Addressing disparities in access to information for hispanic families of children with special health care needs: Increasing use of family-to-family centers

Background: Findings from the 2009-2010 National Survey of Children with Special Health Care Needs reflect significant disparities for Hispanic families in receiving needed services due to lack of information. Federally funded family-to-family centers (F2F) help families who utilize their services gain information. This collaboration between Georgetown University and two F2Fs tests a diffusion of innovation model to increase utilization of F2Fs by Hispanic families. Methods: Focus groups of both English-speaking and Spanish-speaking Hispanic families in two states with a confirming Delphi procedure explored factors related to adopting F2F use and the nature of current family communication networks. Results: Families seeking information at key change points turn to formal sources, although Spanish-speaking families noted that due to language barriers, they also turned to family and friends. Families prefer getting information in one-on-one encounters rather than via technologies. F2Fs being staffed by parents of children with SHN is a relative advantage, and race or ethnicity of the staff was not an essential feature in using F2Fs, although services in Spanish was. Findings indicated that cultural values might impede turning outside the family for support and that concerns about federally funded programs serving all families or being cut impacted families views of using F2Fs. Conclusions: Increasing the use of F2Fs by Hispanic families entails increasing awareness and acceptance by their social networks and by social marketing efforts that focus on factors identified. At the policy level, there needs to be a recognition of the strong preference for person-to-person support rather than technological approaches.