Skip to main content

Advertisement

SpringerLink
Log in

Elevated Burden for Caregivers of Children with Persistent Asthma and a Developmental Disability

  • Published:
Maternal and Child Health Journal Aims and scope Submit manuscript

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

References

  1. 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.

    Article  PubMed  Google Scholar 

  2. 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.

    Article  PubMed  Google Scholar 

  3. 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.

    Article  PubMed  Google Scholar 

  4. Becker, K. G. (2007). Autism, asthma, inflammation, and the hygiene hypothesis. Medical Hypotheses, 69(4), 731–740.

    Article  PubMed  PubMed Central  Google Scholar 

  5. 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.

    Article  PubMed  CAS  PubMed Central  Google Scholar 

  6. Pak, L., Allen, P. J. (2012). The impact of maternal depression on children with asthma. Pediatric Nursing, 38(1):11–9, 30.

    Google Scholar 

  7. 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.

    Article  PubMed  CAS  Google Scholar 

  8. 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.

    Article  PubMed  PubMed Central  Google Scholar 

  9. 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.

    Article  PubMed  Google Scholar 

  10. 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.

    PubMed  Google Scholar 

  11. 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.

    Article  PubMed  Google Scholar 

  12. 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.

    Article  PubMed  Google Scholar 

  13. 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.

    Article  PubMed  Google Scholar 

  14. Zuckerman, B. S., & Beardslee, W. R. (1987). Maternal depression: A concern for pediatricians. Pediatrics, 79(1), 110–117.

    PubMed  CAS  Google Scholar 

  15. 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.

    Article  PubMed  Google Scholar 

  16. 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.

    Article  PubMed  CAS  Google Scholar 

  17. 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.

    Article  PubMed  Google Scholar 

  18. 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.

    Article  PubMed  CAS  PubMed Central  Google Scholar 

  19. 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.

    Article  PubMed  CAS  Google Scholar 

  20. 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.

    Article  PubMed  CAS  Google Scholar 

  21. 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.

    Article  PubMed  Google Scholar 

  22. 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.

    Article  PubMed  Google Scholar 

  23. 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.

    Google Scholar 

  24. 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.

    Article  PubMed  Google Scholar 

  25. 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.

    Article  PubMed  Google Scholar 

  26. 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.

    Article  PubMed  CAS  Google Scholar 

  27. 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.

    Article  PubMed  Google Scholar 

  28. 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.

    Article  PubMed  Google Scholar 

  29. 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.

    Article  PubMed  PubMed Central  Google Scholar 

  30. 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.

    Article  PubMed  Google Scholar 

  31. 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.

    Article  PubMed  Google Scholar 

  32. 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.

    Article  PubMed  Google Scholar 

  33. 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.

    Google Scholar 

  34. 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.

    Article  PubMed  Google Scholar 

  35. 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.

    Article  PubMed  Google Scholar 

  36. 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.

    Article  PubMed  CAS  Google Scholar 

  37. 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.

  38. 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.

    Article  PubMed  Google Scholar 

  39. 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.

    Article  PubMed  CAS  Google Scholar 

  40. 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.

  41. 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.

    Article  PubMed  CAS  Google Scholar 

  42. Abidin, R. R. (1995). Parenting stress index (3rd ed.). Odessa, FL: Psychological Assessment Resources, Inc.

    Google Scholar 

  43. 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.

    Article  PubMed  PubMed Central  Google Scholar 

  44. 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.

    PubMed  CAS  Google Scholar 

  45. 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.

    Article  PubMed  Google Scholar 

  46. 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.

    Article  PubMed  PubMed Central  Google Scholar 

  47. 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.

    Article  PubMed  CAS  Google Scholar 

  48. 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.

  49. Benowitz, N. L. (1996). Cotinine as a biomarker of environmental tobacco smoke exposure. Epidemiologic Reviews, 18(2), 188–204.

    Article  PubMed  CAS  Google Scholar 

  50. Moffitt, T. E. (2002). Teen-aged mothers in contemporary Britain. Journal of Child Psychology and Psychiatry, 43(6), 727–742.

    Article  PubMed  Google Scholar 

  51. 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.

    Article  PubMed  Google Scholar 

  52. 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.

    Article  PubMed  Google Scholar 

  53. 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.

    Article  PubMed  PubMed Central  Google Scholar 

  54. 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.

    Article  CAS  Google Scholar 

  55. 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.

    Article  PubMed  CAS  Google Scholar 

  56. 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.

    Article  Google Scholar 

  57. 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.

    Article  PubMed  Google Scholar 

  58. Stewart, M. A. (1995). Effective physician-patient communication and health outcomes: A review. CMAJ, 152(9), 1423–1433.

    PubMed  CAS  PubMed Central  Google Scholar 

  59. 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.

    Article  PubMed  PubMed Central  Google Scholar 

  60. 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.

    Article  PubMed  CAS  Google Scholar 

  61. 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.

    Article  PubMed  Google Scholar 

  62. 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.

    Google Scholar 

  63. 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.

    Article  PubMed  Google Scholar 

  64. 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.

    Article  PubMed  PubMed Central  Google Scholar 

  65. 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.

    Article  PubMed  CAS  Google Scholar 

  66. 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.

    Article  PubMed  Google Scholar 

  67. 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.

    Article  PubMed  CAS  Google Scholar 

  68. 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.

    Article  PubMed  Google Scholar 

  69. 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.

    Article  PubMed  Google Scholar 

  70. Mishina, H., & Takayama, J. I. (2009). Screening for maternal depression in primary care pediatrics. Current Opinion in Pediatrics, 21(6), 789–793.

    Article  PubMed  Google Scholar 

  71. 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.

    Article  PubMed  Google Scholar 

  72. 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.

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

This work was supported by The National Institutes of Health (RO1 HL079954).

Author information

Authors and Affiliations

  1. Department of Pediatrics, University of Rochester, Box # 777, 601 Elmwood Avenue, Rochester, NY, 14642, USA

    Alana D. Koehler, Maria Fagnano & Jill S. Halterman

  2. Children’s Institute, 274 N. Goodman Street, Suite D103, Rochester, NY, 14607, USA

    Guillermo Montes

Authors
  1. Alana D. Koehler
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Maria Fagnano
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Guillermo Montes
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Jill S. Halterman
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Alana D. Koehler.

Rights and permissions

Reprints 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

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10995-014-1455-6

Keywords

Search

Navigation