ACCELERATE HEALTH CARE

1. ACCELERATE HEALTH CARE • Session B: Platform Presentations • May 15, 2017 Delaware Clinical and Translational Research (DE-CTR)/ ACCEL Community Engagement and Outreach Conference www.de-ctr.org

2. Community Research Exchange May 15, 2017 Toward more inclusive school-based public health surveys:Increasing inclusion of youth with disabilities in the Youth Tobacco Survey Patricia L Maichle Elizabeth Dubravčić Steven S. Martin Director Evaluator Senior Scientist Delaware Developmental Delaware Health and Social Services Center for Drug and Health Studies Disabilities Council Division of Public Health University of Delaware ACKNOWLEDGMENTS: University of Delaware Center for Disabilities Studies and Center for Drug and Health Studies; State of Delaware Department of Health & Social Services, Division of Public Health; ACCEL-ACE work is supported by an Institutional Development Award (IDeA) from the National Institute of General Medical Sciences of the National Institutes of Health under grant number U54-GM104941 (PI: Binder-Macleod).

3. Introduction – how this study came to be • Disability History • Victim Rights Task Force and DDC • How Do We Get Included? • Analysis of Data • Outcomes for Students and the Public • Issue is in the National Eye

4. Delaware high school students’ nicotine use by self-report of a physical disability or self-report of a cognitive disability Self-report of physical disability (hearing, sight, or ability to climb stairs), 10.5% of sample of 2,753 Self-report of cognitive disability making it difficult to concentrate, remember, or make decisions, 18.5% of sample of 2,753 Source: Delaware High School YRBS, 2015 (all differences stat. sig p < .05) Disability Question additions to DE YRBS were supported by this ACE award

5. Our Advisory Panel Teresa Avery, Executive Director Autism Delaware Sarah Celestin, Ed. Associate, Exceptional Children Resources Work Group Delaware Department of Education Beth Courtney-Long, Health Scientist Disability and Health Branch Centers for Disease Control Amy Haughey, Transition Specialist Smryna School District Mary Hicks, Instructional Coach Delaware School for Deaf Karen Latimer, Assistive Technology Specialist UD Center for Disability Studies Maria Lepore-Stevens, Orientation and Mobility Instructor Division for the Visually Impaired Judi MacBride, Training Coordinator/Family Liaison UD Center for Disability Studies Daniel Madrid, Director Division for the Visually Impaired Patricia Maichle, Senior Administrator Delaware Developmental Disabilities Council   Heidi Mizell, Resource Coordinator Autism Delaware Keith Morton, Executive Director Parent Information Center of Delaware Esley Newton, Instructional Coach UD Center for Disability Studies Monica Quann, Transition Specialist NCC Vo-Tech District Wendy Strauss, Executive Director Governor’s Advisory Council for Exceptional Citizens Kathy Ware, Survey Administrator UD Center for Drug & Health Studies

6. Advisory Panel • Our way of engaging the community in all aspects of the research • Included representatives from disabilities community, school community and the surveys’ federal funding partner, CDC. Project team represents the research community and public health Key Roles: • Defining project objectives and long-term goals • Providing insight on key issues around identifying & providing accommodations; student engagement, educational support logistics & data systems • Obtaining some data, identifying pilot sites, designing disability screening questions • Interpreting findings & making recommendations regarding protocol changes • Dissemination of findings

7. FRAMING THE PROJECT THROUGH PARTICIPATION One way to explain this project is to explore the boundaries for who is, and is not, included in the sample for the survey. This work seeks to include more students by redefining the boundaries and moving the “lines of participation.”

8. Aims / Objectives PART 1 • (1) Assess the extent of current exclusion/inclusion of SwD • (2) Explore the feasibility of surveying excluded groups of students using a standard YTS, with or without accommodations • (3) Develop recommendations for changes in CDC’s health survey protocols that allow for greater inclusion of SwD while maintaining survey integrity and student anonymity. PART 2 • (4) Develop a and pilot disability status indicator • (5) Assess disparities in health risks and outcomes for SwD

9. What we did • Examined DOE data on student enrollments, disability, and accommodations for state testing • Examined YTS Administrative data • Survey Accommodation Literature (DOE Guidelines) • Conducted Key Informant Interviews • Created New Electronic Survey w/ signed interpretation video clips (ASL) • Piloted YTS – with and without accommodation @ 3 sites / 3 disability groups; Conducted follow-up focus groups • Created new disability status indicator, piloted in 2016 YTS (N=4000) • Now developing Recommendations for a new survey protocol

10. QU 6. Do you use or rely upon any of the following: (You can CHOOSE ONE ANSWER or MORE THAN ONE ANSWER) • A magnifier, large print, text to voice reader or Braille to help you read • A hearing device, sign language interpreter or teacher of the deaf • Wheelchair or other mobility aid • Classroom Aide or Paraprofessional • Life Skills Coach • Mental health counseling or therapy • Medicine prescribed for you by a doctor • No- I do not use any of the above” • QU 7. The Individualized Education Program (or IEP) and Section 504 Accommodations Plan are formal plans to help students who use accommodations in their school work and related activities. Do you have an IEP or 504 Plan?” • Yes, I have an IEP • Yes, I have a 504 Plan • No, I do not have an IEP nor 504 Plan • Not Sure”

11. What we found PART 1 • More than 95% of all public school students, and 68% of students with disabilities are included in the current youth survey sampling frame • Demonstrated that for two of the three groups we studied, the standard health surveys can be administered with or without accommodation • The nature of accommodations and supports that may be required depend in part on the nature of the disability. Motivation can play a key role in participation for students w/ behavioral health issues. • Many accommodations are already provided through the student’s educational support (IEP) • Electronic surveys can provide many of the required accommodations • Attention to survey questions (incl. response items) can increase accessibility and improve overall survey quality (item responses rates, comprehension and reliability) • “Making it Important,” helping students understand the value of the survey can help increase participation and survey completion rates. • For students whose accommodations may compromise their anonymity, there is scope and interest in conducting a modified health survey.

12. N = 40,287

13. What we found PART 2 • 17.4% of HS students participating in the standard 2016 YTS have a disability, based upon the new two-item disability indicator • There are significant differences in tobacco use, susceptibility to initiation and perceived risk of tobacco use between students with and without disabilities, based upon the 2016 YTS data using the new disability indicator questions.

16. Next steps • Additional research is needed to develop alternative version(s) of the surveys and protocols that will assure anonymity for students currently unable to participate independently due to cognitive and/or communication impairments. • Recommendations to CDC on protocol changes re the sampling and accommodations to be rolled out in Delaware’s 2018 YTS • Dissemination of findings • Local Delaware stakeholders- ACCEL/ACE ; Delaware Developmental Disabilities Council, Youth Prevention Coalition • Nationally – Conference Presentations – APHA; AUCD; & NCTOH • Next Peer Reviewed Journal article(s)

17. Thank –you!Eileen SparlingJane Donovan Contact: PatMaichleLiz Dubravčić Steve Martin pat.Maichle@state.de.uselizabeth.dubravcic@state.de.usmartin@udel.edu (302) 739-3333 (302) 744-1083 (302) 831-6107

18. “Instilling the Art of Happiness in Community Dwelling Older Adults” Goodwin S., Orsega-Smith B., Greenawalt K., Turner J., Rathie E. Community Partner: Vicki Sheraton, Director of Howard Weston Senior Center Beverly McCool, Director of Claymore Senior Center

20. Purpose • This was a feasibility study to examine if an undergraduate positive psychology course called the Art of Happiness could be adapted to community senior centers with the overall aim of enhancing positive mental health.

21. Aims To enhance positive mental well-being in older adults • Primary outcome is to improve subjective happiness • Secondary outcome is to decrease negative mood states in older adults

22. Methods • Feasibility study conducted at 2 local senior centers • 8-week intervention • Pre-post design • Measured gratitude, life satisfaction, depression, stress, mindfulness, arousal states, and subjective happiness • Assessed demographics and general health information

23. Senior Center Directors • Aided in recruitment • Assisted in communication with adults • Provided space and AV support • Howard Weston Director was an actual participant

24. Program • Participants received book and journal for reflections • 90 weekly classroom sessions • Lecture/discussion on different weekly topics • Activities relating to weekly topics • Discussions on related homework assignments

25. Topics • Forgiveness • Transforming Suffering/ Shifting Perspective • Mindfulness • Humor • Defining Happiness • Stress Management • Reflecting on Happiness • Compassion/ Human Connection

28. Participant Characteristics • Mostly married (43.8%), female (87.5%), Caucasian ( 91%), age range 53-93 (mean age of 74 years) • Health Problems: 51% overweight/obese, 15.6% diabetic, 72.9% hypertensive, 69.4% high cholesterol & 48.9% other health issues

29. Results • Subjective happiness increased (p<.0001) • Satisfaction with life increased (p<.05) • Depression scores improved (p<.001) • Tension and tiredness scores decreased (p<.0001) • Mindfulness scores improved (p<.005)

30. Participants Lessons Learned • “I’m more aware that I can manage my feelings by taking time to recognize them, assess them and deal with them. I also find myself appreciating more of the little daily things that make me happy instead of waiting for the big events.”

31. Impact On Participants • “I have personally seen at least 2 from the class that come to the center on a regular basis (I don't want to say names) that seem to be more upbeat about life, seem to be less critical of other people, in general just a little happier.” -Beverly McCool, Claymore Senior Center

32. Impact on the centers • “I’ll be honest with you for me personally here in the office it has, the feedback I’ve gotten back from the members as far as the positives from the class has kind of pushed me in a direction to seek out other similar programs that will help with mental health…So it has made me more aware of the need for programs like the art of happiness.” - Beverly McCool, Director Claymore Senior Center

33. Impact on centers as a whole • “When I first read that question, I thought, was there an impact on the center as a whole? My initial thinking was probably not. But then I thought, no there really was, because even though the entire center wasn’t involved in it, the people that took the class- its like tentacles on a jelly fish- the stuff that they are spreading is catching on to the people who didn’t take the class- they are spreading the things they learned around the senior center.” - Vicki Sheraton, Director Howard Weston Senior Center

34. Differences noticed at the centers • “Yes a lot of much more positive in nature- not as likely to snap at someone else as they used to be. That’s probably the biggest difference I noticed.” -Vicki Sheraton, Director Howard Weston Senior Center

35. Conclusion • Partnering with local senior centers and offering this type of course may positively impact the quality of life and positive mental well-being of older adults.

36. ?Questions?

38. Family psychosocial care model for congenital heart disease: A crowdsourced study Erica Sood, PhD Nemours Cardiac Center Alfred I. duPont Hospital for Children

39. Study Information Overarching Aims: • To apply online crowdsourcing to the development of a psychosocial care model for families of infants with CHD to prevent parental traumatic stress and ultimately improve child outcomes • To inform psychosocial standards for CHD Funding Source: DE-CTR ACCEL Pilot grant Timeline: December 2016 – November 2017

40. Researchers PI: Erica Sood, PhD Mentor: Anne Kazak, PhD, ABPP MUSC Co-I: Sinai Zyblewski, MD UD Qualitative Consultant: Allison Karpyn, PhD

41. Community Collaborators Stacey Lihn (Sisters by Heart) Trent Neely (Bros by Heart) Melanie Toth (Pediatric Congenital Heart Association) Amy Randall (Mended Little Hearts)

42. Clinician Collaborators Elizabeth Lucey Boyle, RN (MUSC) Conrad Williams, MD (MUSC) Emily Delaplane, MSW (Nemours) Abigail Demianczyk, PhD (CHOP) Cheryl Brosig, PhD (Children’s Hosp of Wisconsin) Jena Tanem, APN (Children’s Hosp of Wisconsin)

43. Presentation Agenda Rationale for the study Overview of study methodology Role of community collaborators Community engagement in this project

44. Congenital Heart Disease • Most common birth defect (8 per 1000 live births) • Twenty-five percent have complex form, requiring intervention during infancy • unpredictable medical course • emergent admissions to the cardiac ICU (CICU) • invasive procedures • prolonged hospitalizations Hoffman & Kaplan, 2002, JACC

45. Family Experience During Hospitalization • Diagnosisoften made at birth • Mother remains at birthhospitalwhile baby isemergentlytransported to children’shospital • Disruptions in normative parent-infant bonding • feeding, holding, comforting • Parents are often far from home, support networks and other children • CICU and highlytechnologic care canbeintimidating Jimmy Kimmel Live!

46. Parental Stress • Higher risk for parenting stress, anxiety/depression, poor QOL • Approximately one-third of parents report clinically significant symptoms of traumatic stress • Parental stress predicts child emotional and behavioral outcomes and QOL, even many years later Davis et al., 1998, JPP; DeMaso et al., 2014, J Peds; Franich-Ray et al., 2013, JPP; Visconti et al., 2002, JDBP

47. No Formal CHD Psychosocial Standards

48. Research Needs • Identifying a model of psychosocial care that is acceptable and feasible to all stakeholders • Requires interprofessional and community collaboration • 100 Parents • 50 Healthcare providers (HCPs) • 20 Leaders of CHD organizations providing parent support, education and advocacy

49. Specific Aim 1 • To identify stakeholder “crowd” perspectives on best practices and barriers to promoting key domains of family-based psychosocial care for CHD: • Family integrated care • Formalized parent-to-parent support • Anticipatory guidance, orientation and discharge preparation • Mental health screening, prevention and intervention • Assessment of perceived social support and coping style • Assessment of financial burden, linkages and referrals • Sibling support • Palliative care, grief and loss • Caring for the caregiver to prevent burnout/secondary trauma

50. Specific Aim 2 • To incorporate the knowledge, experience and perspectives gained in Aim 1 to develop a family-based psychosocial care model for CHD, and to iteratively refine this model with stakeholder crowd input. • Propose aspects/components of psychosocial care model as they are developed for immediate crowd input. • Crowds will provide feedback/edits through open-ended and poll responses and direct editing capabilities. • Model/materials will be refined until crowd consensus determines they are acceptable, feasible, meaningful. • Completion of Aim 2 will result in a family-based psychosocial care model for CHD ready for pilot testing.