Original articleSatisfaction With Primary Health Care Received by Families of Children With Developmental Disabilities
Section snippets
Methods
The sample for this survey included patients who currently receive services at the Kirch Developmental Services Center, Golisano Children’s Hospital, University of Rochester Medical Center. This program provides care to children who have physical disabilities such as spina bifida and cerebral palsy, as well as developmental disabilities such as autism and mental retardation. Individuals with these four conditions were identified through a centralized database, and surveys were mailed to them.
General Analyses
Three hundred surveys were mailed. Twenty surveys were returned by the postal service because the addresses were no longer valid; two children were deceased. A total of 121 surveys were returned for a corrected return rate of 44%. To satisfy Health Insurance Portability and Accountability Act regulations, we did not have demographic information on the individuals when the surveys were mailed. Therefore, we could not compare characteristics of those who did and did not return the survey. Table 1
Discussion
Few studies of patient satisfaction have been performed with families of children who have developmental disabilities (Breslau and Mortimer 1981, Ho et al 1994, King et al 1999, Reichard and Turnbull 2004, Venter 1997). King et al. found that information and support provided by professional caregivers to families of children with physical disabilities (cerebral palsy, hydrocephalus, and spina bifida) were associated with parental satisfaction, which, in turn, was associated with lower parental
Gregory S. Liptak is Professor of Pediatrics and Clinical Nursing, University of Rochester Medical Center, Rochester, NY.
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Gregory S. Liptak is Professor of Pediatrics and Clinical Nursing, University of Rochester Medical Center, Rochester, NY.
Mark Orlando is Associate Professor of Otolaryngology, University of Rochester Medical Center, Rochester, NY.
Jacalyn T. Yingling is Family Faculty Member, Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Program, through a collaboration with The Advocacy Center.
Karin L. Theurer-Kaufman is Clinical Assistant Professor of Pediatrics, University of Rochester Medical Center, Rochester, NY.
Daniel P. Malay is Physical Therapist, University Hospital at Upstate Medical University, Syracuse, NY.
Luz A. Tompkins is Clinical Social Worker, Catholic Family Center, Rochester, NY.
Jeannette R. Flynn is Fellow in Pediatric Hematology/Oncology, the Center for Children, Huntsman Cancer Institute in the Division of Pediatric Hematology/Oncology, University of Utah School of Medicine, Salt Lake City, Utah.
This project was funded in part by the Maternal and child Health Bureau’s Leadership Education in Neurodevelopment and Related Disabilities (LEND) program.