Planning Family-Friendly Webinars: Navigating the Medical System for Children with Autism Spectrum Disorder Jessica Scott 1, Amy Matz 2, Nancy Murray 3, Benjamin Handen 4, Miya Asato 5 LEND Center at the University of Pittsburgh and Children’s Hospital of Pittsburgh of UPMC Background • Partnerships • Funding through the Autism Treatment Network (ATN) and Autism Intervention Research Network on Physical Health (AIR-P ) was awarded to the Pittsburgh LEND Center to support the development of telemedicine/webinar trainings. The Pittsburgh ATN and LEND Center have shared a collaborative relationship since the inception of the Pittsburgh ATN. • The Arc of Greater Pittsburgh, ACHIEVA, is a nonprofit parent-founded organization that provides services and support to individuals with intellectual disabilities and their families in Western Pennsylvania. ACHIEVA has an established webinar program and recording resources. LEND trainees designed an earlier series of ASD webinars for the ACHIEVA website. • ABOARD’s Autism Connection of Pennsylvania, is a non-profit organization that provides support to families and individuals specifically impacted by ASD. Trainees approached ABOARD for support with reaching families impacted by ASD. Record Webinars The physical webinar recording resources are located in ACHIEVA’s offices; however, the webinars could be recorded remotely via the phone thus allowing the trainees to easily accommodate guest speakers. Each recording began with an introduction to the topic by the LEND trainees, followed by questions for the guest speaker. Publicize the Webinars Webinars were advertised via email blasts by ACHIEVA, ABOARD, the Pennsylvania Medical Home Initiative, Include Me From the Start, and the Early Intervention Program at the University of Pittsburgh. A link to the webinars also appeared on several of the participant’s personal and organizational Facebook pages and Twitter feeds. Collect Viewership and Survey Feedback Trainees obtained approval from the University of Pittsburgh’s Internal Review Board to conduct an online survey following the webinar. Webinar viewers are automatically directed to the optional survey where they can provide trainees with valuable feedback. Discussion “Navigating the Medical System” is the second LEND – ACHIEVA partnership project to produce webinars for families impacted by ASD. According to viewership results, the series “Navigating the Medical System for Children with Autism Spectrum Disorder” has received higher volumes of traffic in a shorter period of time than the previous webinars. Thus far, the webinars have achieved 64.8% total views and in 1/10th the time when compared to the last webinar series. These increases may be the result of the university-community partnerships, which expanded avenues for promoting webinar viewership. In addition to increased viewership, the process of creating this webinar series showed collaborative capacity between organizations that had not explicitly worked together before. Also, LEND trainees had the added benefit of becoming more familiar with regional resources that will help them better assist families they serve in the future. Webinar content was shaped by both professional and family expertise and by principles of family centered practice . Focus group discussion lead trainees to identify topic areas of importance to families who are experienced at interacting with the medical system and professionals. Trainees incorporated family members as guest speakers to ensure that the webinars represented both professional and family perspectives. As a result, the webinars created provide a breadth of detailed information and advice. At this time, survey results are consistently positive. Trainees will continue to review survey feedback to assess the current series and help shape the content of future webinars. The online format has other benefits as well. Guest speakers are able to participate remotely via the phone, opening up the possibilities for collaboration and making the process more flexible. It also allows families greater accessibility to information, as well as building the capacity to reach wider audiences. All ACHIEVA webinars are free to access and individuals with internet access may listen to webinar recordings at their convenience. Despite making information about medical conditions and resources available online, webinar viewership remains low. Trainees would like to examine barriers families face to accessing webinars and explore ways to better attract viewership in the future. Certain genetic syndromes, medical conditions, and behavioral symptoms are common in children diagnosed with Autistic Spectrum Disorders (ASD). In many cases, co-morbidities such as sleep disorders, epilepsy, digestive difficulties, and anxiety compound the challenges of caring for children with ASD and often require specialty care. For these reasons, it is important for children to have a thorough medical evaluation to clarify their diagnosis and/or confirm other co-existing conditions. Also, once diagnosis is confirmed, children with ASD must obtain ongoing medical care. Unfortunately, navigating the medical system may be a challenging process for families. The goal of this university-community partnership is to provide family-centered education on navigating the medical system for families of children with ASD that are accessible via a webinar training format. Objectives • Develop university-community partnerships. • Present common medical considerations for children with ASD and provide suggestions generated by both professionals and families on how to navigate the medical system for children with ASD. • Increase the accessibility of knowledge about medical considerations, specialty care, and resources for families impacted by ASD. • Family Focus Group • A flyer was distributed electronically by ABOARD to recruit parents who were interested in participating in a focus group on navigating the medical system and that met the following criteria: • Parent of a child with ASD between the ages of 4 and 8 years. • Received an ASD diagnosis in the last 2-6 years. • Trainees prepared open-ended questions to guide the group. Through shared discussion, parents offered their personal experiences and perspectives related to navigating medical systems. The Pittsburgh LEND Co-Director and Pediatric Neurologist, Dr. Miya Asato, was present to answer questions related to medical issues following the conclusion of the focus group. Participants received $25 as compensation for their time. • Webinar Content • Common Health Conditions Associated with ASD, Guest Speaker: Dr. Miya Asato, Program Director, Neurodevelopmental Disabilities Residency Program and Associate Director, Child Neurology Residency Program, Children's Hospital of Pittsburgh of UPMC • The Concept of the Medical Home for Families of Children with ASD, Guest Speaker: Molly Gatto, MHA, Director, Pennsylvania Medical Home Initiative • Accessing Community Resources for families of Children with ASD, Guest Speaker: Marie Mambuca, Support Director and Service Coordinator, ABOARD’s Autism Connection of PA, and parent of an adult son with ASD • Preparing for Doctor’s Visits for Families of Children with ASD, Guest Speakers: Robyn Neft, MSN, CRNP Pediatric Nurse Practitioner, Neurology, & Christine Buffington, Inclusion Consultant, Include Me From the Start. Both guest speakers are parents of children with ASD Outcomes Webinars from the “Navigating the Medical System for Children with Autism Spectrum Disorder” series were viewed 70 times over approximately 14 days, which equates to approximately 5 views a day. Comparatively, the previous ACHIEVA webinars on ASD produced by LEND trainees received 48 views within their first two weeks online, which comes to an average of only 2 views a day. The following graph illustrates the number of views per topic for the webinar series: Response to the post webinar surveys has been limited, however the feedback gathered thus far consistently reports that viewers would recommend the webinars to others. Respondents either agreed or strongly agreed that the webinars increased their knowledge; that enough time was allotted for the webinars; and that the speakers were knowledgeable about the presented topics. Respondents describe themselves as professional/family members and self-advocate/professionals. Most respondents learned of the webinars through the ACHIEVA website, or from a coworker/colleague. Respondents were primarily from Allegheny County in southwestern Pennsylvania. Process ( ( Conclusions • University-community partnerships may help cast a wider net for reaching families and are mutually beneficial. • Family-professional partnerships can generate product content that increases knowledge for family members of children with ASD. • Webinar technology can be a useful tool for encouraging professional partnerships, as well as reaching families.