Función Motriz Oral

Journal of Developmental and Physical Disabilities, Vol. 18, No. 4, December 2006 ( C 2006 )
DOI: 10.1007/s10882-006-9020-x

Perspectives of Parents/Guardians of Children
with Feeding/Swallowing Problems
Julia B. Stoner,1,2 Rita L. Bailey,1 Maureen E. Angell,1 Julie Robbins,1
and Korrin Polewski1
Published online: 27 September 2006

Parents and guardians of children with disabilities andchronic illness travel a
difficult road. This appears to be especially true of parents/guardians of children with feeding and swallowing problems. These parents/guardians experience concerns that influence their children’s ability to access an appropriate
education, as they often negatively affect their children’s health, nutrition, and
social-emotional experiences. The particular experiencesand concerns that
parents/guardians of children with feeding/swallowing problems face in managing these issues in home and school settings have not been investigated. To
this end, semi-structured interviews were conducted with parents/guardians
of 8 children identified with feeding and/or swallowing disorders who ranged
in age from 2 through 11 years. Research questions focused on descriptions ofparent experiences related to their children’s feeding/swallowing
problems, interactions with professionals involved in intervention, and experiences with school-based management of feeding/swallowing problems.
Results may lead to development of improved preparation and training of professionals responsible for providing special education and related services for children with disabilitiesaffecting feeding/swallowing
processes.
KEY WORDS: feeding; parent perspectives; early intervention; dyshpagia.

Recent improvements in technology and medical fields have increased
survival rates for many high-risk infants. Many infants survive seemingly insurmountable odds, but are left with chronic health problems and
1 Department of Special Education, Department of Speech Pathology andAudiology, Normal,

Illinois.
whom correspondence should be addressed at Department of Special Education, Illinois
State University, Normal, Illinois 61790-5910; e-mail: jbstone@ilstu.edu.

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Stoner, Bailey, Angell, Robbins, and Polewski

severe and/or multiple disabilities. These children oftenexperience feeding/swallowing problems secondary to medical conditions and/or other
disabilities.
Management of feeding/swallowing problems in children with disabilities is one of the most quickly growing patient care areas for health care professionals (Arvedson and Brodsky, 2002). Feeding problems often intensify during periods of most active growth, which typically occur from birth
through 2years of age (Gisel et al., 1998) when developmental supports
and related services are often provided by the early intervention system.
The Individuals with Disabilities Education Act (IDEA) (1997) mandated
that every child at risk for developmental problems, birth through 3 years of
age, be offered effective and appropriate services through an Individualized
Family Service Plan (IFSP) (Arvedsonand Brodsky). The IFSP documents
family concerns, resources, and priorities and provides opportunities for appropriate education and related services (Turnbull and Turnbull, 1997). The
IDEA also requires that the services provided to children between the ages
of 3 and 5 years be comparable to those received by school-aged children
(Hedge, 1998).
Children with disabilities between the ages of5 and 21 are offered
services through Individualized Education Programs (IEPs). Special educators and related service personnel (e.g., speech-language pathologists
(SLPs), occupational therapists, and physical therapists) are responsible for
programming for children with feeding/swallowing problems in school settings. Unfortunately, Silliman (2000) reported that many school personnel
lack...