Insights From Caregivers on the Impact of Pediatric Atopic Dermatitis on Families: “I’m Tired, Overwhelmed, and Feel Like I’m Failing as a Mother”
Open accessAbstract
BACKGROUND: The impact of pediatric atopic dermatitis (AD) on families is largely hidden from view, and AD is commonly misunderstood as a minor skin condition. Few studies have examined the full burden of AD from the family perspective. OBJECTIVE: The aim of the study was to assess the burden of AD on children and families using a caregiver-centered survey. METHODS: A 72-item anonymous online survey was posted on social media sites targeted to or composed of parents of children with AD. It explored the following 9 domains of impact: sleep, social isolation, time requirements, life decisions, family relationship dynamics, energy/fatigue, mental health impacts, and unmet treatment needs. Atopic dermatitis severity was reported by respondents using the Patient-Oriented Eczema Measure. Statistical analyses were conducted using R 3.6.0. RESULTS: Two hundred thirty-five individuals completed the survey during the 1-month period that it was promoted via social media. Caregivers reported frequent sleep disturbance, exhaustion, worry, and social isolation related to their child's AD. CONCLUSIONS: Results highlight the need for psychosocial support and respite care for caregivers of children with AD.
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The quality of life of parents of children with eczema is often immensely impacted.
“Given the time-consuming and exhausting nature of caring for children with eczema and the resulting adverse mental health outcomes, the quality of life of parents is often immensely impacted [20].”
Cites
The Patient-Oriented Eczema Measure
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Zuberbier, T., Orlow, S. J., Paller, A. S., Taı̈eb, A., Allen, R., Hermosa, J. M. H., Ocampo‐Candiani, J., Cox, M., Langeraar, J., & Simon, J. C. (2006) · Journal of Allergy and Clinical Immunology · doi:10.1016/j.jaci.2006.02.031 · Cited by 341 · see citing works
Effects of Atopic Dermatitis on Young American Children and Their Families
Chamlin, S. L., Frieden, I. J., Williams, M. L. K., & Chren, M. (2004) · PEDIATRICS · doi:10.1542/peds.2004-0374 · Cited by 316 · see citing works
Psychosocial adjustment in preschool children with atopic eczema.
Daud, L. R., Garralda, M. E., & David, T. J. (1993) · Archives of Disease in Childhood · doi:10.1136/adc.69.6.670 · Cited by 203 · see citing works
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Yang, E., Beck, K. M., Sekhon, S., Bhutani, T., & Koo, J. Y. M. (2018) · Pediatric Dermatology · doi:10.1111/pde.13727 · Cited by 117 · see citing works
Childhood Atopic Dermatitis Impact Scale
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Sleep Disturbance in Caregivers of Children With Respiratory and Atopic Disease
Meltzer, L. J., & Booster, G. D. (2016) · Journal of Pediatric Psychology · doi:10.1093/jpepsy/jsw016 · Cited by 54 · see citing works
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Chong, Y. Y., Kwan, J. Y. M., Yau, P. T., Cheng, H. Y., & Chien, W. T. (2023) · Healthcare · doi:10.3390/healthcare11202708 · Cited by 6 · see citing works
“Given the time-consuming and exhausting nature of caring for children with eczema and the resulting adverse mental health outcomes, the quality of life of parents is often immensely impacted [20].”
Background
- Authors
- Capozza, K., Gadd, H., Kelley, K., Russell, S., Shi, V., & Schwartz, A.
- Affiliations
- University of Arizona (US)
- University of Illinois Chicago (US)
- Corresponding author
- Capozza, Korey
- Venue
- Dermatitis
- Publisher
- SAGE Publications
- Published
- 2020-02-22
- Volume
- 31
- Issue
- 3
- Pages
- 223-227
- ISSN
- 1710-3568 (ISSN-L)
- 2162-5220
- OpenAlex
- W3007523462
- Cited by
- 62
- References
- 12
- Citations by year
- 2026: 5 · 2025: 6 · 2024: 12 · 2023: 18 · 2022: 17 · 2021: 1 · 2020: 3
- FWCI
- 7.01
- Type
- journal article
- Language
- en
- Open access
- green
- hdl.handle.net
- Licence
- cc-by
- Locations
- Dermatitis (publishedVersion)
- PubMed (publishedVersion)
- UA Campus Repository (The University of Arizona) (acceptedVersion, cc-by)
- Funders
- Sanofi
- Regeneron Pharmaceuticals
- Sanofi Genzyme
- Topics
- Health Sciences › Medicine › Dermatology › Dermatology and Skin Diseases
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Keywords
- pediatric atopic dermatitis, caregiver burden, family impact, parental stress, sleep disorders, social isolation, caregiver fatigue, mental health, psychosocial support, respite care, unmet treatment needs, Patient-Oriented Eczema Measure
- MeSH terms
- Psychosocial Support Systems, Caregiver Burden, Anxiety, Child, Child, Preschool, Dermatitis, Atopic, Family Relations, Fatigue, Female, Humans, Infant, Male, Parents, Severity of Illness Index, Sleep, Social Isolation, Time Factors, Cost of Illness, Needs Assessment
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