EDUCATIONAL MATERIALS Dr. Ashli Owen-Smith PCORI Kickoff Meeting February 18 th and 19 th , 2019
Presentation/Discussion Overview ■ Refresher from yesterday’s meeting re: overall project objectives ■ Interview questions ■ Results from interviews – Will present by stakeholder group 1. Physicians 2. Parents 3. School Counselors – For each group, will cover feedback related to: 1. Format 2. Content 3. Time 4. Dissemination 5. Additional advice – Following each group, will pause for reactions, comments, questions – please make notes as I go about what resonates/seems important, what is counterintuitive/confusing/unclear ■ General discussion about next steps
Overall Project Objectives 1. Conduct in-depth interviews with individuals from each stakeholder group (healthcare providers, parents, school counselors) to understand contextual factors, content-related needs, development and dissemination preferences, etc. 2. Develop educational content 3. Share content with Advisory Group, incorporate feedback 4. Conduct online focus groups with representatives from each stakeholder group to test the module, assess its effectiveness, likelihood of acceptance 5. Disseminate the content via partner organizations (WPATH, MHRN, ASCA)
Interview Questions: What We Asked ■ We are planning on developing educational tools related to identifying and intervening with at-risk TGNC youth and disseminating these tools to healthcare providers, parents and school counselors. As a [healthcare provider/parent/school counselor], – What do you think would be the best format for these tools? (e.g., in-person, print materials, video/DVD, web-based modules, etc.)? – To what extent would you prefer didactic/lecture-oriented versus interactive/discussion-based approaches? – What amount of time do you think you/your colleagues/others in your community would be willing/able to allocate to these tools? – Is there any specific content that you think we should include in these materials? What would make the material most relevant to you/your colleagues/others in your community? – Do you have any suggestions for the best strategies for disseminating these tools, once they are developed, to your colleagues/others in your community?
Physician Feedback: Format ■ For providers – Mixed-method/multifaceted approach – Web-based most effective – In-person most effective (with role-playing) – Videos most effective – Phone/webinar (e.g., lunchtime conference calls with a PPT and Q&A and/or Q&A session with trans kids via video conference) – Avoid meetings – logistically difficult to organize ■ For providers to share with patients – Easily accessible (e.g., printed from website) printed materials/handouts that can be shared with patients
Physician Feedback: Content (1) ■ Clinical – Review articles to make people aware of the literature – Evidence-based treatment guidelines – Referral guidelines – Surgical standard of care – Comorbidities: mental health risks of TGNC adolescents: depression, anxiety, self-harm – Medical treatments: blockers and hormones – Puberty progression of TGNC youth, and when different medications are used – Cost of treatments, how to manage patient for whom meds/surgery too expensive – Data outcomes for people who receive gender-affirming care/the benefits – impact on wellness, survival, mental health, etc.
Physician Feedback: Content (2) ■ Personal/Interpersonal (doctor-patient interactions) – Hearing personal experiences (of TGNC youth, of parents) – Watching a conversation between a trained health professional and a trans youth – How to ask patients questions about gender – What to tell patients about what they should expect with respect to treatment (referrals/experiences with endocrinologist, therapists, etc.) ■ Interpersonal (doctor-family interactions) – How to reach out to unsupportive parents – How to ask culturally-sensitive questions to families of various backgrounds
Physician Feedback: Time ■ Range of feedback! – 1 hour – 2-4 hours – half-day symposium – full-day conference
Physician Feedback: Dissemination ■ Website (for families and providers) ■ AAP conferences with half-day of TGNC healthcare education ■ E-mail list from Georgia AAP pediatricians ■ Connecting with medical education networks (residency programs, medical schools)
Physician Feedback: Additional Advice ■ Offer CMEs; Mandatory, free-training for all staff ■ Have content delivered by experts (e.g., endocrinologist and mental health provider) ■ Clearly brand from a respectable institution (e.g. Emory, GLSEN, HRC, AAP, CHOA, Medical Association of Georgia) ■ Web presence may be necessary but keep in mind strong web resources already exist in this topic
Physician Feedback: Discussion ■ What resonated, made sense? ■ What was counterintuitive, confusing, unclear? ■ What seemed most important? (what are our “takeaways”?)
Parent Feedback: Format ■ Multimodal format ■ Conversation/interactive/experiential and/or in-person most effective ■ Deliver content as part of curriculum in schools ■ Parent meetings at school ■ Webinar imparts the most information but only targets people with interest ■ Printed materials get “thrown in a corner”, not as impactful, but are cheap and easy ■ Videos helpful – Could be used as a didactic method, but must be short; could use “Ted Talk” format – People need to “see themselves” in the video, needs to be personal (tell an engaging story) ■ Web-based resources are great for most people; people need references/links where they can go to get more information ■ Social media platforms for social support, place where people can ask questions to each other ■ Short, sweet, and in “small chunks” of important information - attention-grabbing; bullet points on main issues
Parent Feedback: Content (1) ■ Key terms – What is gender-nonconformity? – What is a gender binary? – What is gender expansiveness? – What is gender dysphoria?4 – What is gender noise? – What pronouns do people go by? Explanation of they/them pronouns ■ Data/statistics – Understanding the health, bullying, and violence statistics ■ Youth experiences – What is the experience of a TGNC child? – What do societal messages teach TGNC youth and how does it affect them?
Parent Feedback: Content (2) ■ Parent experiences – What is the experience of a parent of a TGNC child? – Recognizing that parents are going through loss, and how they can get support – what resources are available? – Even tolerant parents may struggle with gender – How to parent a TGNC child? (how to teach them how to protect themselves and be careful around unsafe settings, does too much freedom / too much restriction look like? How to build resilience?) ■ Identifying/intervening with, helping, treating TGNC youth – How do you identify a child who is in trouble/at-risk? – What resources are available to help TGNC youth and families with (1) keeping youth safe/stop bullying, (2) creating a healthy environment where youth can be themselves? – What is available for medical intervention and what is that pathway?
Parent Feedback: Time ■ Longitudinal education is important – Multiple, in-service school trainings – A series of 1-hour sessions ■ 2 hours is sufficient, especially for a webinar; no longer than 6 hours ■ Some trainings last an entire day
Parent Feedback: Dissemination ■ Use variety of different methods (some people have poor internet access and thus run risk of not reaching these people if only use Internet) ■ Working professionals: e-mail is best ■ Contact organizations to disseminate the resources ■ Google ads / other social media (parents often google about their TGNC kids) ■ Ads that pop up based on search history ■ Word of mouth in the community
Parent Feedback: Additional Advice ■ Employ a facilitator who is comfortable with this topic ■ Include a “test” at the end to keep people engaged ■ Include some kind of credit of value to person or institution to motivate participation; part of requirement?
Parent Feedback: Discussion ■ What resonated, made sense? ■ What was counterintuitive, confusing, unclear? ■ What seemed most important? (what are our “takeaways”?)
Counselor Feedback: Format ■ Mixture of modalities ■ Interactive/discussion-based more effective, engages people ■ Have someone come into the school (in-person) during professional development days – Would be a challenge to know what channels to go through for each school and managing scheduling ■ Print materials not as impactful – get lost, many people don’t read them ■ Handouts – anything you can print to give colleagues and families – Easy ‘parent guide’ with examples – “One pager” with basic educational material ■ Webinars (commonly used for counselors’ professional development activities) with PPTs; other online activities, videos ■ Challenge with parents/backlash
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