den Heuvel-Eibrink, Marry M.·2014·Journal of Pain and Symptom Management
DOI 10.1016/j.jpainsymman.2013.07.007
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Abstract

Context Approximately 25% of children diagnosed with cancer eventually die. Losing a child puts parents at increased risk for developing psychological problems.Objectives To explore parents' perceptions of the interaction with health care professionals (communication, continuity of care, and parental involvement) and symptom management during the pediatric palliative phase, and to investigate the influence on long-term grief in parents who lost a child to cancer.Methods A total of 89 parents of 57 children who died of cancer between 2000 and 2004 participated in this retrospective cross-sectional study by completing a set of questionnaires measuring grief (Inventory of Traumatic Grief), parents' perceptions of the interaction with health care professionals (communication, continuity of care, and parental involvement), and symptom management during the palliative phase. Care was assessed on a five point Likert scale (1=disagree and 5=agree).Results Parents highly rated communication (4.6±0.6), continuity of care (4.3±0.6), and parental involvement (4.6±0.7) during the palliative phase. Parents' most often reported physical and psychological symptoms of their child during the palliative phase were fatigue (75%), pain (74%), anxiety to be alone (52%), and anger (48%). Higher ratings of parents on communication (β=-9.08, P=0.03) and continuity of care (β=-11.74, P=0.01) were associated with lower levels of long-term parental grief. The severity of the child's dyspnea (β=2.96, P=0.05), anxiety to be alone (β=4.52, P<0.01), anxiety about the future (β=5.02, P<0.01), anger (β=4.90, P<0.01), and uncontrolled pain (β=6.60, P<0.01) were associated with higher levels of long-term parental grief. Multivariate models combining the interaction with health care professionals and symptom management showed a significant influence of both aspects on long-term parental grief.Conclusion Both interaction with health care professionals, especially communication and continuity of care, and symptom management in children dying of cancer are associated with long-term parental grief levels.

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  • Bereaved parental anxiety and quality of life scales correlate with level of child anxiety and pain at end of life.

    “Bereaved parental anxiety and quality of life scales have correlated with level of child anxiety and pain at end of life,[19–22]”

    From Palliative Care as a Standard of Care in Pediatric Oncology (2015) · cites this paper as [20]

    The Results section (page unavailable) associates the child’s anxiety about the future, anxiety about being alone, and uncontrolled pain with higher long-term parental grief. The Measurement Instruments section identifies the parental outcome as an Inventory of Traumatic Grief score, not parental anxiety or quality-of-life scales; the Discussion also distinguishes uncontrolled pain from pain severity. (LLM, conf=0.87)

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  • Early integration of palliative care as a standard has potential to improve long-term family wellness outcomes.

    “implying early integration of palliative care as a standard of care has potential to improve long-term family wellness outcomes.”

    From Palliative Care as a Standard of Care in Pediatric Oncology (2015) · cites this paper as [20]

    The Introduction describes an integrated model of pediatric palliative care, and the Conclusion associates better communication and continuity during the palliative phase with lower long-term parental grief. The study did not test whether making palliative care an early standard of care improves outcomes, and its measured outcome was parental grief rather than family wellness broadly. Page numbers are not available in our copy. (LLM, conf=0.84)

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Research works printed but not linked: 1

  1. [17]17. American Academy of Pediatrics. Committee on Bioethics and Committee on Hospital Care. Pallia- tive care for children. Pediatrics 2000;106:351e357.

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Authors
van der Geest, I. M. M., Darlington, A.-S. E., Streng, I. C., Michiels, E. M. C., Pieters, R., & van den Heuvel-Eibrink, M. M.
Affiliations
  • University of Southampton (GB)
  • Erasmus MC - Sophia Children’s Hospital (NL)
ORCID
Venue
Journal of Pain and Symptom Management
Publisher
Elsevier BV
Published
2014-06
Volume
47
Issue
6
Pages
1043-1053
ISSN
0885-3924 (ISSN-L)
DOI
10.1016/j.jpainsymman.2013.07.007
OpenAlex
W1970210961
Semantic Scholar
96a7d674f6cc5a8e100a6f207ffec26cc3745bdc
Cited by
148
References
46
Citations by year
2026: 6 · 2025: 7 · 2024: 8 · 2023: 10 · 2022: 7 · 2021: 14 · 2020: 17 · 2019: 16 · 2018: 15 · 2017: 15 · 2016: 15 · 2015: 14 · 2014: 3
FWCI
10.91
Type
journal article
Language
en
Open access
Licence
Locations
  • Journal of Pain and Symptom Management (publishedVersion)
  • PubMed (publishedVersion)
  • EUR Research Repository (Erasmus University Rotterdam) (submittedVersion)
  • ePrints Soton (University of Southampton) (submittedVersion)
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
  • Social Sciences › Psychology › Clinical Psychology › Grief, Bereavement, and Mental Health
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
Keywords
pediatric palliative care, parental grief, childhood cancer, bereavement, parent-physician communication, continuity of care, parental involvement, symptom management, dyspnea, pain, anxiety, anger
MeSH terms
Adult, Communication, Continuity of Patient Care, Cross-Sectional Studies, Female, Grief, Humans, Male, Middle Aged, Neoplasms, Palliative Care, Parents, Pediatrics, Surveys and Questionnaires, Retrospective Studies, Multivariate Analysis

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