Elsevier

Journal of Pediatric Health Care

Volume 20, Issue 4, July–August 2006, Pages 245-252
Journal of Pediatric Health Care

Original article
Satisfaction With Primary Health Care Received by Families of Children With Developmental Disabilities

https://doi.org/10.1016/j.pedhc.2005.12.008Get rights and content

Abstract

Objective

To evaluate the perceptions of families of children with developmental disabilities regarding their primary care physicians and to determine if differences exist for different conditions.

Methods

Mailed survey to families of children who had autism, physical disabilities (cerebral palsy or spina bifida) and mental retardation that included the Multidimensional Assessment of Parental Satisfaction for Children with Special Needs.

Results

One hundred twenty-one families responded. Families rated physicians highest on their ability to keep up with new aspects of care and on their sensitivity to the needs of children. Parents had the lowest ratings for the primary care physicians’ ability to put them in touch with other parents, understanding of the impact of the child’s condition on the family, ability to answer questions about the child’s condition, and information and guidance for prevention. Physicians’ knowledge about complementary and alternative medicine and their qualifications to manage developmental disabilities ranked worse than neutral. Families with a child with autism had more spontaneous negative comments and rated their primary care physicians lower on several aspects of care. They requested more information on complementary and alternative medicine and more support in the community.

Discussion

Families of children with developmental disabilities demonstrate dissatisfaction with several aspects of health care that can serve as areas for intervention by their health care providers. Families of children with autism in particular articulate dissatisfaction and voice unmet needs.

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.

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