The objective of this study is to examine the association of family-centered care (FCC) with specific health care service outcomes for children with special health care needs (CSHCN). The study is a secondary analysis of the 2005–2006 National Survey of Children with Special Health Care Needs. Receipt of FCC was determined by five questions regarding how well health care providers addressed family concerns in the prior 12 months. We measured family burden by reports of delayed health care, unmet need, financial costs, and time devoted to care; health status, by stability of health care needs; and emergency department and outpatient service use. All statistical analyses used propensity score-based matching models to address selection bias. FCC was reported by 65.6% of respondents (N = 38,915). FCC was associated with less delayed health care (AOR: 0.56; 95% CI: 0.48, 0.66), fewer unmet service needs (AOR: 0.53; 95% CI: 0.47, 0.60), reduced odds of ≥1 h/week coordinating care (AOR: 0.83; 95% CI: 0.74, 0.93) and reductions in out of pocket costs (AOR: 0.88; 95% CI: 0.80, 0.96). FCC was associated with more stable health care needs (AOR: 1.11; 95% CI: 1.01, 1.21), reduced odds of emergency room visits (AOR: 0.90; 95% CI: 0.82, 0.99) and increased odds of doctor visits (AOR: 1.25; 95% CI: 1.14, 1.37). Our study demonstrates associations of positive health and family outcomes with FCC. Realizing the health care delivery benefits of FCC may require additional encounters to build key elements of trust and partnership.
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McPherson, M., Arango, P., Fox, H., Lauver, C., McManus, M., Newacheck, P. W., et al. (1998). A new definition of children with special health care needs. Pediatrics, 102(1 Pt 1), 137–140.
Bethell, C. D., Read, D., Blumberg, S. J., & Newacheck, P. W. (2008). What is the prevalence of children with special health care needs? Toward an understanding of variations in findings and methods across three national surveys. Maternal and Child Health Journal, 12(1), 1–14.
Chevarley, F.M. (2002). Access to needed medical care among children under 18 years of age with special health care needs. Rockville, MD: Agency for Healthcare Research and Quality. Report No. 75.
Chevarley, F.M. (2006). Utilization and expenditures for children with special health care needs. Rockville, MD: Agency for Healthcare Research and Quality. Report No. 24.
Newacheck, P. W., & Kim, S. E. (2005). A national profile of health care utilization and expenditures for children with special health care needs. Archives of Pediatrics and Adolescent Medicine, 159(1), 10–17.
Wells, N., Krauss, M. W., Anderson, B., Gulley, S., Leiter, V., O’Neil, M., et al. (2000). What do families say about health care for children with special health care needs? Your voice counts!! The Family Partners Project report to families. Boston, MA: Family Voices at the Federation for Children with Special Health Care Needs.
Denboba, D., McPherson, M. G., Kenney, M. K., Strickland, B., & Newacheck, P. W. (2006). Achieving family and provider partnerships for children with special health care needs. Pediatrics, 118(4), 1607–1615.
Silver, E. J., & Stein, R. E. (2001). Access to care, unmet health needs, and poverty status among children with and without chronic conditions. Ambulatory Pediatrics, 1(6), 314–320.
Perrin, J. M., Romm, D., Bloom, S. R., Homer, C. J., Kuhlthau, K. A., Cooley, C., et al. (2007). A family-centered, community-based system of services for children and youth with special health care needs. Archives of Pediatrics and Adolescent Medicine, 161(10), 933–936.
US Department of Human Services HRSA, Maternal and Child Health Bureau. (2007). The National Survey of Children with Special Health Care Needs Chartbook 2005–2006. Rockville, MD.
Institute for Patient- and Family-Centered Care. (n.d.). Patient- and family-centered care core concepts. http://www.familycenteredcare.org/faq.html. Accessed June 14, 2010.
Bamm, E. L., & Rosenbaum, P. (2008). Family-centered theory: Origins, development, barriers, and supports to implementation in rehabilitation medicine. Archives of Physical Medicine and Rehabilitation, 89(8), 1618–1624.
Maternal and Child Health Bureau. (2005). Definition of Family-Centered Care. www.familyvoices.org/Information/FCCare.rtf. Accessed June 28, 2010.
American Academy of Pediatrics Committee on Hospital Care. (2003). Family-centered care and the pediatrician’s role. Pediatrics, 112(3 Pt 1), 691–697.
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(5 Suppl), 1485–1492.
Hook, M. L. (2006). Partnering with patients—A concept ready for action. Journal of Advanced Nursing, 56(2), 133–143.
Dunst, C. J., Trivette, C. M., & Hamby, D. W. (2007). Meta-analysis of family-centered helpgiving practices research. Mental Retardation and Developmental Disabilities Research Reviews, 13(4), 370–378.
Thompson, L. A., Knapp, C. A., Saliba, H., Giunta, N., Shenkman, E. A., & Nackashi, J. (2009). The impact of insurance on satisfaction and family-centered care for CSHCN. Pediatrics, 124(Suppl 4), S420–S427.
Ngui, E. M., & 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), 1184–1196.
Coker, T. R., Rodriguez, M. A., & Flores, G. (2010). Family-centered care for US children with special health care needs: Who gets it and why. Pediatrics, 125(6), 1159–1167.
Knapp, C. A., Madden, V. L., Marcu, M. I. (2009). Factors that affect parent perceptions of provider-family partnership for children with Special Health Care Needs. Maternal and Child Health Journal.
Turchi, R. M., Berhane, Z., Bethell, C., Pomponio, A., Antonelli, R., & Minkovitz, C. S. (2009). Care coordination for CSHCN: associations with family-provider relations and family/child outcomes. Pediatrics, 124(Suppl 4), S428–S434.
Bonner, S., Zimmerman, B. J., Evans, D., Irigoyen, M., Resnick, D., & Mellins, R. B. (2002). An individualized intervention to improve asthma management among urban Latino and African-American families. Journal of Asthma, 39(2), 167–179.
Brousseau, D. C., Hoffmann, R. G., Nattinger, A. B., Flores, G., Zhang, Y., & Gorelick, M. (2007). Quality of primary care and subsequent pediatric emergency department utilization. Pediatrics, 119(6), 1131–1138.
Blumberg, S. J., Welch, E. M., Chowdhury, S. R., Upchurch, H. L., Parker, E. K., Skalland, B. J. (2007). Design and operation of the National Survey of Children with Special Health Care Needs, 2005–06: National Center for Health Statistics.
Bethell, C. D., Read, D., Stein, R. E., Blumberg, S. J., Wells, N., & Newacheck, P. W. (2002). Identifying children with special health care needs: Development and evaluation of a short screening instrument. Ambulatory Pediatrics, 2(1), 38–48.
Andersen, R. M. (1995). Revisiting the behavioral model and access to medical care: Does it matter? Journal of Health and Social Behavior, 36(1), 1–10.
Phillips, K. A., Morrison, K. R., Andersen, R., & Aday, L. A. (1998). Understanding the context of healthcare utilization: Assessing environmental and provider-related variables in the behavioral model of utilization. Health Services Research, 33(3 Pt 1), 571–596.
Sobo, E. J., Seid, M., & Reyes Gelhard, L. (2006). Parent-identified barriers to pediatric health care: A process-oriented model. Health Services Research, 41(1), 148–172.
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.
Davis, M. M., & Brosco, J. P. (2007). Being specific about being special: Defining children’s conditions and special health care needs. Archives of Pediatrics and Adolescent Medicine, 161(10), 1003–1005.
Bethell, C. D., Read, D., & Brockwood, K. (2004). Using existing population-based data sets to measure the American Academy of Pediatrics definition of medical home for all children and children with special health care needs. Pediatrics, 113(5 Suppl), 1529–1537.
Stein, R. E., & Silver, E. J. (2005). Are rates of functional limitations associated with access to care? A state-level analysis of the national survey of children with special health care needs. Maternal and Child Health Journal, 9(2 Suppl), S33–S39.
Nageswaran, S., Silver, E. J., & Stein, R. E. (2008). Association of functional limitation with health care needs and experiences of children with special health care needs. Pediatrics, 121(5), 994–1001.
Dusing, S. C., Skinner, A. C., & Mayer, M. L. (2004). Unmet need for therapy services, assistive devices, and related services: Data from the national survey of children with special health care needs. Ambulatory Pediatrics, 4(5), 448–454.
Altman, D. G., & Royston, P. (2006). The cost of dichotomising continuous variables. BMJ, 332(7549), 1080.
Rosenbaum, P. R., & Rubin, D. B. (1984). Reducing bias in observational studies using subclassification on the propensity score. Journal of the American Statistical Association, 79(387), 516–524.
Rosenbaum, P. R., & Rubin, D. B. (1983). The central role of the propensity score in observational studies for causal effects. Biometrika, 70(1), 41–55.
Silber, J. H., Rosenbaum, P. R., Trudeau, M. E., Even-Shoshan, O., Chen, W., Zhang, X., et al. (2001). Multivariate matching and bias reduction in the surgical outcomes study. Medical Care, 39(10), 1048–1064.
Stein, R. E., Horwitz, S. M., Storfer-Isser, A., Heneghan, A., Olson, L., & Hoagwood, K. E. (2008). Do pediatricians think they are responsible for identification and management of child mental health problems? Results of the AAP periodic survey. Ambulatory Pediatrics, 8(1), 11–17.
Liptak, G. S., Orlando, M., Yingling, J. T., Theurer-Kaufman, K. L., Malay, D. P., Tompkins, L. A., 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.
Toomey, S. L., Homer, C. J., & Finkelstein, J. A. (2010). Comparing medical homes for children with ADHD and asthma. Academic Pediatrics, 10(1), 56–63.
Berwick, D. M. (2009). What ‘patient-centered’ should mean: Confessions of an extremist. Health Affairs (Millwood), 28(4), w555–w565.
Leiter, V. (2004). Dilemmas in sharing care: Maternal provision of professionally driven therapy for children with disabilities. Social Science and Medicine, 58(4), 837–849.
MacKean, G. L., Thurston, W. E., & Scott, C. M. (2005). Bridging the divide between families and health professionals’ perspectives on family-centred care. Health Expectations, 8(1), 74–85.
Muething, S. E., Kotagal, U. R., Schoettker, P. J., Gonzalez del Rey, J., & DeWitt, T. G. (2007). Family-centered bedside rounds: A new approach to patient care and teaching. Pediatrics, 119(4), 829–832.
Sisterhen, L. L., Blaszak, R. T., Woods, M. B., & Smith, C. E. (2007). Defining family-centered rounds. Teaching and Learning in Medicine, 19(3), 319–322.
Cooley, W. C., McAllister, J. W., Sherrieb, K., & Kuhlthau, K. (2009). Improved outcomes associated with medical home implementation in pediatric primary care. Pediatrics, 124(1), 358–364.
Homer, C. J., Klatka, K., Romm, D., Kuhlthau, K., Bloom, S., Newacheck, P., et al. (2008). A review of the evidence for the medical home for children with special health care needs. Pediatrics, 122(4), e922–e937.
Shields, L., Pratt, J., & Hunter, J. (2006). Family centred care: A review of qualitative studies. Journal of Clinical Nursing, 15(10), 1317–1323.
The first author is supported by a grant from the Arkansas Biosciences Institute. The authors have no financial relationships to disclose.
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Kuo, D.Z., Bird, T.M. & Tilford, J.M. Associations of Family-Centered Care with Health Care Outcomes for Children with Special Health Care Needs. Matern Child Health J 15, 794–805 (2011). https://doi.org/10.1007/s10995-010-0648-x
- Family-centered care
- Physician/patient relationship
- Children with special health care needs
- Unmet needs
- Health care outcomes