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Keywords:

  • children with special health care needs;
  • family;
  • family-centered care;
  • MCHB objectives;
  • NS-CSHCN

Abstract

Objective

We assessed experiences of families with children with special health care needs already engaged with Tennessee Children's Special Services or a family advocacy agency, family voices, and compared their experiences with national data to determine achievement of national maternal-child health objectives.

Design and Sample

Using a descriptive/comparison design, Tennessee families engaged with the state or advocacy agency (n = 816) were compared with the 2005–2006 sample of the National Survey of Children with Special Health Care Needs (n = 40,840) and the Tennessee subsample (n = 794).

Measures

Primary data were obtained from a survey of families associated with either Tennessee agency. Secondary data analysis used raw data from the national survey.

Results

All families reported challenges related to time, finances, and family interactions. Most were satisfied with health care services received. Dental care was an issue for all families, but more so for the agencies' sample. Those families also reported more problems with continuous screenings of their affected child and less coordination of care than the national sample.

Conclusions

Examining the experiences of families with special needs children who receive services from state agencies in the national context contributes to improving family-centered services and achieving Maternal-Child Health Bureau objectives.