Innovative Partnership for Education and Research of Autism Spectrum Disorder (ASD)

Background: Nurses are conspicuously absent from the roster of professionals caring for people with ASD. Pediatrics and family nurse practitioners are uniquely qualified with a set of assessment and treatment skills to provide comprehensive health care services to individuals and families. Such nurses, when given specialized training in the care of ASD can screen, evaluate, design and deliver family-centered plans of care for affected individuals. Schools of nursing and community services providers may combine their intellectual and technical resources to create a cadre of professional nurses equipped to address the increasing medical and behavioral needs of this population. The purpose of this presentation is to describe the strategic planning and products of an initiative to establish an innovative education and research partnership between the University of Pennsylvania-School of Nursing and the Center for Autism.

Objectives: The objectives of the initiative were to (1) describe a plan for a partnership between the UPENN School of Nursing and the Center for Autism (CFA) and (2) identify a agenda for community-based participatory research among nurse scientists and scholars from UPENN, clinicians from the CFA, and community stakeholders.

Methods: The planning committee obtained sponsorship from The Philadelphia Healthcare Trust in 2009 to begin an evaluations study to assess potential and explore partnership options.  The team conducted a gap analysis of training experiences in the School of Nursing and nursing service needs of individuals with ASD and their families. Data included curriculum content in ASD from baccalaureate, master and doctoral level nursing courses and programs. Current research priorities proposed by the IACC were aligned with clinical data currently or potentially available through the client population of CFA.

Results: Typical for programs of nursing, only two BS level courses and one Masters level course has content on ASD and this is limited to 1.5 hours per course over 4 years. There is a conspicuous absence of nurses working with individuals with ASD and their families in community agencies and none have specialized training in ASD. Medical and treatment needs (pharmacotherapy, etc.) of children with ASD are increasing. A substantial cohort of scholars and clinicians are qualified and interested in ASD research, and data are available to study prevention, earlier detection, lifespan perspective, and community engagement in ASD research.

Conclusions:

Over the next 5 years we will establish a Partnership for the Integration of Care of Autism Spectrum Disorder (PICA). The partnership  will address an immediate need for a nursing work-force by offering continuing education programs; address the long-term need for a stable nursing work-force by establishing systematic education of nurses in the care of individuals with autism; and establish a program of community-based participatory research that includes a research agenda that complements the priorities of the Interagency Autism Coordinating Committee, a process for collecting; storing and retrieving data on patients and families treated at the Center for Autism; and completed pilot data to support an application for external funding. A pilot project has been developed.