Education of new parents of children with special health care needs begins with the first contact with the health care team. Parents may feel overwhelmed and need other systems that will reinforce their knowledge and skill in a context that is family focused, culturally competent, and familiar. Our program is based on the inclusion of older adult volunteers who have raised a child with sickle cell disease (SCD) to improve readiness of new parents to better utilize information and education surrounding appropriate care and treatment of their special needs child. Our goals are to develop role models for well-child care, and to provide resource persons for child-rearing practices of SCD children. These volunteers are to spend two hours per week over a 2-year period with a family with a newly diagnosed SCD child. In-person contact in the home setting is encouraged, but telephone contacts are permitted.
“Family Friends”, an inter-generational program model, formed the basis of the training program. The initial training consisted of two 5-hour sessions, and included topics relevant to working with families and children with sickle cell disease. Subsequent periodic 1-2 hour sessions were designed to reinforce knowledge and skills. The first nine volunteers are African-American females (age 32-72 years). Seven are mothers or grandmothers of a SCD child. Demographic data of volunteers and new families, SCD knowledge acquisition, and on-going observational data from volunteers in their work with families will be presented. Issues in program replication in other sites or for other diseases will be discussed.
Learning Objectives: 1.Recognize the special educational and social support needs of new families with sickle cell disease 2.Describe the components of an intergenerational program model for medical education
Keywords: Health Education Strategies, Children With Special Needs
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: None
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.