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

Research output: Contribution to journalReview articlepeer-review

1 Citation (Scopus)
6 Downloads (Pure)

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 date2 Aug 2021
DOIs
Publication statusPublished - 31 Aug 2021

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