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Cited by 62Hemoglobinopathies and Related DisordersFamily and Disability Support ResearchNursing care and research

Caregiving time in sickle cell disease: psychological effects in maternal caregivers

Moskowitz, Judith Tedlie, Butensky, Ellen, Harmatz, Paul, Vichinsky, Elliott, Heyman, Melvin B., Acree, Michael, Wrubel, Judith, Wilson, Leslie +1 more·2007·Pediatric Blood & Cancer
DOI 10.1002/pbc.20792
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Abstract

BACKGROUND: Providing home care for a child with a chronic illness can be stressful for the family. The purpose of this paper is to examine patterns of caregiving and the associated psychological impact on maternal caregivers of children with sickle cell disease (SCD). PROCEDURE: Fourteen maternal caregivers of children with SCD were interviewed as part of a larger study of maternal caregivers of children with chronic illness. Forty-four caregivers of children with HIV and 36 caregivers of healthy children were included as comparison groups. Interviews included questions regarding amount of time spent providing care for the child (technical care, non-technical care, health care management), hospitalization, emergency room visits, illness stigma, and mental health of the caregiver. RESULTS: Children with SCD had significantly lower functional status and significantly more hospitalizations in the previous 3 months than children with HIV. Caregivers of children with SCD were more likely to work full-time and had higher incomes than caregivers of children with HIV. The three caregiving groups did not differ significantly on amount of total care, although caregivers of children with SCD and caregivers of children with HIV both reported significantly more time spent in technical care than caregivers of healthy children. Despite lower functional status of the children in the SCD group, when group comparisons on caregiving time variables were adjusted for child's functional status, the differences between groups increased. This appeared to be due to the fact that caregivers in the HIV group spent more time in all caregiving categories except skin, crisis, and other care. In terms of caregiver mental health, caregivers of children with HIV and SCD had significantly higher depressive mood scores than caregivers of healthy children but the groups did not differ on caregiving burden. CONCLUSIONS: The perceived care burden of caregivers of children with SCD may be related to the unpredictable nature of the crisis care they provide. Additional attention is warranted to developing adequate resources for caregivers of children with SCD to mitigate the stress of unexpected crises.

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  • There are stress appraisals that have beneficial effects on health, or on the ability to endure the stressor, such as seeing a stressor as beneficial (benefit finding) or meaningful.

    “Importantly, there are also stress appraisals that have beneficial effects on health, or on the ability to endure the stressor, such as seeing a stressor as beneficial (benefit finding) or meaningful (Moskowitz et al., 2007).”

    From More than a feeling: A unified view of stress measurement for population science (2018) · cites this paper as Moskowitz et al., 2007

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Authors
Moskowitz, J. T., Butensky, E., Harmatz, P., Vichinsky, E., Heyman, M. B., Acree, M., Wrubel, J., Wilson, L., & Folkman, S.
Affiliations
University of California, San Francisco (US)
Corresponding author
Moskowitz, Judith Tedlie
ORCID
Venue
Pediatric Blood & Cancer
Publisher
Wiley
Published
2006-04-18
Volume
48
Issue
1
Pages
64-71
ISSN
  • 1545-5009 (ISSN-L)
  • 1545-5017
DOI
10.1002/pbc.20792
OpenAlex
W2058697755
Cited by
62
References
43
Citations by year
2026: 2 · 2025: 2 · 2024: 3 · 2023: 5 · 2022: 8 · 2021: 3 · 2020: 7 · 2019: 2 · 2018: 4 · 2016: 4 · 2015: 1 · 2014: 2 · 2013: 6 · 2012: 2
FWCI
1.25
Type
journal article
Language
en
Open access
closed
Licence
onlinelibrary.wiley.com/termsAndConditions#vor (vor)
Locations
  • Pediatric Blood & Cancer (publishedVersion)
  • PubMed (publishedVersion)
Funders
  • National Institutes of Health (5r01mh058069-04)
  • National Heart, Lung, and Blood Institute (U54HL070583)
  • National Institute of Mental Health (MH58069)
  • National Institute of Diabetes and Digestive and Kidney Diseases (K24DK060617, DK060617)
Topics
  • Health Sciences › Medicine › Genetics › Hemoglobinopathies and Related Disorders
  • Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
  • Health Sciences › Health Professions › Pharmacy › Nursing care and research
Keywords
sickle cell disease, maternal caregivers, caregiving time, caregiver mental health, depressive mood, caregiver burden, children with chronic illness, HIV, crisis care, disease stigma, hospitalization, caregiver stress
MeSH terms
Adaptation, Psychological, Adolescent, Adult, Anemia, Sickle Cell, Child, Child, Preschool, Female, Home Nursing, Hospitalization, Humans, Infant, Interviews as Topic, Male, Middle Aged, Mothers, Quality of Life, Stress, Psychological, Cohort Studies, HIV Infections, Caregivers

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