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

Author:

Hartley Julie123,Bluebond-Langner Myra14,Candy Bridget2,Downie Jonathan56,Henderson Ellen M1

Affiliation:

1. Louis Dundas Centre for Children’s Palliative Care, University College London Great Ormond Street Institute of Child Health

2. Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, United Kingdom

3. Department of Women and Children’s Health, King’s College London, London, United Kingdom

4. Department of Sociology, Anthropology and Criminal Justice, Rutgers University-Camden, Camden, New Jersey, New Jersey

5. Louis Dundas Centre for Children’s Palliative Care, Great Ormond Street Hospital, National Health System Foundation Trust, London, United Kingdom

6. Paediatric Supportive and Palliative Care Team, Royal Hospital for Children, Glasgow, United Kingdom

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.

Publisher

American Academy of Pediatrics (AAP)

Subject

Pediatrics, Perinatology, and Child Health

Reference143 articles.

1. Estimating the current and future prevalence of life-limiting conditions in children in England [published online ahead of print December 15, 2020];Fraser;Palliat Med

2. Fraser Together for Short Lives. A guide to children's palliative care, fourth edition. LK, Miller M, Aldridge J, McKinney PA, Parslow RC. Prevalence of life-limiting and life-threatening conditions in young adults in England 2000–2010: final report for Together for Short Lives. 2013. Available at: https://www.togetherforshortlives.org.uk/wp-content/uploads/2018/01/ExRes-Prevalence-of-Life-limiting-and-life-threatening-briefing.pdf. Accessed June 6, 2021

3. Advances and challenges in European paediatric palliative care;Fraser;Medical Sciences,2020

4. Specialist paediatric palliative care services: what are the benefits?;Mitchell;Arch Dis Child,2017

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