The Physical Health of Caregivers of Children With Life-Limiting Conditions: A Systematic Review

Julie Hartley, Myra Bluebond-Langner, Bridget Candy, Jonathan Downie, Ellen M Henderson

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Abstract

CONTEXT: Parental caregiving for a child with a life-limiting condition (LLC) is complex physical and mental work. The impact of this caregiving on parents' physical health is unknown.

OBJECTIVES: (1) To review existing evidence on the physical health of parents caring for a child with a LLC and (2) to determine how physical health of parents is measured.

DATA SOURCES: Medline, Embase, PsycINFO, and Cumulative Index of Nursing and Allied Health Literature were searched.

STUDY SELECTION: Peer-reviewed articles were included if they reported primary data on the physical health of a caregiver of a child with a LLC. Studies were excluded if they described only the caregiver's mental health or if the caregivers were bereaved at the time of data collection.

DATA EXTRACTION: Of 69 335 unique citations, 81 studies were included in the review.

RESULTS: Caregiver health was negatively impacted in 84% of studies. Pain and sleep disturbance were the most common problems. Ways of measuring the physical health of caregiver varied widely. We found an absence of in-depth explorations of the social and economic contexts, which could potentially mitigate the impact of caregiving. Furthermore, we find health interventions tailored to this group remain largely unexplored.

LIMITATIONS: Studies were heterogenous in methodology, making comparisons of results across studies difficult.

CONCLUSIONS: These findings support the need for improving access to interventions aimed at improving physical health in this population. The rate of health-seeking behaviors, preventive health care access and screening for health conditions is understudied and represent important directions for further research.

Original languageEnglish
Article numbere2020014423
Pages (from-to)1-31
Number of pages31
JournalPediatrics
Volume148
Issue number2
Early online date21 Jun 2021
DOIs
Publication statusPublished - 1 Aug 2021

Bibliographical note

Funding Information:
Dr Hartley's post was supported by Great Ormond Street Children's Charity (2LGB/C) and Marie Curie Cancer Care core grant funding to the Marie Curie Palliative Care Research Department, University College London, (MCCC-FCO-11-U). Prof Bluebond-Langner's post is funded by the True Colours Trust (511830). Dr Candy's post is supported by Marie Curie Cancer Care (grant MCCC-FCO-11-U). Dr Downie's post was funded by the National Health Service. Dr Henderson's post is supported by Great Ormond Street Children's Charity (508605). This research is also supported by the National Institute for Health Research Great Ormond Street Hospital Biomedical Research Centre.

Funding Information:
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose. FUNDING: Dr Hartley’s post was supported by Great Ormond Street Children’s Charity (2LGB/C) and Marie Curie Cancer Care core grant funding to the Marie Curie Palliative Care Research Department, University College London, (MCCC-FCO-11-U). Prof Bluebond-Langner’s post is funded by the True Colours Trust (511830). Dr Candy’s post is supported by Marie Curie Cancer Care (grant MCCC-FCO-11-U). Dr Downie’s post was funded by the National Health Service. Dr Henderson’s post is supported by Great Ormond Street Children’s Charity (508605). This research is also supported by the National Institute for Health Research Great Ormond Street Hospital Biomedical Research Centre. POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose. COMPANION PAPER: Companions to this article can be found online at www.pediatrics.org/cgi/doi/10.1542/peds.2020-023358 and www.pediatrics.org/cgi/doi/10.1542/peds.2021-050222.

Publisher Copyright:
© 2021 American Academy of Pediatrics. All rights reserved.

Keywords

  • Caregivers
  • Child
  • Family Health
  • Health Status
  • Humans
  • Parents
  • Patient Acuity

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