Assessing Children/Young Adults with Special Health Care Needs: A Survey of the Parent/Guardian Perspective

The Children’s Medical Program (CMP), Mississippi’s Title V Children and Youth with special healthcare needs (CSHCN) program, provides care coordination and assists with access to specialty services for enrolled children at the public health district level. Gaps in services for children and youth with special health care needs in Mississippi need to be identified. A survey tool was developed for inquiry into parent/guardian concerns. A survey tool was developed for inquiry into parent/guardian concerns. The “CYSHCN in Mississippi Parent/Guardian Survey” included 15 quantitative and qualitative items. The survey was administered from August 2010 to May 2011 at specialty satellite clinics and Blake Clinic, a multidisciplinary clinic. The parent/guardian completed a survey for each child/young adult who was receiving CMP benefits. Two-hundred and twenty-five surveys were completed. Ninety-five percent (95%) of respondents reported satisfaction with their involvement in making decisions with the healthcare team. Communication with the healthcare providers rated at least good by 86% (very good-53%, good-33%). Forty-four percent (44%) of  respondents reported they didn’t know or weren’t sure about available support services. Respondents reported high levels of satisfaction and communication regarding their child/young adult’s healthcare.  Recommendations made for future improvement of program services include: evaluate the satellite clinic needs in each public health district, increase knowledge and utilization of support services, collaborate with medical providers on the development of  a guide for transitioning adolescents from pediatric to adult services, and expand and revise the survey based on current results and national data for future administration.