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Journal of Autism and Developmental Disorders

Gepubliceerd in:

26-09-2023 | Original Paper

Quality of Life Among Caregivers of Children with Autism Spectrum Disorder and Attention Deficit Hyperactivity Disorder: A Cross Sectional Study

Auteurs: Sari Bar, Sara B. Stephens, M. Sunil Mathew, Sarah E. Messiah, Veronica Bordes Edgar

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 11/2024

Abstract

Caregivers of children with attention deficit-hyperactivity disorder (ADHD) and autism spectrum disorder (ASD) experience more stress than caregivers of typically developing children but there is limited research evaluating caregivers’ quality of life (QoL). This study aimed to describe the association of caregiver QoL in children with ASD and/or ADHD. This study included patients with ADHD and/or ASD seen in one pediatric specialty clinic between September 2018-August 2020. Caregivers were classified as those caring for children with ASD-only, ADHD-only, or youth with both conditions (ADHD + ASD). An adapted version of the PedsQL Family Impact Module was used to measure caregiver QoL. The sample included caregivers of 931 children. The majority of these children were male (74.7%), non-Hispanic white (63.3%), and aged 6 to 12 years (57.8%). Across the groups, significant differences were observed in patient age (p < 0.0001), preferred language (p = 0.005), and insurance (p = 0.001). Caregivers of non-Hispanic Black children had 4-times the odds of reporting feeling isolated from others (OR 4.36, 95% CI 1.19-16.00 p = 0.03). Those caring for children with ADHD-only had significantly lower odds of reporting helplessness or hopelessness (OR 0.45, 95% CI 0.26-0.80, p = 0.004), and difficulty talking about their child’s health with others (OR 0.30, 95% CI 0.17-0.54, p < 0.0001). Similarly, caregivers of children who had ADHD + ASD reported higher odds of difficulty making decisions together as a family (OR 14.18, 95% CI 1.15-17.91, p=0.04) and difficulty solving family problems together (OR 45.12, 95% CI 2.70-752.87), p = 0.008). Caring for children with ADHD and/or ASD may affect caregiver QoL.

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Barroso, N. E., Mendez, L., Graziano, P. A., & Bagner, D. M. (2018). Parenting stress through the lens of different clinical groups: A systematic review & meta-analysis. Journal of Abnormal Child Psychology, 46(3), 449–461. https://doi.org/10.1007/s10802-017-0313-6.CrossRefPubMedPubMedCentral

Bordes Edgar, V., & Romero, R. A. (2020). Culture and language diversity in pediatric neuropsychology. In O. Pedraza (Ed.), Clinical cultural neuroscience. New York: Oxford University Press.

Centers for Disease Control (2022a, April). Developmental Disabilities Causes and Risk Factors Centers for Disease Control. https://www.cdc.gov/ncbddd/developmentaldisabilities/causes-and-risks-factors.html.

Centers for Disease Control (2022b, March). Data and statistics on autism spectrum disorder. Centers for Disease Controlhttps://www.cdc.gov/ncbddd/autism/data.html.

Centers for Disease Control (2022c, August). Data and statistics about ADHD Centers for Disease Control. https://www.cdc.gov/ncbddd/adhd/data.html.

Charles, S. T., Piazza, J. R., Mogle, J., Sliwinski, M. J., & Almeida, D. M. (2013). The wear and tear of daily stressors on mental health. Psychological Science, 24(5), 733–741. https://doi.org/10.1177/0956797612462222.CrossRefPubMed

Craig, F., Operto, F. F., De Giacomo, A., Margari, L., Frolli, A., Conson, M., Ivagnes, S., Monaco, M., & Margari, F. (2016). Parenting stress among parents of children with Neurodevelopmental Disorders. Psychiatry Research, 242, 121–129. https://doi.org/10.1016/j.psychres.2016.05.016.CrossRefPubMed

Fernandes, S. S., Machado, M., & Machado, F. (2015). Parental acceptance, parental stress, and quality of life: A study with parents of ADHD children. Italian Journal of Special Education for Inclusion, 3, 71–83.

Han, H. R., Kim, M. T., Rose, L., Dennison, C., Bone, L., & Hill, M. N. (2006). Effects of stressful life events in young black men with high blood pressure. Ethnicity & Disease, 16(1), 64–70.

Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43(3), 629–642. https://doi.org/10.1007/s10803-012-1604-y.CrossRefPubMed

Hours, C., Recasens, C., & Baleyte, J. M. (2022). ASD and ADHD comorbidity: what are we talking about? Frontiers in Psychiatry, 13, 154.

Jenaro, C., Flores, N., Gutiérrez-Bermejo, B., Vega, V., Pérez, C., & Cruz, M. (2020). Parental stress and family quality of life: Surveying family members of persons with intellectual disabilities. International Journal of Environmental Research and Public Health, 17(23), 9007. https://doi.org/10.3390/ijerph17239007.CrossRefPubMedPubMedCentral

Kaugars, A., Shields, C., & Brosig, C. (2018). Stress and quality of life among parents of children with congenital heart disease referred for psychological services. Congenital Heart Disease, 13(1), 72–78. https://doi.org/10.1111/chd.12547.CrossRefPubMed

Kim, J. H., & Park, E. C. (2015). Impact of socioeconomic status and subjective social class on overall and health-related quality of life. Bmc Public Health, 15, 783. https://doi.org/10.1186/s12889-015-2014-9.CrossRefPubMedPubMedCentral

Martin, C. A., Papadopoulos, N., Chellew, T., Rinehart, N. J., & Sciberras, E. (2019). Associations between parenting stress, parent mental health and child sleep problems for children with ADHD and ASD: Systematic review. Research in Developmental Disabilities, 93, 103463. https://doi.org/10.1016/j.ridd.2019.103463.CrossRefPubMed

Miranda, A., Tárraga, R., Fernández, M. I., Colomer, C., & Pastor, G. (2015). Parenting stress in families of children with Autism Spectrum disorder and ADHD. Exceptional Children, 82(1), 81–95. https://doi.org/10.1177/0014402915585479.CrossRef

Parsaei, R., Roohafza, H., Feizi, A., Sadeghi, M., & Sarrafzadegan, N. (2020). How different stressors affect quality of life: An application of Multilevel Latent Class Analysis on a large sample of Industrial Employees. Risk Management and Healthcare Policy, 13, 1261–1270. https://doi.org/10.2147/RMHP.S256800.CrossRefPubMedPubMedCentral

Piazza, J. R., Charles, S. T., Sliwinski, M. J., Mogle, J., & Almeida, D. M. (2013). Affective reactivity to daily stressors and long-term risk of reporting a chronic physical health condition. Annals of Behavioral Medicine: A Publication of the Society of Behavioral Medicine, 45(1), 110–120. https://doi.org/10.1007/s12160-012-9423-0.CrossRefPubMed

Robert, S. A., Cherepanov, D., Palta, M., Dunham, N. C., Feeny, D., & Fryback, D. G. (2009). Socioeconomic status and age variations in health-related quality of life: Results from the national health measurement study. The Journals of Gerontology Series B Psychological Sciences and Social Sciences, 64(3), 378–389. https://doi.org/10.1093/geronb/gbp012.CrossRefPubMed

Sanders, M. R., Kirby, J. N., Tellegen, C. L., & Day, T. J. (2008). Triple P-Positive parenting program as a public health approach to strengthening parenting. Journal of Family Psychology, 22(4), 506.CrossRefPubMed

Sheldrick, R. C., Neger, E. N., Shipman, D., & Perrin, E. C. (2012). Quality of life of adolescents with autism spectrum disorders: Concordance among adolescents’ self-reports, parents’ reports, and parents’ proxy reports. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment Care and Rehabilitation, 21(1), 53–57. https://doi.org/10.1007/s11136-011-9916-5.CrossRefPubMed

Theule, J., Wiener, J., Tannock, R., & Jenkins, J. M. (2013). Parenting stress in families of children with ADHD: A Meta-analysis. Journal of Emotional and Behavioral Disorders, 21(1), 3–17. https://doi.org/10.1177/1063426610387433.CrossRef

Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQL: Measurement model for the pediatric quality of life inventory. Medical Care, 37(2), 126–139. https://doi.org/10.1097/00005650-199902000-00003.CrossRefPubMed

Varni, J. W., Sherman, S. A., Burwinkle, T. M., Dickinson, P. E., & Dixon, P. (2004). The PedsQL Family Impact Module: Preliminary reliability and validity. Health and Quality of Life Outcomes, 2, 55. https://doi.org/10.1186/1477-7525-2-55.CrossRefPubMedPubMedCentral

Wolraich, M. L., Hagan, J. F., Allan, C., Chan, E., Davison, D., Earls, M., & Evans, S. W., Flinn, S., Froehlich, K., Frost, T., & Holbrook, J., J.R., H. R. Lehmann, & Okechukwu (Eds.), K., Pierce, K. L., Winner, J. D., & Zurhellen, W. (2019). Clinical practice guideline for the diagnosis, evaluation, and treatment of attention-deficit/hyperactivity disorder in children and adolescents. Pediatrics, 144(4).

World Health Organization. (2022). WHOQOL: Measuring quality of life. World Health Organization. https://www.who.int/tools/whoqol.

Titel: Quality of Life Among Caregivers of Children with Autism Spectrum Disorder and Attention Deficit Hyperactivity Disorder: A Cross Sectional Study
Auteurs: Sari Bar
Sara B. Stephens
M. Sunil Mathew
Sarah E. Messiah
Veronica Bordes Edgar
Publicatiedatum: 26-09-2023
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 11/2024
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-023-06129-w

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