Abstract
This qualitative study examines differences between perceptions of parents and pediatricians regarding the needs of children with autism spectrum disorders (ASDs) and their families within the medical home. Two separate focus groups of parents of children with ASDs and pediatricians were conducted. Parents and pediatricians identify unmet needs within medical homes of children with ASDs. Parents perceived that physicians did not act early upon their concerns about development, and that care is less comprehensive, coordinated and family-centered than desired. Pediatricians desire to improve services but cite lack of time, training and resources as barriers. Medical homes for children with ASDs would benefit from better pediatrician ASD education and medical systems that support extended visits, care coordination and interdisciplinary collaboration.
Similar content being viewed by others
References
American Academy of Pediatrics. (2001). American academy of pediatrics: Counseling families who choose complementary and alternative medicine for their child with chronic illness or disability. Committee on children with disabilities. Pediatrics, 107(3), 598–601.
American Academy of Pediatrics. (2002). The medical home. Pediatrics, 110(1 Pt 1), 184–186.
American Academy of Pediatrics. (2008). “The national center of medical home initiatives for children with special needs.” Retrieved August 30, 2009 from http://www.medicalhomeinfo.org.
American Academy of Pediatrics and American Academy of Family Physicians. (2002). A consensus statement on health care transitions for young adults with special health care needs. Pediatrics, 110(6 Pt 2), 1304–1306.
American Academy of Pediatrics Autism Expert Panel. (2007). Autism: Caring for children with autism spectrum disorders: A resource tookit for clinicians. Elk Grove, IL: American Academy of Pediatrics.
Association of University Centers on Disabilities (AUCD). (2009). “Leadership education in neurodevlopmental and related disabilities (LEND).” Retrieved August 30, 2009 from http://www.aucd.org/template/page.cfm?id=6.
Bayat, M. (2007). Evidence of resilience in families of children with autism. Journal of intellectual disability Research, 51(Pt 9), 702–714.
Brachlow, A. E., Ness, K. K., et al. (2007). Comparison of indicators for a primary care medical home between children with autism or asthma and other special health care needs: National survey of children’s health. Archives of Pediatrics and Adolescent Medicine, 161(4), 399–405.
Brotherson, M. J. (1994). Interactive focus group interviewing: A qualitative method in early intervention. Topics in Early Childhood Special Education, 14(1), 101–118.
Children with Special Health Care Needs. (2009). Children with special health care needs. Retrieved August 30, 2009 from http://health.utah.gov/cshcn/.
Denboba, D., McPherson, M. G., et al. (2006). Achieving family and provider partnerships for children with special health care needs. Pediatrics, 118(4), 1607–1615.
Golnik, A. E., & Ireland, M. (2009). Complementary alternative medicine for children with autism: a physician survey. Journal of Autism and Developmental Disorders, 39(7), 996–1005.
Golnik, A., Ireland, M., et al. (2009). Medical homes for children with autism: a physician survey. Pediatrics, 123(3), 966–971.
Hargunani, D., Reynolds, J., et al. (2006). Barriers to the access of primary healthcare for autistic children: Parent and pediatrician perspectives. San Francisco, CA: Annual Pediatric Academic Society Meeting.
Harrington, J. W., Rosen, L., et al. (2006). Parental perceptions and use of complementary and alternative medicine practices for children with autistic spectrum disorders in private practice. Journal of Developmental and Behavioral Pediatrics, 27(2 Suppl), S156–S161.
Howlin, P., & Asgharian, A. (1999). The diagnosis of autism and Asperger syndrome: findings from a survey of 770 families. Developmental Medicine and Child Neurology, 41(12), 834–839.
Johnson, C. P., & Myers, S. M. (2007). Identification and evaluation of children with autism spectrum disorders. Pediatrics, 120(5), 1183–1215.
Kueger, R. A. (1988). Focus groups: A practical guide for applied research. Newbury Park, CA: Sage Publications.
Levy, S. E., & Hyman, S. L. (2008). Complementary and alternative medicine treatments for children with autism spectrum disorders. Child and Adolescent Psychiatric Clinics of North America, 17(4), 803–820. ix.
Liptak, G. S., Orlando, M., et al. (2006). Satisfaction with primary health care received by families of children with developmental disabilities. Journal of pediatric health care, 20(4), 245–252.
Liptak, G. S., & Revell, G. M. (1989). Community physician’s role in case management of children with chronic illnesses. Pediatrics, 84(3), 465–471.
McPherson, M., Weissman, G., et al. (2004). Implementing community-based systems of services for children and youths with special health care needs: How well are we doing? Pediatrics, 113(5 Suppl), 1538–1544.
Murphy, N. A., Christian, B., et al. (2007). The health of caregivers for children with disabilities: caregiver perspectives. Child: Care, Health and Development, 33(2), 180–187.
Myers, S. M., & Johnson, C. P. (2007). Management of children with autism spectrum disorders. Pediatrics, 120(5), 1162–1182.
Schieve, L. A., Blumberg, S. J., et al. (2007). The relationship between autism and parenting stress. Pediatrics, 119(Suppl 1), S114–S121.
Swiezy, N., Stuart, M., et al. (2008). Bridging for success in autism: training and collaboration across medical, educational, and community systems. Child and Adolescent Psychiatric Clinics of North America, 17(4), 907–922. xi.
Stewart, D. W., & Shamdasani, P. N. (1990). Focus groups: Theory and practice. Newbury Park, CA: Sage Publications.
Utah Baby Watch Early Intervention Program. Baby watch early intervention program. Retrieved August 30, 2009 from http://www.utahbabywatch.org/eiservices/index.htm.
Utah Collaborative Medical Home Project. (2001). Utah medhome portal. Retrieved August 30, 2009 from http://www.medhomeportal.org.
Waisman Center. (2008). Medical home services for autism spectrum disorders. Retrieved August 30, 2009 from http://www.waisman.wisc.edu/cedd/guidelines/.
Wiggins, L. D., Baio, J., et al. (2006). Examination of the time between first evaluation and first autism spectrum diagnosis in a population-based sample. Journal of Developmental and Behavioral Pediatrics, 27(2 Suppl), S79–S87.
Woodgate, R. L., Ateah, C., et al. (2008). Living in a world of our own: the experience of parents who have a child with autism. Qualitative Health Research, 18(8), 1075–1083.
Ziring, P. R., Brazdziunas, D., et al. (1999). American academy of pediatrics. Committee on children with disabilities. Care coordination: Integrating health and related systems of care for children with special health care needs. Pediatrics, 104(4 Pt 1), 978–981.
Acknowledgments
This work was supported by the AAP Community Access To Child Health (CATCH) Program.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Carbone, P.S., Behl, D.D., Azor, V. et al. The Medical Home for Children with Autism Spectrum Disorders: Parent and Pediatrician Perspectives. J Autism Dev Disord 40, 317–324 (2010). https://doi.org/10.1007/s10803-009-0874-5
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10803-009-0874-5