For over a decade, the Child Neurology Foundation (CNF) has fielded both informational and emotional support requests from families living with neurologic conditions. These families represent those living with chronic and complex conditions who are navigating the healthcare system. In 2015, CNF began to utilize parents as coaches to respond to these peer requests. In 2016, a partnership with the HALI Project allowed for expansion of this peer support program and its redefinition as the Family Support and Empowerment Program.
From February to early April 2017, this partnership has served families from 21 states and 19 countries solely through word-of-mouth promotion. From this history, CNF has collected qualitative, self-reported data espousing the benefits of peer support; however, comparative effectiveness research regarding the various formats of peer support (e.g., virtual versus face-to-face models) to this targeted population is lacking. The Tier I grant would enable a better understanding of the utility of virtual peer support (via the use of appropriate technology) for families living with pediatric chronic conditions versus families receiving face-to-face peer support (in medical clinics, the local community, or local disease advocacy groups). Is a virtual peer connection as effective as face-to-face support in improving health adherence to treatment plans? Is the actual connection with a peer the salient variable in constructing a support model, rather than the mode of connection? Are different peer support approaches more suitable for certain situations, such as information sharing versus emotional support? Together, this project’s partners will begin to formulate a research-based approach to answer these questions.