Integrating pyscho-education and pyscho-social support within the UAB TSC Clinic
Project Description:
Expand interdisciplinary team roles within the TSC Clinic to address needs for psychosocial support and psychoeducation for families and patients with TSC. Program will identify most frequent psychosocial and psychoeducation needs of families, develop and collate electronic and paper resources specific to Alabama and other areas of the region served by the clinic, and develop and pilot the role of a family navigator and consulting psychologist within the clinic.
Current Barriers: Tuberous sclerosis complex (TSC) is a genetic disorder that causes tumors to form in the brain, eyes, heart, kidney, skin, and lungs. This results in a number of medical complexities (e.g., seizures, visual impairment, decreased kidney function) and often involves significant interventions, including neurosurgery to limit the impact on development and behavior. Another feature of TSC is increased prevalence of autism spectrum disorder, intellectual disability, and TAND (TSC-associated neuropsychiatric disorders), which impacts patient and family functioning in the home, school, and community settings and often warrants additional interventions. Navigating services and supports available in the school system and community can be challenging and many caregivers report difficulty accessing care outside of the medical setting. Caregivers may be unaware of resources that exist in their areas and often have difficulty following up on recommendations made in the clinic setting. Finally, given families' focus on improved physical health for the TSC patient, the behavioral and emotional challenges in TSC are overlooked as priorities for intervention.
Current Support: The UAB TSC Clinic is a multidisciplinary clinic severing over 500 individuals of TSC with an array of pediatric and adult subspecialists. Currently the clinic has funding from NIH grants and the state for the TSC clinic nurse coordinator and research projects but there is no funding for addressing the needs of the psychosocial support and psychoeducational needs of the patients and their families.
Keyword(s):
Mental/Behavioral Health – Autism, Developmental Disabilities, Early Childhood – General, Mental/Behavioral Health – General , Children, Adolescents, and Young Adults with Special Health Care Needs
Core Function(s):
Performing Direct and/or Demonstration Services, Developing & Disseminating Information
Area of Emphasis
Education & Early Intervention, Health-Related Activities, Quality of Life
Target Audience:
Family Members/Caregivers, Adults with Disabilities, Children/Adolescents with Disabilities/SHCN
Unserved or Under-served Populations:
Racial or Ethnic Minorities, Disadvantaged Circumstances, Limited English, Geographic Areas, Rural/Remote, Urban, Specific Groups
Primary Target Audience Geographic Descriptor:
Regional
COVID-19 Related Data:
N/A
