Increasing access to information and support for families of children with special health care needs
Grantee: Georgetown University
Principal Investigator: Suzanne Bronheim
Project Number: R40MC17176
Project Date: 2/1/2010
Final Report
Age group(s)
- Women/Maternal
- Perinatal/Infancy (0-12 months)
- Toddlerhood (13-35 months)
- Early Childhood (3-5 years)
- Middle Childhood (6-11 years)
- Adolescence (12-18 years)
- Young Adulthood (19-25 years)
Targeted/Underserved Population
- African American
- Hispanic/Latino
Abstract
Families of children with special health care needs require high quality information that will allow them to be informed decision-makers and effective navigators of a complex and poorly coordinated system of services and supports. Yet, in national surveys and state level studies, families of children with disabilities repeatedly report that they cannot get the high quality information they need. This situation is striking because three federal agencies fund high quality Family-to-family centers within states that are expressly designed to give families the knowledge and support they need. Of particular concern is the significant reported disparity between non-Hispanic white families and African American and Hispanic families in access to needed information. The challenge is how to connect families who are not accessing those services so that they will receive the high quality knowledge they need. The problem is that the typical ways that families seek information about raising their children do not include looking to a government funded, state or regional organization. To do so would be, in the parlance of communication theory, adopting an innovation. Diffusion of Innovation theory posits that adopting an innovation means that families have to be aware of it, find it acceptable, be able to try it out and to adapt it to their needs and the theory provides a framework for addressing those issues. A key to adoption is awareness and acceptance of the innovation in natural social networks. The purpose of this project is to develop and evaluate an approach to increased access to information and support for African American and Hispanic families of CYSCHN from a range of geographic locations and backgrounds that is grounded in Diffusion of Innovation theory, reflects the principles of cultural and linguistic competence and can be implemented by existing Family-to-family centers. Research activities will address the problem stated above and address two MCHB Strategic Research Issues: Strategic Research Issue #I. Public health service systems and infrastructures at the community, State and or national levels, as they apply to different maternal and child health populations based on demographic, epidemiological, and/or other factors. Strategic Research Issues #II : MCH services and systems of care efforts to eliminate health disparities and barriers to health care access for MCH populations. The methodology consists of a series of focus groups and a Delphi procedure to determine the natural social networks of African American and Hispanic families (English and Spanish speaking) in three states and a series of key informant interviews of members of those social networks to inform and test a Diffusion of Innovation based social marketing approach to increase the number of families from the target populations that connect with the parent centers in the study. In addition to scholarly articles, the dissemination efforts will also include materials to enable the nation network of Family-to-family organization to utilize this model and the lessons learned from the project.Publications
Listed is descending order by year published.
Bronheim SM, Soto S, Anthony BJ. Addressing disparities in access to information for Hispanic families of children with special health care needs. J Health Dispar Res and Pract. 2015;8(2):29-46.
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