Session A – Platform Presentations May 23, 2016

1. Session A – Platform Presentations May 23, 2016 Visit us at: www.de-ctr.org/community www.de-ctr.org/forum Work 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).

2. A Crowdsourced Social Media Portal for Parents of Young Children with Type 1 Diabetes: Initial Content Development Jessica Pierce, Ph.D. Assistant Research Scientist, Center for Healthcare Delivery Science Tim Wysocki, Ph.D. Co-Director, Center for Healthcare Delivery Science Karen Banta Community Presenter

3. Learning objectives

4. Type 1 diabetes in infants, toddlers, & preschoolers

5. Basic structure of the project

6. Methods Health Care Provider Crowd Family Advisory Committee

7. Yammer

8. Results • Response Rate • Mean = 115 • All questions = 88 • At least 1 question = 152 • No questions = 18 • Average length of replies = 105.6 words • Themes and examples integrated into a Social-Ecological Framework & Taxonomy

9. Social-Ecological Framework COMMUNITY Health care providers SOCIAL CIRCLE FAMILY UNIT Child care Relatives Insurance, Payers, & Pharmacies Marriage PARENTS CHILD WITH T1D Friends Siblings Career Parents as Individuals Pre- school T1D Education & Advocacy T1D Friends Family as a Whole Laws & Regulations Peers and their Parents Health care organizations

10. Child with T1D Taxonomy

11. Child with T1D Taxonomy

12. Future Directions

13. Questions? Jessica.Pierce@nemours.org

14. References • Cameron, F. J. (2015). The impact of diabetes on brain function in childhood and adolescence. Pediatric Clinics of North America, Aug., 62 (4), 911-927. • Cole, P. M., Dennis, T. A., Smith‐Simon, K.E., & Cohen, L. H. (2009). Preschoolers' Emotion Regulation Strategy Understanding: Relations with Emotion Socialization and Child Self‐regulation. Social Development, 18, 324-52. • Cathey, M., & Gaylord, N. (2004).Picky eating: a toddler's approach to mealtime. Pediatric Nursing, 30, 101. • Dabelea, D., Bell, R. A., D'Agostino Jr., R.B ., Imperatore, G., Johansen, J. M., Linder, B., et al. (2007). Incidence of diabetes in youth in the United States. JAMA: the Journal of the American Medical Association, 297, 2716-24. • Herbert, L. J., Monaghan, M., Cogen, F., & Streisand R. (2014). The impact of parents' sleep quality and hypoglycemia worry on diabetes self-efficacy. Behavioral Sleep Medicine, 1, 1-16. • Hilliard, M. E., Monaghan, M., Cogen, F. R., & Streisand, R. (2011). Parent stress and child behaviour among young children with type 1 diabetes. Child Care, Health and Development, 37, 224-232. • Monaghan, M., Herbert, L. J., Cogen, F. R., & Streisand, R. (2012). Sleep behaviors and parent functioning in young children with type 1 diabetes. Children’s Health Care, 41, 246-259. • Monaghan, M., Herbert, L. J., Wang, J., Holmes, C., Cogen, F. R., & Streisand, R. (2015). Mealtime behavior and diabetes-specific parent functioning in young children with type 1 diabetes. Health Psychology, 34(8), 794-801. • Monaghan, M. C., Hilliard, M. E., Cogen, F.R., & Streisand, R. (2009), Nighttime caregiving behaviors among parents of young children with Type 1 diabetes: associations with illness characteristics and parent functioning. Families, Systems and Health, 27, 28-38. • Patterson, C. C., Dahlquist, G. G., Gyürüs, E., Green, A., & Soltész, G. (2009). Incidence trends for childhood type 1 diabetes in Europe during 1989–2003 and predicted new cases 2005–20: A multicentre prospective registration study. Lancet, 373, 2027-2033. • Patton, S. R., Dolan, L. M., & Powers, S. W. (2006) Parent report of mealtime behaviors in young children with type 1 diabetes mellitus: Implications for netter assessment of dietary adherence problems in the clinic. Journal of Developmental and Behavioral Pediatrics, 27, 202-208. • Patton, S. R., Dolan, L. M., Smith, L. B., Thomas, I. H., & Powers, S. W. (2011). Pediatric parenting stress and its relation to depressive symptoms and fear of hypoglycemia in parents of young children with type 1 diabetes mellitus. Journal of Clinical Psychology in Medical Settings, 18, 345-352. • Perfect, M. M., Patel, P. G., Scott, R. E., Wheeler, M. D., Patel, C., Griffin, K., et al. (2012). Sleep, glucose, and daytime functioning in youth with type 1 diabetes. Sleep, 35, 81-88. • Powers, S. W., Byars, K.C., Mitchell, M. J., Patton, S.R., Standiford, D. A., & Dolan, L. M. (2002). Parent report of mealtime behavior and parenting stress in young children with type 1 diabetes and in healthy control subjects. Diabetes Care, 25, 313-318. • Smaldone, A., & Ritholz, M. D. (2011). Perceptions of parenting children with type 1 diabetes diagnosed in early childhood. Journal of Pediatric Health Care, 25, 87-95. • Stallwood, L. (2005). Influence of caregiver stress and coping on glycemic control of young children with diabetes. Journal of Pediatric Health Care, 19, 293-300. • Streisand, R., Mackey, E. R., & Herge, W. (2010). Associations of parent coping, stress, and well-being in mothers of children with diabetes: examination of data from a national sample. Maternal and Child Health Journal, 14, 612-617. • Streisand, R., & Monaghan, M. (2014). Young children with type 1 diabetes: challenges, research, and future directions. Current Diabetes Reports, 14, 520. • Sullivan‐Bolyai, S., Deatrick, J., Gruppuso, P., Tamborlane, W., & Grey M. (2002). Mothers' experiences raising young children with type 1 diabetes. Journal of Specialized Pediatric Nursing, 7, 93-103. • Sullivan-Bolyai, S., Deatrick, J., Gruppuso, P., Tamborlane, W., & Grey, M. (2003). Constant vigilance: mothers' work parenting young children with type 1 diabetes. Journal of Pediatric Nursing, 18, 21-9. • Sullivan-Bolyai, S. Rosenberg, R., & Bayard, M. (2006). Fathers' reflections on parenting young children with type 1 diabetes. The American Journal of Maternal/Child Nursing, 31(1), 24-31. • Vehik, K., Hamman, R. F., Lezotte, D., Norris, J. M., Klingensmith, G., Bloch, C…Dablea, D. (2007). Increasing incidence of type 1 diabetes in 0- to 17-year-old Colorado youth. Diabetes Care, 30, 503-509 • Wysocki, .T, Huxtable, K., Linscheid, T.R., & Wayne, W. (1989). Adjustment to diabetes mellitus in preschoolers and their mothers. Diabetes Care, 12, 524-529.

15. Judith W. Herrman, PhD, RN, ANEF, FAAN Christopher Moore, BA, LSSGB Brian Rahmer, Ph.D. Mellissa Gordon, Ph.D.Barbara Habermann, PhD, RN, FAAN Video Journaling as a Qualitative Research Methodology

16. Purpose • As part of a larger, mixed methods study this qualitative component evaluates the Wise Guys program using a unique video journaling technique to capture participants’ perspectives on the value of this male-oriented teen pregnancy prevention and health promotion program. Work 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).

17. Why new methods with teens?Issues with…. • Authenticity • Modes of expression • Validity and Reliability • Developmental Appropriateness • Engagement • Technologically Driven Youth

18. Our Previous Evaluation of the Wise Guys Program • Study 1 • N=70 • Assessed Attitudes—Thoughts on Teen Parenting Survey • Pre/Post test design • Some positive changes in attitudes • (Herrman, Moore, & Sims, 2013) • Study 2 • N=159, pre/post test design • Assessed Attitudes—Thoughts on Teen Parenting Survey • Assessed additional attitudes toward sex, relationships, and communication with parents • Assessed Knowledge—general and STIs • Assessed Behaviors • Found positive changes in behaviors and communication with parents • (Herrman, Moore, & Rahmer, 2016)

19. Issues-surveying teens Neutral answers Leave blanks Lack of validity Fidelity to program Large number of unusable data Lack of consents No pre or post test Educator error Non-completion of program Anecdotal successes not captured in evaluation Study Issues

20. Inception of the Video Journaling Project • Little Research on videos • Jewitt, C. (2012). An introduction to using video for research. London, UK: National Centre for Research Methods. • Mixed-methods • Creswell, J.W., Klassen, A.C., Clark, V.L.P., & Smith, K.G. (2010). Best practices for mixed methods research in the health sciences. Washington, DC: Office of Behavioral and Social Sciences Research. • Morgan, D.L. (2014). Integrating qualitative and quantitative methods: A pragmatic approach. Thousand Oaks, CA: Sage.

21. Video Journaling Project Methods • Twenty young men who completed the Wise Guys program- assent and permission • Training on the VJP and given an IPod Touch with video capability • The participants were charged with taking videos of their daily life while considering how Wise Guys and the lessons learned impacted their daily lives through the lenses of directive questions.  This self-reflective exercise was designed to address: • Personal goals and objectives • Recent accomplishments • Obstacles • Social support and environmental factors

22. Video Journaling Project Protocol Use of the IPod-Touch video capacity only for this project Informed consent, confidentiality, and respect of privacy (participants cautioned to take pictures only of self) Aspects of behavior and safe/respectful use of video capacity, reinforced several times. Participants were encouraged to consider their personal values and potential consequences of inappropriate use, in accordance with the principles of Wise Guys.

23. Video Journaling Check ins Every 1-3 days over three weeks Text messages by Research Assistant Questions to guide their videos Encouragement to be creative Reminders to video

24. Analysis Videos were downloaded to a passcode protected drop box.  Videos were merged such that each participant had one video.  Participants were able to keep the IPods. Videos were transcribed and film clips and transcriptions were uploaded into NVivo software, a qualitative data management system. This allowed for side-by-side perspectives to guide the content analysis and assessment for emergent themes. 

25. Video Journaling Project-Results • Communication and Relationship Skills • “Wise Guys showed me to communicate more to my partner…show respect and talk to her about stuff.” • Thoughts on masculinity • “it teaches young men how to be a man and the steps and the process of being one.” • Thoughts on Respect for Women • “A guy should respect women…shouldn’t be hittin’ on a girl…I don’t agree you should pay all the time…half and half…you’d be flat out broke!”

26. Video Journal Project Results (cont.) • Consequences of Unprotected Sex “You could really mess up women….that’s why is it’s important to respect them…be safe…use condoms…make sure they say yes.” • Consequences of Teen Parenting “it taught me to avoid having a baby as a teen—it could mess with my goals.” • Engaging in Safer Sexual Practices “if we want to have sex, we would like to be prepared, how to put on a condom, check the expiration date, put it on right.” • Goal-setting/Impact of Current Behaviors “Showed me what I want to be in life…what I really like and stuff.”

27. Limitations: • Rather than taking videos of current life, young men tended to just sit and talk to videos—Cameo performances • Not as creative as anticipated. • Some young men needed encouragement to express themselves • Others “overexpressed.”

28. Conclusions • Video Journaling provided a medium for accessing rich data from young men.   • This is especially true with regard to the: • Sensitive nature of the data • Active engagement in daily technology and social media • Varying levels of verbal expressiveness of teens.  • Video journaling may be an effective method to provide voice to marginalized populations

29. Examining Survivors of Cancer and Physical Activity in Delaware (ESCAPADE): A Community Based Participatory Research Needs Assessment Michael Mackenzie PhD1, Sean Hebbel MSW2, Ines Crato BS1, Lanie Pires1, Scott Siegel PhD3 1Department of Behavioral Health & Nutrition, University of Delaware 2Cancer Support Community Delaware 3Helen F. Graham Cancer Center & Research Institute

30. Introduction • Delaware seeks to be among states ranked lowest for cancer incidence and mortality, to eliminate cancer health disparities, and ensure quality cancer care for all Delawareans. • Higher physical activity levels associated with better cancer prognosis, reduced mortality, and improved psychosocial and quality of life outcomes. • Despite reported physical activity benefits, majority of cancer survivors do not meet required minimum recommendations. S

31. Research Goal • Develop community-based physical activity needs assessment specific to Delaware cancer survivors and service providers utilizing a community-based participatory research (CBPR) approach. S

32. Specific Aims • Assess collective awareness and knowledge regarding associations between physical activity and cancer • Assess existing physical activity programs and services available to Delaware cancer survivors S

33. Engagement Plan • Generate novel data focusing on physical activity in cancer survivorship while developing community-academic partnerships. S

34. Methods • Using CBPR approach community partners were engaged • Individuals recommended by the community partners were contacted and semi-structured interviews were conducted. • Individuals would then recommend additional individuals to be interviewed. • Individual Interviews (41: 28 service providers, 13 cancer survivors) • Focus groups (2: 6 service providers, 6 cancer survivors) M

35. Methods • Interviews transcribed then coded into separate themes using NVivo software. • Responses and themes initially analyzed by research coordinator and research assistant • Themes then analyzed in collaboration with principle- and community-investigators • Findings then presented to focus groups for verification and expansion of findings M

36. Findings • Five key themes identified: • Cancer Community • Knowledge • Services • Needs & Issues • Action Plan S

37. 1. Cancer Community S

38. 2. Knowledge M

39. 3. Services M

40. 4. Needs and Issues S

41. 5. Action Plan More focus/awareness on existing programs and introducing a new role of a navigator for healthy lifestyle components of cancer survivorship. • Raise awareness of available programs • Possible new role: Health lifestyle specialist-coach with cancer-specific training • Oncologists and other health providers must be on board (screening, referring for physical activity) • Insurance coverage for healthy lifestyle programs S

42. Future Directions • Knowledge of key local factors used to: • Identify physical activity and cancer care priorities in State of Delaware • Guide development of strategies to improve quality of physical activity in cancer care • Communication, coordination, and delivery to cancer survivors and their support networks. • Develop practical recommendations for subsequent action-oriented research • State-wide large-scale physical activity survey • Clinical interventions and health promotion efforts across cancer survivorship continuum M

43. Acknowledgements • The investigative team gratefully acknowledges the support of our respective institutions and the Delaware-CTR ACCEL Community Engaged Research Award 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). SM

44. Assessing the Value of Community Health Workers in Delaware A Community Based Participatory Research Approach Brian Rahmer, PhD, MS; Nora Katurakes, MSN, RN, OCN; Venus Jones; Luisa Ortiz-Aponte, BA; Trincia Griffin; Grecia Caceres

45. Supported in part 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).

46. Healthcare Environment • 30% of traditional Medicare payments to alternative payment models • 85% of traditional Medicare payments to quality or value • Accomplished by end of 2016. • Improve the overall quality of care by making health care more person-centered, reliable, accessible, and safe. • Improve Americans’ health by supporting proven interventions to address behavioral, social, and environmental determinants of health • Reduce the cost of quality health care for individuals, families, employers, government, and communities.

47. Regulatory Environment • CMS rule change allows Medicaid to reimburse for covered preventive services provided by unlicensed practitioners—such as CHWs—as long as a physician or other licensed practitioner recommends the services. • States must amend their state plans in order to take advantage of the rule change, and amendments must include qualifications for non-licensed practitioners. • State SIM funding and DCHI focus on CHW education and training, integration into workforce, coordination • Healthy Neighborhoods and various community health improvement initiatives…

48. Community Environment • Persistent, structurally resistant child & family poverty • Growing inequality, adversity, disembodiment • Rapidly changing epidemiology, slowly adapting systems • Dominance of adult-focused, cost-driven policy, & market driven reforms based on consumerism • Intractable gaps – infant mortality, child morbidity, school readiness, high school graduation, unemployment, etc. • Incremental, ameliorative mindset in face of problems that demand audacious, transformative change

50. What did we do? • Gain important knowledge directly from patients, families and communities, about how they perceive the “value” of Community Health Workers (CHWs) within the context of their own lives. • “Value” may mean different things to different people and we wish to learn more about how patients perceived the value of CHWs.