Virginia Commonwealth University

Problem:

Children with special needs and their families want to benefit from therapies, treatments, and educational strategies. The MCH workforce wants to insure that such strategies are safe, effective, and grounded in research evidence. Understanding of and participation in pediatric clinical trials/research is a challenge for clinicians and families.

Goals and Objectives:

Goal 1: To develop a web-based training module for MCH trainees and health care professionals about strategies to discuss research and research participation with families of children with autism and genetic conditions. Objective 1.1 By December 31, 2007 a LEND discussion board on research participation will be developed and implemented with input from LEND faculty across the network. Objective 1.2 By June 30, 2008 a script will be developed for the web-based module. Objective 1.3 By December 31, 2008 the web-based training module will be developed and prepared for field testing. Objective 1.4 By June 30, 2009 the web-based training module will be field tested and evaluated by at least eight LEND trainees and eight health professionals in three different states. Objective 1.5 By December 31, 2009, the web-based training module will be revised and modified based on input from the field test. Objective 1.6 By June 30, 2010, the web based training module will be disseminated nationally to all MCH training programs, and continuing education credits will be offered. Goal 2: To develop a video/CD to engage families of children with special health care needs to explore research opportunities and consider participation in research. Objective 2.1 By April 1, 2008 family faculty in at least three LEND programs will collaborate in development of a barriers and opportunities document about research participation. Objective 2.2 By April 1, 2009 a draft video/CD script will be written in collaboration with the VCU News Services. Objective 2.3 By November 1, 2009 a video/CD script will be prepared and field tested with at least three parent advocacy or support groups. Objective 2.4 By April 1, 2010, a video will be downloadable from the website of the Partnership for People with Disabilities.

Methodology:

In Year 1 faculty in the LEND network will participate in a process to identify training content, as well as the barriers and opportunities for research participation using a discussion board format with input from LEND faculty. Information from this process will be used to develop scripts for the web-based module targeted for trainees and health professionals and a video/CD targeted for family members. In Year 2, the web-based module and video/CD will be developed, and field tested. The web-based module will be field tested by faculty and trainees in at least three LEND programs, and the video/CD will be field tested in at least three different parent support or advocacy groups. In Year 3, the module and video/CD will be revised using input from the field test. Both products will be disseminated nationally to all MCH training programs, as well as targeted professional and family organizations. Follow-up evaluations will be sent to each recipient site at three months post dissemination to determine how they were used and the effectiveness of the training materials. The Project Coordinator will coordinate these activities in collaboration with a project staff including a parent consultant/content specialist and faculty in media services. HP 2010 Objectives: The following Healthy People 2010 objectives will be addressed: Objective 11-3 increase the proportion of health communication activities that include research and evaluation Objective 11-5 increase the number of centers for excellence that seek to advance the research and practice of health communication Objective 16-14 reduce the occurrence of developmental disabilities Objective 23-17 increase the proportion of Federal, Tribal, State, and local public health agencies that conduct or collaborate on population-based prevention research

Coordination:

This KP project will include collaboration with LEND programs across the network for input in the discussion board on research participation and the development of a document on research opportunities and barriers. In addition at least three training programs in the LEND network will participate in the field test of the web-based module and three family support or advocacy groups will participate in the field test of the video/CD. The dissemination plan will involve contacts with all MCH training programs and University Centers for Excellence in Developmental Disabilities (UCEDDs), as well as targeted health professional organizations and family/parent support and advocacy groups. In the field test and dissemination of this KP project Va-LEND will collaborate with colleagues in the Virginia Title V program to provide input from MCH leaders in our state.

Evaluation:

An evaluation plan, integrated with the Va-LEND evaluation, will monitor the fidelity of the project implementation, examine the effectiveness of implementation strategies and assess project outcomes. Evaluation is part of the project planning, management and improvement. The evaluation of the developed products, a web-based module for health care professionals (Goal 1.) and a video/CD targeted for family members (Goal 2.) is integrated into the project plan and includes content development based on current needs assessment data and a field test with multiple centers and groups prior to the dissemination of the final product. In addition, after the products are disseminated an evaluation will be conducted to solicit feedback on the utility of the training materials.