A National Profile of Families and Caregivers of Children With Disabilities and/or Medical Complexity
Copyright © 2022 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved..
OBJECTIVE: Provide an up-to-date description of the well-being of families and caregivers of children with disability and medical complexity at the national level.
METHODS: We performed a secondary analysis of the 2016-2019 National Survey of Children's Health and divided the sample based on a child's disability and medical complexity status: children with no special health care needs (non-CSHCN), children with special health care needs (CSHCN), CSHCN with significant disabilities (CSHCN-SD), and children with medical complexity (CMC). Outcomes included survey items assessing 1) caregiver emotional well-being, 2) family functioning, and 3) economic adversity. We conducted multivariable logistic regression analyses to examine associations between child disability and medical complexity status with study outcomes.
RESULTS: Among 131,774 survey responses, CSHCN-SD (weighted n = 4.2 million) and CMC (n =1.1 million) disproportionately reported adverse outcomes for every measure of well-being. Notably, caregivers of CSHCN-SD and CMC were more likely to report frequently feeling bothered (aOR 5.0 and 6.3, respectively) and angry (aOR 3.0 and 3.1) with their child than non-CSHCN caregivers. Families of CSHCN-SD and CMC had 40% lower odds of endorsing all aspects of family resilience and more likely to report three or more adverse childhood experiences (aOR 3.3 and 3.7) than non-CSHCN families. CSHCN-SD and CMC families were also more likely to experience difficulty covering basics (aOR, 2.6 and 3.3) and report caregivers changing jobs due to their child's care (aOR, 3.1 and 5.0).
CONCLUSIONS: Development and testing of interventions specifically targeting the well-being of CSHCN-SD and CMC families and caregivers is needed.
| Errataetall: |
CommentIn: J Pediatr Urol. 2023 Oct;19(5):659-661. - PMID 37393158 |
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| Medienart: |
E-Artikel |
| Erscheinungsjahr: |
2022 |
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| Erschienen: |
2022 |
| Enthalten in: |
Zur Gesamtaufnahme - volume:22 |
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| Enthalten in: |
Academic pediatrics - 22(2022), 8 vom: 25. Nov., Seite 1489-1498 |
| Sprache: |
Englisch |
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| Beteiligte Personen: |
Yu, Justin A [VerfasserIn] |
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| Links: |
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| Themen: |
Caregiver well-being |
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| Anmerkungen: |
Date Completed 15.11.2022 Date Revised 30.10.2023 published: Print-Electronic CommentIn: J Pediatr Urol. 2023 Oct;19(5):659-661. - PMID 37393158 Citation Status MEDLINE |
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| doi: |
10.1016/j.acap.2022.08.004 |
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| funding: |
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| Förderinstitution / Projekttitel: |
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| 500 | |a CommentIn: J Pediatr Urol. 2023 Oct;19(5):659-661. - PMID 37393158 | ||
| 500 | |a Citation Status MEDLINE | ||
| 520 | |a Copyright © 2022 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved. | ||
| 520 | |a OBJECTIVE: Provide an up-to-date description of the well-being of families and caregivers of children with disability and medical complexity at the national level | ||
| 520 | |a METHODS: We performed a secondary analysis of the 2016-2019 National Survey of Children's Health and divided the sample based on a child's disability and medical complexity status: children with no special health care needs (non-CSHCN), children with special health care needs (CSHCN), CSHCN with significant disabilities (CSHCN-SD), and children with medical complexity (CMC). Outcomes included survey items assessing 1) caregiver emotional well-being, 2) family functioning, and 3) economic adversity. We conducted multivariable logistic regression analyses to examine associations between child disability and medical complexity status with study outcomes | ||
| 520 | |a RESULTS: Among 131,774 survey responses, CSHCN-SD (weighted n = 4.2 million) and CMC (n =1.1 million) disproportionately reported adverse outcomes for every measure of well-being. Notably, caregivers of CSHCN-SD and CMC were more likely to report frequently feeling bothered (aOR 5.0 and 6.3, respectively) and angry (aOR 3.0 and 3.1) with their child than non-CSHCN caregivers. Families of CSHCN-SD and CMC had 40% lower odds of endorsing all aspects of family resilience and more likely to report three or more adverse childhood experiences (aOR 3.3 and 3.7) than non-CSHCN families. CSHCN-SD and CMC families were also more likely to experience difficulty covering basics (aOR, 2.6 and 3.3) and report caregivers changing jobs due to their child's care (aOR, 3.1 and 5.0) | ||
| 520 | |a CONCLUSIONS: Development and testing of interventions specifically targeting the well-being of CSHCN-SD and CMC families and caregivers is needed | ||
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| 700 | 1 | |a Houtrow, Amy J |e verfasserin |4 aut | |
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