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.
Similar content being viewed by others
References
Boyle, C. A., Boulet, S., Schieve, L. A., Cohen, R. A., Blumberg, S. J., Yeargin-Allsopp, M., et al. (2011). Trends in the prevalence of developmental disabilities in US children, 1997–2008. Pediatrics, 127(6), 1034–1042.
Schieve, L. A., Gonzalez, V., Boulet, S. L., Visser, S. N., Rice, C. E., Van Naarden Braun, K., et al. (2012). Concurrent medical conditions and health care use and needs among children with learning and behavioral developmental disabilities, National Health Interview Survey, 2006–2010. Research in Developmental Disabilities, 33(2), 467–476.
Akinbami, L. J., Moorman, J. E., Garbe, P. L., & Sondik, E. J. (2009). Status of childhood asthma in the United States, 1980–2007. Pediatrics, 123, S131–S145.
Becker, K. G. (2007). Autism, asthma, inflammation, and the hygiene hypothesis. Medical Hypotheses, 69(4), 731–740.
Becker, K. G., & Schultz, S. T. (2010). Similarities in features of autism and asthma and a possible link to acetaminophen use. Medical Hypotheses, 74(1), 7–11.
Pak, L., Allen, P. J. (2012). The impact of maternal depression on children with asthma. Pediatric Nursing, 38(1):11–9, 30.
Wade, S., Weil, C., Holden, G., Mitchell, H., Evans, R., 3rd, Kruszon-Moran, D., et al. (1997). Psychosocial characteristics of inner-city children with asthma: a description of the NCICAS psychosocial protocol. National Cooperative Inner-City Asthma Study. Pediatric Pulmonology, 24(4), 263–276.
Feldman, J. M., Acosta Perez, E., Canino, G., McQuaid, E. L., Goodwin, R. D., & Ortega, A. N. (2011). The role of caregiver major depression in the relationship between anxiety disorders and asthma attacks in island Puerto Rican youth and young adults. The Journal of Nervous and Mental Disease, 199(5), 313–318.
Halterman, J. S., Yoos, H. L., Conn, K. M., Callahan, P. M., Montes, G., Neely, T. L., et al. (2004). The impact of childhood asthma on parental quality of life. Journal of Asthma, 41(6), 645–653.
Almansour, M. A., Alateeq, M. A., Alzahrani, M. K., Algeffari, M. A., & Alhomaidan, H. T. (2013). Depression and anxiety among parents and caregivers of autistic spectral disorder children. Neurosciences, 18(1), 58–63.
Rao, P. A., & Beidel, D. C. (2009). The impact of children with high-functioning autism on parental stress, sibling adjustment, and family functioning. Behavior Modification, 33(4), 437–451.
Singer, G. H. (2006). Meta-analysis of comparative studies of depression in mothers of children with and without developmental disabilities. American Journal of Mental Retardation, 111(3), 155–169.
Hinojosa, M. S., Hinojosa, R., Fernandez-Baca, D., Knapp, C., & Thompson, L. A. (2012). Parental strain, parental health, and community characteristics among children with attention deficit-hyperactivity disorder. Academic Pediatrics, 12(6), 502–508.
Zuckerman, B. S., & Beardslee, W. R. (1987). Maternal depression: A concern for pediatricians. Pediatrics, 79(1), 110–117.
Gump, B. B., Reihman, J., Stewart, P., Lonky, E., Darvill, T., Granger, D. A., et al. (2009). Trajectories of maternal depressive symptoms over her child’s life span: Relation to adrenocortical, cardiovascular, emotional functioning in children. Development and Psychopathology, 21(1), 207–225.
Duarte, C. S., Shen, S., Wu, P., & Must, A. (2012). Maternal depression and child BMI: longitudinal findings from a US sample. Pediatric Obesity, 7(2), 124–133.
Larson, K., Russ, S. A., Crall, J. J., & Halfon, N. (2008). Influence of multiple social risks on children’s health. Pediatrics, 121(2), 337–344.
Fagnano, M., Berkman, E., Wiesenthal, E., Butz, A., & Halterman, J. S. (2012). Depression among caregivers of children with asthma and its impact on communication with health care providers. Public Health, 126(12), 1051–1057.
Weil, C. M., Wade, S. L., Bauman, L. J., Lynn, H., Mitchell, H., & Lavigne, J. (1999). The relationship between psychosocial factors and asthma morbidity in inner-city children with asthma. Pediatrics, 104(6), 1274–1280.
Bartlett, S. J., Kolodner, K., Butz, A. M., Eggleston, P., Malveaux, F. J., & Rand, C. S. (2001). Maternal depressive symptoms and emergency department use among inner-city children with asthma. Archives of Pediatrics and Adolescent Medicine, 155(3), 347–353.
Bender, B., & Zhang, L. (2008). Negative affect, medication adherence, and asthma control in children. The Journal of Allergy and Clinical Immunology, 122(3), 490–495.
Bartlett, S. J., Krishnan, J. A., Riekert, K. A., Butz, A. M., Malveaux, F. J., & Rand, C. S. (2004). Maternal depressive symptoms and adherence to therapy in inner-city children with asthma. Pediatrics, 113(2), 229–237.
Akinbami, L. J., Moorman, J. E., & Liu, X. (2011). Asthma prevalence, health care use, and mortality: United States, 2005–2009. National Center for Health Statistics Report, 12(32), 1–14.
Halterman, J. S., Auinger, P., Conn, K. M., Lynch, K., Yoos, H. L., & Szilagyi, P. G. (2007). Inadequate therapy and poor symptom control among children with asthma: Findings from a multistate sample. Ambulatory Pediatrics, 7(2), 153–159.
Akinbami, L. J., LaFleur, B. J., & Schoendorf, K. C. (2002). Racial and income disparities in childhood asthma in the United States. Ambulatory Pediatrics, 2(5), 382–387.
Wright, J. D., Schillinger, E. F., Cazier, F., Nouali, H., Mercier, A., & Beaugard, C. (2004). A field evaluation of a piezo-optical dosimeter for environmental monitoring of nitrogen dioxide. Journal of Environmental Monitoring, 6(6), 576–582.
Murray, L., Arteche, A., Fearon, P., Halligan, S., Goodyer, I., & Cooper, P. (2011). Maternal postnatal depression and the development of depression in offspring up to 16 years of age. Journal of the American Academy of Child and Adolescent Psychiatry, 50(5), 460–470.
Goodman, S. H., Rouse, M. H., Connell, A. M., Broth, M. R., Hall, C. M., & Heyward, D. (2011). Maternal depression and child psychopathology: A meta-analytic review. Clinical Child and Family Psychology Review, 14(1), 1–27.
Kersten-Alvarez, L. E., Hosman, C. M., Riksen-Walraven, J. M., van Doesum, K. T., Smeekens, S., & Hoefnagels, C. (2012). Early school outcomes for children of postpartum depressed mothers: Comparison with a community sample. Child Psychiatry and Human Development, 43(2), 201–218.
Fletcher, R. J., Feeman, E., Garfield, C., & Vimpani, G. (2011). The effects of early paternal depression on children’s development. The Medical Journal of Australia, 195(11–12), 685–689.
Galera, C., Cote, S. M., Bouvard, M. P., Pingault, J. B., Melchior, M., Michel, G., et al. (2011). Early risk factors for hyperactivity-impulsivity and inattention trajectories from age 17 months to 8 years. Archives of General Psychiatry, 68(12), 1267–1275.
Korhonen, M., Luoma, I., Salmelin, R., & Tamminen, T. (2012). A longitudinal study of maternal prenatal, postnatal and concurrent depressive symptoms and adolescent well-being. Journal of Affective Disorders, 136(3), 680–692.
Halterman, J. S., Szilagyi, P. G., Fisher, S. G., Fagnano, M., Tremblay, P., Conn, K. M., et al. (2011). Randomized controlled trial to improve care for urban children with asthma: Results of the School-Based Asthma Therapy trial. Archives of Pediatrics & Adolescent Medicine, 165(3), 262–268.
Perrin, J. M., Coury, D. L., Hyman, S. L., Cole, L., Reynolds, A. M., & Clemons, T. (2012). Complementary and alternative medicine use in a large pediatric autism sample. Pediatrics, 130(Suppl 2), S77–S82.
Hall, S. E., & Riccio, C. A. (2012). Complementary and alternative treatment use for autism spectrum disorders. Complementary Therapies in Clinical Practice, 18(3), 159–163.
Anagnostou, E., & Hansen, R. (2011). Medical treatment overview: Traditional and novel psycho-pharmacological and complementary and alternative medications. Current Opinion in Pediatrics, 23(6), 621–627.
Warren, Z., Veenstra-VanderWeele. J., Stone, W., Bruzek, J. L., Nahmias, A. S., Foss-Feig, J. H., et al. (2011). Therapies for children with autism spectrum disorders. Rockville, MD: Agency for Healthcare Research and Quality (US), 2011 April. Report No.: Contract No.: 11-EHC029-EF.
Hanson, E., Kalish, L. A., Bunce, E., Curtis, C., McDaniel, S., Ware, J., et al. (2007). Use of complementary and alternative medicine among children diagnosed with autism spectrum disorder. Journal of Autism and Developmental Disorders, 37(4), 628–636.
Kessler, R. C., Andrews, G., Colpe, L. J., Hiripi, E., Mroczek, D. K., Normand, S. L., et al. (2002). Short screening scales to monitor population prevalences and trends in non-specific psychological distress. Psychological Medicine, 32(6), 959–976.
Statistics ABo. Information paper: Use of the Kessler Psychological Distress Scale in ABS Health Surveys, Australia, 2007–2008. 2012 04/04/2012. Report No.: 4817.0.55.001.
Juniper, E. F., Guyatt, G. H., Feeny, D. H., Ferrie, P. J., Griffith, L. E., & Townsend, M. (1996). Measuring quality of life in parents of children with asthma. Quality of Life Research, 5(1), 27–34.
Abidin, R. R. (1995). Parenting stress index (3rd ed.). Odessa, FL: Psychological Assessment Resources, Inc.
Wu, A. C., Smith, L., Bokhour, B., Hohman, K. H., & Lieu, T. A. (2008). Racial/ethnic variation in parent perceptions of asthma. Ambulatory Pediatrics, 8(2), 89–97.
Gortmaker, S. L., Walker, D. K., Weitzman, M., & Sobol, A. M. (1990). Chronic conditions, socioeconomic risks, and behavioral problems in children and adolescents. Pediatrics, 85(3), 267–276.
Silver, E. J., Warman, K. L., & Stein, R. E. (2005). The relationship of caretaker anxiety to children’s asthma morbidity and acute care utilization. The Journal of Asthma, 42(5), 379–383.
Kring, S. R., Greenberg, J. S., & Seltzer, M. M. (2010). The impact of health problems on behavior problems in adolescents and adults with autism spectrum disorders: Implications for maternal burden. Social Work in Mental Health, 8(1), 54–71.
Anastopoulos, A. D., Guevremont, D. C., Shelton, T. L., & DuPaul, G. J. (1992). Parenting stress among families of children with attention deficit hyperactivity disorder. Journal of Abnormal Child Psychology, 20(5), 503–520.
Expert panel report III: Guidelines for the diagnosis and management of asthma. NIH publication No. 07-4051. Bethesda, MD: US Department of Health and Human Services; National Institute of Health; National Heart, Lung, and Blood Institute; National Asthma Education and Prevention Program, 2007.
Benowitz, N. L. (1996). Cotinine as a biomarker of environmental tobacco smoke exposure. Epidemiologic Reviews, 18(2), 188–204.
Moffitt, T. E. (2002). Teen-aged mothers in contemporary Britain. Journal of Child Psychology and Psychiatry, 43(6), 727–742.
Lee, Y., Fagan, J., & Chen, W. Y. (2012). Do late adolescent fathers have more depressive symptoms than older fathers? Journal of Youth and Adolescence, 41(10), 1366–1381.
Quinlivan, J. A., Tan, L. H., Steele, A., & Black, K. (2004). Impact of demographic factors, early family relationships and depressive symptomatology in teenage pregnancy. Australian and New Zealand Journal of Psychiatry, 38(4), 197–203.
Ertel, K. A., Rich-Edwards, J. W., & Koenen, K. C. (2011). Maternal depression in the United States: Nationally representative rates and risks. Journal of Women’s Health, 20(11), 1609–1617.
Blacher, J., & McIntyre, L. L. (2006). Syndrome specificity and behavioural disorders in young adults with intellectual disability: Cultural differences in family impact. Journal of Intellectual Disability, 50(Pt 3), 184–198.
Valenca, M. P., de Menezes, T. A., Calado, A. A., & de Aguiar Cavalcanti, G. (2012). Burden and quality of life among caregivers of children and adolescents with meningomyelocele: Measuring the relationship to anxiety and depression. Spinal Cord, 50(7), 553–557.
Price, M. R., Bratton, D. L., & Klinnert, M. D. (2002). Caregiver negative affect is a primary determinant of caregiver report of pediatric asthma quality of life. Annals of Allergy, Asthma & Immunology, 89(6), 572–577.
Bender, B. G., & Bender, S. E. (2005). Patient-identified barriers to asthma treatment adherence: Responses to interviews, focus groups, and questionnaires. Immunology and Allergy Clinics of North America, 25(1), 107–130.
Stewart, M. A. (1995). Effective physician-patient communication and health outcomes: A review. CMAJ, 152(9), 1423–1433.
Yuce, M., Zoroglu, S. S., Ceylan, M. F., Kandemir, H., & Karabekiroglu, K. (2013). Psychiatric comorbidity distribution and diversities in children and adolescents with attention deficit/hyperactivity disorder: A study from Turkey. Neuropsychiatric Disease and Treatment, 9, 1791–1799.
Antshel, K. M., Zhang-James, Y., & Faraone, S. V. (2013). The comorbidity of ADHD and autism spectrum disorder. Expert Review of Neurotherapeutics, 13(10), 1117–1128.
Janeslatt, G., Granlund, M., & Kottorp, A. (2009). Measurement of time processing ability and daily time management in children with disabilities. Disability and Health Journal, 2(1), 15–19.
Neece, C. L. (2013) Mindfulness-based stress reduction for parents of young children with developmental delays: Implications for parental mental health and child behavior problems. Journal of Applied Research in Intellectual Disabilities, 27, 174–186.
Valicenti-McDermott, M. R., & Demb, H. (2006). Clinical effects and adverse reactions of off-label use of aripiprazole in children and adolescents with developmental disabilities. Journal of Child and Adolescent Psychopharmacology, 16(5), 549–560.
Kocsis, J. H., Gelenberg, A. J., Rothbaum, B., Klein, D. N., Trivedi, M. H., Manber, R., et al. (2008). Chronic forms of major depression are still undertreated in the 21st century: Systematic assessment of 801 patients presenting for treatment. Journal of Affective Disorders, 110(1–2), 55–61.
Young, A. S., Klap, R., Sherbourne, C. D., & Wells, K. B. (2001). The quality of care for depressive and anxiety disorders in the United States. Archives of General Psychiatry, 58(1), 55–61.
Horwitz, S. M., Kelleher, K. J., Stein, R. E., Storfer-Isser, A., Youngstrom, E. A., Park, E. R., et al. (2007). Barriers to the identification and management of psychosocial issues in children and maternal depression. Pediatrics, 119(1), e208–e218.
Heneghan, A. M., Silver, E. J., Bauman, L. J., & Stein, R. E. (2000). Do pediatricians recognize mothers with depressive symptoms? Pediatrics, 106(6), 1367–1373.
Dubowitz, H., Feigelman, S., Lane, W., Prescott, L., Blackman, K., Grube, L., et al. (2007). Screening for depression in an urban pediatric primary care clinic. Pediatrics, 119(3), 435–443.
Freeman, M. P., Wright, R., Watchman, M., Wahl, R. A., Sisk, D. J., Fraleigh, L., et al. (2005). Postpartum depression assessments at well-baby visits: Screening feasibility, prevalence, and risk factors. Journal of Women’s Health, 14(10), 929–935.
Mishina, H., & Takayama, J. I. (2009). Screening for maternal depression in primary care pediatrics. Current Opinion in Pediatrics, 21(6), 789–793.
Chaudron, L. H., Szilagyi, P. G., Kitzman, H. J., Wadkins, H. I., & Conwell, Y. (2004). Detection of postpartum depressive symptoms by screening at well-child visits. Pediatrics, 113(3 Pt 1), 551–558.
Heneghan, A. M., Mercer, M., & DeLeone, N. L. (2004). Will mothers discuss parenting stress and depressive symptoms with their child’s pediatrician? Pediatrics, 113(3 Pt 1), 460–467.
Acknowledgments
This work was supported by The National Institutes of Health (RO1 HL079954).
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Koehler, A.D., Fagnano, M., Montes, G. et al. Elevated Burden for Caregivers of Children with Persistent Asthma and a Developmental Disability. Matern Child Health J 18, 2080–2088 (2014). https://doi.org/10.1007/s10995-014-1455-6
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10995-014-1455-6