Maternal and Child Health Journal

, Volume 15, Issue 4, pp 487–496 | Cite as

Delayed or Forgone Care and Dissatisfaction with Care for Children with Special Health Care Needs: The Role of Perceived Cultural Competency of Health Care Providers

  • Cheryl I. Kerfeld
  • Jeanne M. Hoffman
  • Marcia A. Ciol
  • Deborah Kartin


To better understand if reported delayed/forgone care and dissatisfaction with care for children with special health care needs (CSHCN) are associated with the parent’s perception of health care providers’ cultural competency. National survey. Fifty United States and the District of Columbia yielding 750 families per state and District of Columbia with CSHCN ≤ 18 years participated in the 2005–06 National Survey of CSHCN. Outcome measures were delayed/forgone care in the past 12 months (yes or no) and dissatisfaction (very dissatisfied to very satisfied). Demographic/clinical characteristics and the parent’s perception of health care providers’ cultural competency were examined. Perception of cultural competency was defined by questions related to time spent with child, respect for family values, listening to the family, sense of partnership, and information provided. Delayed/forgone care and dissatisfaction with care were associated with perceived health care provider cultural competency. Parents whose children were older, whose children’s condition affected their ability to do things, whose interviews were not conducted in English, and were from certain racial and ethnic groups reported more delayed or forgone care and were more dissatisfied with their children’s health care. Delayed/forgone care and dissatisfaction with care were associated with perceived cultural competency of health care providers. This did not appear to differ consistently by racial or ethnic group. Further research using more refined instruments and longitudinal designs is needed to assess the effects of health care providers’ cultural competency and other cultural factors on the delayed/forgone care for CSHCN and on the dissatisfaction with care of parents with CSHCN.


Children with special health care needs Cultural competency Family-centered care Dissatisfaction with care Delayed or forgone care Health disparities 



This study was supported by the NIH T32 Rehabilitation Research Training Grant, University of Washington, Seattle, Washington.


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Copyright information

© Springer Science+Business Media, LLC 2010

Authors and Affiliations

  • Cheryl I. Kerfeld
    • 1
  • Jeanne M. Hoffman
    • 1
  • Marcia A. Ciol
    • 1
  • Deborah Kartin
    • 1
  1. 1.Department of Rehabilitation MedicineUniversity of WashingtonSeattleUSA

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