Parents and guardians of children with disabilities and chronic 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 experiences and 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 of parent 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 disabilities affecting feeding/swallowing processes.
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Appendix
Appendix
Interview Questions Addressing Research Question 1: How do parents/guardians describe their children’s feeding/swallowing problems?
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1.
Tell me about your child.
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2.
How did you discover the feeding problems?
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3.
Describe your child’s feeding problem at home and at school.
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4.
Tell me how you manage the feeding problem at home.
Interview Questions Addressing Research Question 2: How do parents/guardians describe their interactions with professionals who have been involved in the management of children’s feeding/swallowing problems?
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5.
Describe whom you interacted with when the feeding problem became evident.
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What information and resources were you given?
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7.
How much did you understand?
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What was the attitude of the professionals toward the feeding problem?
Interview Questions Addressing Research Question 3: How do parent/guardians describe their experiences with professionals school-based management of their children’s feeding/swallowing problems?
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9.
Did your child receive services prior to school? If so, when?
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Tell me about how the school personnel managed your child’s feeding.
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Are there feeding goals on your child’s IEP?
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12.
What has worked to facilitate effective management of the feeding disorder? Why?
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What has not worked as a facilitator of effective management of the feeding disorder? Why?
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Stoner, J.B., Bailey, R.L., Angell, M.E. et al. Perspectives of Parents/Guardians of Children with Feeding/Swallowing Problems. J Dev Phys Disabil 18, 333–353 (2006). https://doi.org/10.1007/s10882-006-9020-x
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DOI: https://doi.org/10.1007/s10882-006-9020-x