title: Elevated burden for caregivers of children with persistent asthma and a developmental disability.
abstract: To evaluate how having a child with both persistent asthma and a developmental disability (DD) affects caregiver burden and quality of life (QOL). 3-10 year old children with persistent asthma in urban Rochester, NY. Cross-sectional baseline survey (2006-2009). Parent report of autism spectrum disorder or other behavioral disorder requiring medication. Caregiver burden and QOL as measured by scores on previously validated depression, parenting confidence, and asthma-related QOL scales as well as an assessment of competing demands on the caregiver. Bivariate and multivariate regression analyses controlling for caregiver age, education, marital status, race, ethnicity, and child asthma symptom severity. We enrolled 530 children as part of a larger study (response rate: 74; 63 % Black, 73 % Medicaid). Of this sample, 70 children (13 %) were defined as having a DD. There were no differences in asthma symptom severity between children with and without a DD diagnosis. However, even after adjusting for potential confounders, caregivers of children with a DD reported worse scores on the depression (p = .003), parenting confidence (p < .001), and competing demands (p = .013) scales and worse asthma-related QOL (p = .035) compared to caregivers of typically developing children with asthma. Despite having similar asthma symptom severity, caregivers of children with both persistent asthma and a DD diagnosis report more burden and lower QOL compared to that of caregivers of typically developing children and persistent asthma. Further attention to this subgroup is needed to promote optimal support for caregivers.
authors.affiliation: Department of Pediatrics, University of Rochester, Box # 777, 601 Elmwood Avenue, Rochester, NY, 14642, USA, Alanakoe@Buffalo.edu.
authors.forename: Alana D
authors.initials: AD
authors.lastname: Koehler
authors.forename: Maria
authors.initials: M
authors.lastname: Fagnano
authors.forename: Guillermo
authors.initials: G
authors.lastname: Montes
authors.forename: Jill S
authors.initials: JS
authors.lastname: Halterman
mesh_terms: D001741:Black or African American / Q000706:statistics & numerical data; D001249:Asthma / Q000453:epidemiology*; D001289:Attention Deficit Disorder with Hyperactivity / Q000453:epidemiology; D000067877:Autism Spectrum Disorder / Q000453:epidemiology; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002653:Child Behavior Disorders / Q000453:epidemiology; D002675:Child, Preschool; D015897:Comorbidity; D003430:Cross-Sectional Studies; D003863:Depression / Q000453:epidemiology / Q000209:etiology*; D002658:Developmental Disabilities / Q000453:epidemiology*; D005260:Female; D006801:Humans; D007348:Insurance, Health / Q000145:classification / Q000191:economics; D008297:Male; D009518:New York / Q000453:epidemiology; D016487:Parenting / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D012720:Severity of Illness Index; D012959:Socioeconomic Factors; D044465:White People