The South Main Parent Program provides an innovative, culturally sensitive model of community health education. The Parent Program started in 2006 in collaboration between Ninos Especiales/Familias Fuertas and the Utah Regional Leadership Education in Neurodevelopmental and related Disabilities (URLEND) training program, with funding through Healthy Tomorrows (an AAP and HRSA grant). This program annually offers ten presentations for Hispanic families of children and youth with special health care needs (CYSHCN), to build families’ health competencies by providing information they request and assisting them to develop strategies to better access services and supports. The speakers are multidisciplinary trainees in the URLEND program including emerging leaders in special education, physical therapy, nursing, dentistry, pediatrics, social work, psychology, business, audiology, and genetic counseling. Topics this year included: Genetics, Sexuality in CYSHCN, High Blood Pressure, Cholesterol and Diabetes, Cerebral Palsy, Epilepsy, Stress Management, Guardianship, Explaining Disability to Siblings, Parent Psychological Support, and Behavior Management. Program feedback is obtained annually through a focus group with families.
This community-based educational program is successful because it brings together multidisciplinary speakers with families of CYSHCN to share information on health-related topics selected by the families. Incentives are provided for participation. The presentations are translated into Spanish by medically knowledgeable personnel, and Spanish handouts are provided. During the presentations the families have direct access to specialists from a broad range of disciplines, offering new perspectives and enabling a chance to ask questions outside of a medical visit. For example, during a recent presentation on “Genetics” the families were able to ask questions to both a genetic counselor and a pediatrician. The Parent Program also enables families of medically complex children to feel less isolated.
Benefits for the URLEND trainees are also multiple. Trainees work together collaboratively to plan and present the topics requested by the families. This requires interdisciplinary communication, which strengthens the relationships between various types of providers who serve CYSHCN. Tailoring the presentation to a range of educational, cultural, and language backgrounds help trainees build an understanding of the need to provide appropriate information and explanations in their practices as well.
The Parent Program uses a focus group process each year to review the program and make recommendations for the future. Twelve people participated in this year’s focus group. The overwhelming response is that the program provides many benefits. Limitations of the program include lack of feedback on the presentations to the individual presenters and logistical difficulties for some families in accessing the program regularly. Replication of this program requires interested families, diverse speakers, logistical coordination, program structuring and evaluation, medical interpretation, a meeting place with audiovisual equipment, and participation incentives such as transportation vouchers, babysitting, and snacks or gift cards.