Nutrition Service and Education Needs of Children With Disabilities and Chronic Illnesses

National leaders in maternal and child health have recommended that nutrition services for children with special health care needs be culturally sensitive, family centered, and community based, and that families of children served be included in all levels of service development, implementation, and evaluation. The purpose of this research was to identify needs for nutrition services and nutrition education resources, as perceived by parents of children with special health care needs. Needs were assessed using the focus group technique, a qualitative research method that has been used for health promotion and nutrition education needs assessment in a variety of settings with various population groups. Focus groups were conducted with parents in three of four Children\u27s Medical Program (CMP) regions of a southeastern state. Parents were invited to participate in the focus groups through region-specific mailings to families of children receiving services through the CMP or through notification in a parent support group newsletter. Four focus groups ranging in size from four to six parents were conducted. The groups were representative of the racial diversity and the variety of disabilities and chronic illnesses included in the population of children served by the CMP. Conditions represented included phenylketonuria, galactosemia, Down syndrome, cerebral palsy, spina bifida, cleft Up/palate, and others. Focus group sessions were conducted by a social worker and a dietitian trained in the technique, and were recorded on audiotape. Tapes were transcribed following the sessions, and reviewed to identify common themes. Nutrition education needs identified included: need for information on reading food labels to determine if a particular food is appropriate for the child\u27s dietary restrictions and for information on meal planning to address the family\u27s nutritional needs as well as the specific needs of the chfld. Nutrition service needs included: need for more service delivery and follow-up care at the local level; need for assistance in working with school foodservice to meet child\u27s special nutritional needs in the school setting. Parents are an important source of information about nutrition-related needs of children with chronic illnesses and disabilities. The focus group technique can be used to seek their input as a basis for development of programs, services, and educational materials. © 1995 American Dietetic Association