Evaluating the “Family-Centered” Approach of Pediatric Multidisciplinary Down Syndrome Clinics: A Parents’ Perspective

Down syndrome is the most common genetic cause of intellectual disability. Individuals with Down syndrome usually display mild to moderate intellectual disability, developmental delay, characteristic facial features, and an increased risk for birth defects and various medical problems. Multidisciplinary clinics were established to address the multi-system health concerns for Down syndrome, increase adherence to medical management guidelines, and provide coordinated and comprehensive care for the patient. Research has examined the beneficial effect of a multidisciplinary approach to patient care and medical outcomes; however, no studies have been done which evaluate the psychosocial aspect of the care provided. We hypothesized that families whose children attend a multidisciplinary clinic will report a higher level of psychosocial support provided by their healthcare team than those families who receive care from independent practitioners. An online survey was distributed through local Down syndrome support groups and national Down syndrome organizations with the intention of identifying trends involving psychosocial support among families of children with Down syndrome. Responses from 415 parents were used for statistical analysis. Results consistently indicated that significantly higher levels of psychosocial support and care are provided by multidisciplinary Down syndrome clinics. The survey also collected parents’ experiences with and opinions of pediatric genetic counseling. This qualitative data was analyzed using grounded theory methods and identified six major themes related vi to the specialty. Four themes related to genetic counseling outcomes identified the experience as: (1) specialized, expert information, (2) opportunity for discussion, (3) comprehensive medical care, and (4) generally unhelpful. Two additional themes related to participants’ lack of direct experience with genetic counseling were also identified as (5) negative perceptions and experiences and (6) general misunderstanding or lack of knowledge of the profession