Maternal and Child Health Journal

, Volume 13, Issue 1, pp 5–17 | Cite as

A Multi-Method Assessment of Satisfaction with Services in the Medical Home by Parents of Children and Youth with Special Health Care Needs (CYSHCN)

  • David L. Wood
  • Quimby E. McCaskill
  • Nancy Winterbauer
  • Edessa Jobli
  • Tao Hou
  • Peter S. Wludyka
  • Kristi Stowers
  • William Livingood


Objective To assess satisfaction of parents of children with special health care needs with treatment by office staff, communication with the pediatrician, involvement in decision-making and coordination of services outside the practice. Patients and Methods We used a mixed-method (qualitative and quantitative) approach to collect parental perceptions of the Medical Home services provided by their pediatricians. Six practices were selected to participate in the study based on geographic and patient demographic characteristics. In total, 262 (75% response rate) families completed surveys, and 28 families of these participated in focus groups. The Family Survey collected information (corroborated and enriched with focus group interviews) on parent and child demographics, severity of the child’s condition and the burden on parents. We assessed parental satisfaction with treatment by office staff, communication with the pediatrician, involvement in decision-making, and connection to services outside the practice. Survey responses were analyzed using SAS with all associations considered significant at the P < 0.05 level. Focus groups were recorded, transcribed into EZ-Text and analyzed by a team of three researchers to identify patterns and themes inherent in the data. Results Families reported in focus group interviews that they experienced significant stress due to the demands of caring for a child with special health care needs. Overall, only a small percentage of families reported being dissatisfied with their treatment by office staff (13–14%), communication with the pediatrician (10%), and involvement in decision-making (15–16%). However, a majority of families (approximately 58%) were dissatisfied with the ability of the pediatrician and his/her office to connect the families with resources outside the pediatric office. Families whose children had more severe conditions, or whose conditions had more of an impact on the families, reported being less satisfied with all aspects of communication and care coordination Families of youth with special health care needs (>12 years of age) were less satisfied than families of younger children with the practice’s ability to connect them to resources outside the practice. Conclusions Both the focus groups and surveys demonstrated that families of children with special needs are under very significant stress. Pediatricians must become better equipped to identify and communicate more proactively with families of CYSHCN that are experiencing significant parent burden. Pediatricians and their staff also need to improve their knowledge of community resources and proactively make referrals to community services needed by families of CYSHCN.


Medical Home Care coordination Parent assessment 


  1. 1.
    Newacheck, P. W., Strickland, B., Shonkoff, J. P., et al. (1998). An epidemiologic profile of children with special health care needs. Pediatrics, 102, 117–123.PubMedCrossRefGoogle Scholar
  2. 2.
    Ireys, H. T., Anderson, G. F., Shaffer, T. J., & Neff, J. M. (1997). Expenditures for care of children with chronic illnesses enrolled in the Washington State Medicaid program, fiscal year 1993. Pediatrics, 100, 197–204.PubMedCrossRefGoogle Scholar
  3. 3.
    Krauss, M. W., Wells, N., Gulley, S., & Anderson, B. (2001). Navigating systems of care: Results from a national survey of families of children with special health care needs. In: Children’s services: Social policy, research and practice (pp. 165–187). Mahwah, NJ: Lawrence Erlbaum Associates, Inc.Google Scholar
  4. 4.
    Shonkoff, J. P., Hauser-Cram, P., Krauss, M. W., & Upshur, C. C. (1992). Development of infants with disabilities and their families. Monographs of the Society for Research in Child Development, 57 (6, Serial no. 230).Google Scholar
  5. 5.
    Ziring, P. R., Brazdziunas, D., Cooley, W. C., et al. (1999). Care coordination: integrating health and related systems of care for children with special health care needs. Pediatrics, 104, 978–981.PubMedCrossRefGoogle Scholar
  6. 6.
    American Academy of Pediatrics (AAP). (2004). Policy statement: The Medical Home. Pediatrics, 113(5), 1545–1547.Google Scholar
  7. 7.
    Omnibus Budget Reconciliation Act of 1989. (1990). Public Law 101-239. Health Care Financing Review, 12(1):105–115.Google Scholar
  8. 8.
    McPherson, M., & Honberg, L. (2002). Identification of children with special health care needs: A cornerstone to achieving healthy people 2010. Ambulatory Pediatrics, 2, 22–23.PubMedCrossRefGoogle Scholar
  9. 9.
    Cooley, W. C., McAlister, J. W., Sherrieb, K., & Clark, R. E. (2003). The Medical Home Index: Development and validation of a new practice-level measure of implementation of the medical home model. Ambulatory Pediatrics, 3(4), 173–180.PubMedCrossRefGoogle Scholar
  10. 10.
    Davidson, E. J., Silva, T. J., Sofis, L. A., Ganz, M. L., & Palfrey, J. S. (2002). The doctor’s dilemma: challenges for the primary care physician caring for the child with special health care needs. Ambulatory Pediatrics, 2(3), 218–223.PubMedCrossRefGoogle Scholar
  11. 11.
    Moore, B., & Tonniges, T. F. (2004). The “every child deserves a medical home” training program: more than a traditional continuing medical education course. Pediatrics, 113(5 Suppl), 1479–1484.PubMedGoogle Scholar
  12. 12.
    Strickland, B., McPherson, M., Weissman, G., van Dyck, P., Huang, Z. J., & Newacheck, P. (2004). Access to the medical home: Results of the national survey of children with special health care needs. Pediatrics, 113, 1485–1492.PubMedGoogle Scholar
  13. 13.
    Tippy, K., Meyer, K., Aronson, R., & Wall, T. (2005). Characteristics of coordinated ongoing comprehensive care within a medical home in Maine. Maternal and Child Health Journal, 9S(2), S13–S21.CrossRefGoogle Scholar
  14. 14.
    Ruiz-Moral, R., Perula de Torres, L. A., & Jaramillo-Martin, I. (2007). The effect of patients’ met expectations on consultation outcomes. A study with family medicine residents. Journal of General Internal Medicine, 22(1), 86–91.PubMedCrossRefGoogle Scholar
  15. 15.
    Ross, C. K., Frommelt, G., Hazelwood, L., & Chang, R. W. (1987). The role of expectations in patient satisfaction with medical care. Journal of Health Care Marketing, 7(4), 16–26.PubMedGoogle Scholar
  16. 16.
    Aragon S. J. (2003). Commentary: A patient-centered theory of satisfaction. American Journal of Medical Quality, 18(6), 225–228.PubMedCrossRefGoogle Scholar
  17. 17.
    Darby C. (2002). Patient/parent assessment of the quality of care. Ambulatory Pediatrics, 2(4 Suppl), 345–348.PubMedCrossRefGoogle Scholar
  18. 18.
    Halfon, N., Inkelas, M., Mistry, R., & Olson, L. M. (2004). Satisfaction with health care for young children. Pediatrics, 113(6 Suppl), 1965–1972.PubMedGoogle Scholar
  19. 19.
    Ammentorp, J., Mainz, J., & Sabroe, S. (2005). Parents’ priorities and satisfaction with acute pediatric care. Archives of Pediatrics & Adolescent Medicine, 159(2), 127–131.CrossRefGoogle Scholar
  20. 20.
    Ngui, E., & Flores, G. (2006). Satisfaction with care and ease of using health care services among parents of children with special health care needs: The roles of race/ethnicity, insurance, language, and adequacy of family-centered care. Pediatrics, 117(4), 1185–1196.CrossRefGoogle Scholar
  21. 21.
    Baker, L. C., & Afendulis, C. (2005). Medicaid managed care and health care for children. Health Services Research, 40(5 Pt 1), 1466–1488.PubMedCrossRefGoogle Scholar
  22. 22.
    Stevens, G. D., Shi, L., & Cooper, L. A. (2003). Patient-provider racial and ethnic concordance and parent reports of the primary care experiences of children. Annals of Family Medicine, 1(2), 105–112.PubMedCrossRefGoogle Scholar
  23. 23.
    Anderson, L. M., Scrimshaw, S. C., Fullilove, M. T., Fielding, J. E., & Normand, J. (2003). Task Force on Community Preventive Services. Culturally competent healthcare systems. A systematic review. American Journal of Preventive Medicine, 24(3 Suppl), 68–79.PubMedCrossRefGoogle Scholar
  24. 24.
    Fan, V. S., Burman, M., McDonell, M. B., & Fihn, S. D. (2005). Continuity of care and other determinants of patient satisfaction with primary care. Journal of General Internal Medicine, 20(3), 226–233.PubMedCrossRefGoogle Scholar
  25. 25.
    Narayan, K. M., Gregg, E. W., Fagot-Campagna, A., Gary, T. L., Saaddine, J. B., Parker, C., Imperatore, G., Valdez, R., Beckles, G., & Engelgau, M. M. (2003). Relationship between quality of diabetes care and patient satisfaction. Journal of the National Medical Association, 95(1), 64–70.PubMedGoogle Scholar
  26. 26.
    Weisman, C. S., Rich, D. E., Rogers, J., Crawford, K. G., Grayson, C. E., & Henderson, J. T. (2000). Gender and patient satisfaction with primary care: Tuning in to women in quality measurement. Journal of Women's Health & Gender-Based Medicine, 9(6), 657–665.CrossRefGoogle Scholar
  27. 27.
    Seid, M., Stevens, G. D., & Varni, J. W. (2003). Parents’ perceptions of pediatric primary care quality: Effects of race/ethnicity, language, and access. Health Services Research, 38(4), 1009–1031.PubMedCrossRefGoogle Scholar
  28. 28.
    Mah, J. K., Tough, S., Fung, T., Douglas-England, K., & Verhoef, M. (2006). Adolescent quality of life and satisfaction with care. The Journal of Adolescent Health, 38(5), 607. e1–7.PubMedCrossRefGoogle Scholar
  29. 29.
    Flynn, J. M., Bravo, C. J., & Reyes, O. (2001). Care for children with special health care needs in a managed care system: A patient satisfaction survey. Puerto Rico Health Sciences Journal, 20(3), 245–250.PubMedGoogle Scholar
  30. 30.
    Lawoko S. (2007). Factors influencing satisfaction and well-being among parents of congenital heart disease children: Development of a conceptual model based on the literature review. Scandinavian Journal of Caring Sciences, 21(1), 106–117.PubMedCrossRefGoogle Scholar
  31. 31.
    Law, M., Hanna, S., King, G., Hurley, P., King, S., Kertoy, M., & Rosenbaum, P. (2003). Factors affecting family-centered service delivery for children with disabilities. Child: Care, Health and Development, 29(5), 357–366.CrossRefGoogle Scholar
  32. 32.
    Auslander, W. F., Thompson, S. J., Dreitzer, D., & Santiago, J. V. (1997). Mothers’ satisfaction with medical care: Perceptions of racism, family stress, and medical outcomes in children with diabetes. Health & Social Work, 22(3), 190–199.Google Scholar
  33. 33.
    Patrick, D. L., Scrivens, E., & Charlton, J. R. (1983). Disability and patient satisfaction with medical care. Medical Care, 21(11), 1062–1075.PubMedCrossRefGoogle Scholar
  34. 34.
    Liptak, G. S., Orlando, M., Yingling, J. T., Theurer-Kaufman, K. L., Malay, D. P., Tompkins, L. A., & Flynn, J. R. (2006). Satisfaction with primary health care received by families of children with developmental disabilities. Journal of Pediatric Health Care, 20, 245–252.PubMedCrossRefGoogle Scholar
  35. 35.
    Bromley, J., Hare, D. J., Davison, K., & Emerson, E. (2004). Mothers supporting children with autistic spectrum disorders: Social support, mental health status and satisfaction with services. Autism, 8(4), 409–423.PubMedCrossRefGoogle Scholar
  36. 36.
    Chomicki, S., & Wilgosh, L. (1992). Health care concerns among parents of children with mental retardation. Child Health Care, 21(4), 206–212.PubMedCrossRefGoogle Scholar
  37. 37.
    Krauss, M. W., Gulley, S., Sciegaj, M., & Wells, N. (2003). Access to specialty medical care for children with mental retardation, autism, and other special health care needs. Mental Retardation, 41, 529–339.CrossRefGoogle Scholar
  38. 38.
    National Science Foundation. (1997) User-friendly guide to mixed method evaluation. NSF 97-153. Arlington, VA: NSF.Google Scholar
  39. 39.
    Warfield, M. E., & Gulley, S. (2006). Unmet needs and problems accessing specialty medical and related services among children with special health care needs. Maternal and Child Health Journal 10(2), 201–216.PubMedCrossRefGoogle Scholar
  40. 40.
    Farmer, J. E., Clark, M. J., Sherman, A., Marien, W. E., & Selva, T. J. (2005). Comprehensive primary care for children with special health care needs in rural areas. Pediatrics, 116(3), 649–656.PubMedCrossRefGoogle Scholar
  41. 41.
    Nelson, C. S., Higman, S. M., Sia, C., McFarlane, E., Fuddy, L., & Duggan, A. (2005). Medical homes for at-risk children: parental reports of clinician–parent relationships, anticipatory guidance, and behavioral changes. Pediatrics, 115(1), 48–56.PubMedGoogle Scholar
  42. 42.
    Mulvihill, B. A., Wingate, M. S., Altara, M., Mulvihill, F. X., Redden, D. T., Telfair, J., Pass, M. A., & Ellis, D. E. (2005). The association of child condition severity with family functioning and relationship with health care providers among children and youth with special health care needs in Alabama. Maternal and Child Health Journal, 9S(2), S87–S97.CrossRefGoogle Scholar
  43. 43.
    King, G., King, S., Rosenbaum, P., & Goffin, R. (1999). Family centered care giving and well-being of parents of children with disabilities: Linking process with outcome. Journal of Pediatric Psychology, 24, 41–52.CrossRefGoogle Scholar
  44. 44.
    American Academy of Pediatrics (AAP). (2002). Policy statement: The Medical Home. Pediatrics 110(1), 184–186.CrossRefGoogle Scholar
  45. 45.
    Gupta, V. B., O’Connor, K. G., & Quezada-Gomez, C. (2004). Care coordination services in pediatric practices. Pediatrics, 113, 1517–1521.PubMedGoogle Scholar
  46. 46.
    Cooley W. C. (2004). Redefining primary pediatric care for children with special medical health care needs: the primary care medical home model. Current Opinion in Pediatrics, 16, 689–692.PubMedCrossRefGoogle Scholar
  47. 47.
    Stile, C. J., & Antonelli, R. C. (2004). Coordination of care for children with special health care needs. Current Opinion in Pediatrics, 16, 700–705.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC 2008

Authors and Affiliations

  • David L. Wood
    • 1
    • 2
  • Quimby E. McCaskill
    • 1
    • 2
  • Nancy Winterbauer
    • 2
    • 3
  • Edessa Jobli
    • 2
  • Tao Hou
    • 2
  • Peter S. Wludyka
    • 1
    • 4
  • Kristi Stowers
    • 2
  • William Livingood
    • 1
    • 2
  1. 1.Division of Community Pediatrics, Department of PediatricsCollege of Medicine, University of FloridaJacksonvilleUSA
  2. 2.Duval County Health DepartmentJacksonvilleUSA
  3. 3.Department of Sociology and AnthropologyUniversity of North FloridaJacksonvilleUSA
  4. 4.Department of Mathematics and StatisticsUniversity of North FloridaJacksonvilleUSA

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