Collaboration Among Families, Educators, and Medical Professionals to Create a Rural Medical Home for Children with Special Health Care Needs and Disabilities

Abstract

Families of children with special health care needs (CSHCN) and disabilities who lived in rural communities faced a variety of economic, social, and environmental challenges. Bronfenbrenner (1979, 2005) in his Bioecological Theory of Human Development offered an insightful lens for understanding the nested environments in which these families interact. This model was used as the overarching framework for this dissertation. The three manuscripts contained in this dissertation have included analyses of the involvement and participation of families of CSHCN and disabilities in the creation of a medical home located in a rural southwestern border community. These studies were critical for the medical home professionals - family involvement was at the core of the medical home philosophy. The overarching purpose of this dissertation was to set the foundation for successful family participation and feedback in the medical home. Within the first manuscript, I used the Medical Home Family Index to discover families’ (a) perceptions of interactions with medical professionals and (b) ratings of the quality of care within the medical home. Families of CSHCN (N = 92) completed the Medical Home Family Index and descriptive statistics as well as Chi-Square analyses were completed. Significant associations between families’ home languages and the amount of time the CSHCN had been receiving services at the medical home and the families’ responses were found. No associations between the children’s ages and the families’ responses were found. Recommendations for medical home professionals to complete the partner index, the Medical Home Index, were included. The purpose of the second manuscript was to examine the support needs of families of CSHCN and disabilities. Relationships between the severity of the children’s special health care needs and disabilities and the potential services they required were explored. For this study, a small sample (N = 25) of families of CSHCN completed the Family Needs section of the Center for Medical Home Improvement Family Survey, an in-depth, five-part survey designed to have families report on the services and supports that their CSHCN actually received. Families of CSHCN identified the need for therapies to be provided within the community. Findings from this study supported the creation of a pilot program in which parents were active participants in an intensive summer program designed to address the language and communication needs of their children. The purposes of the third manuscript were to (a) conduct research in two settings - a rural medical home and the families’ natural environments, (b) identify families’ perceptions of a targeted summer language intervention program, and (c) determine what changes in young children’s communication skills could be measured when parents were active members in a targeted summer language intervention program. For the third study, fourteen children with language delays and their families participated. Children were assessed using the Battelle Developmental Inventory-2nd Edition or the Preschool Language Scale-4th Edition. Intervention was conducted within a pediatric medical home and families continued the intervention at home. For both test results, the treatment had a significant effect. All families indicated a strong desire to continue the program and families who were most concerned with their children’s language were most satisfied with the program. This pilot program model was an example of ways that interventions could be extended successfully beyond traditional settings.