Formative Interviews Kevin Steehler PCORI Kickoff Meeting February 18 th , 2019
Presentation/Discussion Overview • Goals / objectives • Interview questions • Results from interviews • Presented by stakeholder groups 1. Physicians 2. School counselors 3. Parents • For each group, will cover feedback related to: 1. Identifying TGNC youth at risk 2. Intervening with TGNC youth at risk 3. Barriers to identifying / intervening, and how do we solve them? - 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
Overall 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 • Identifying TGNC youth at risk • Intervening TGNC youth at risk • Barriers to identifying and intervening • How do we ameliorate these barriers?
Physician Feedback: Identifying (1) • Standardized Clinical Tools • Any TGNC youth could be considered “at - risk” • Standardized questions/screening about gender identity • Standardized questions about family support • Questions about safety in home environment, church, school, etc. • Tools for how to have discussions about gender identity
Physician Feedback: Identifying (2) • Involving Youth in Conversations • Asking youth how they see themselves / their future • How do youth see themselves vs. how do others see them? • General Awareness • Awareness on how many TGNC youth exist
Physician Feedback: Intervening (1) • Medical • Ready access to gender-affirming care is #1 (hormones, blockers) • Direct access to pediatric endocrinology • More physicians/PCPs with training in gender-affirming care • Making the appropriate referrals • Mental Health • Ready access to behavioral/psychiatric/mental health services • Longitudinal follow-up w/ behavioral health
Physician Feedback: Intervening (2) • Advocacy • Advocating for your patient’s gender/pronouns (e.g. calling schools) • Advocating for solutions to fix bullying at school • Advocating for a more supportive home environment • Making TGNC care part of medical school curricula
Physician Feedback: Barriers (1) • Time • Physician availability • Lack of time for training and education • Resources • Lack of access to mental health • Financial resources • Environment • Unsupportive parents
Physician Feedback: Barriers (2) • Systemic Factors • Behavioral health as a “gatekeeper” to hormone therapy • More experienced pediatricians may be resistant to asking additional questions in a patient interview • Minors can’t consent to their own treatment for most things • Cultural Factors • Questions about gender are not normalized in the public • Young people don’t often make appointments
Physician Feedback: Discussion • What resonated, made sense? • What was counterintuitive, confusing, unclear? • What seemed most important?
School Counselor Feedback: Identifying • Fostering Support • Creating a culture of acceptance • Teachers/counselors need opportunities to build trust with students • Open-environment where students can be comfortable saying who they are • More time to interact with students is needed • Professional development • Learn about TGNC youth • Tools for identifying TGNC youth need to be age-dependent • School counselors need to know what resources exist (e.g. GLSEN)
School Counselor Feedback: Intervening • Parental Interventions will Help School Counselors • Educating parents is a major priority • Supporting the Student • Resources for supporting students in need • Try to listen and help TGNC students • Understanding that students may be at different stages in managing dysphoria • Understanding that their parents may not be supportive • Knowing When to Get Help • Making appropriate referrals
School Counselor Feedback: Barriers (1) • Environment • Families / parents not understanding TGNC youth • Lack of parental education • Stigma • Systemic factors • Current system requires students to reach out for support • Students unlikely to do this in an unsupportive environment • Respecting confidentiality while also trying to educate parents
School Counselor Feedback: Barriers (2) • Time • Lack of time for training / education • Lack of time to interact with students • Unaware of resources that exist for: • students • Families • colleagues
School Counsellor Feedback: Discussion • What resonated, made sense? • What was counterintuitive, confusing, unclear? • What seemed most important?
Parent Feedback: Identifying (1) • Any TGNC youth could be considered “at risk” • Fostering Support • Create an environment that allows children to express their identity • Ask abut pronouns / gender • Having a conversation with child about gender • Openly exploring identity without “pigeon - holing” youth • Knowing Where to Find Resources • For parents: who to talk to, where to learn about gender • Identifying when families do not support their child • Identifying struggling / difficulty in school
Parent Feedback: Identifying (2) • Signs of Struggling • Identifying when a child is pulling away from things they enjoy • Identifying when a child is “purging” clothing, toys, and objects that validate their gender identity • Identifying bullying • Identifying when a child is struggling to make friends • Asking youth how others treat them, if they feel comfortable using bathrooms • Identifying signs that a child is transgressing gender and exploring what that means to them
Parent Feedback: Intervening (1) • Resources for families have the most profound impact • Building a community / making connections with other families • Whether this be online or in-person • Teaching youth • Making youth feel that they are normal and supported • Kids need TGNC role models • Conversations about gender need to start at an early age for all children • Helping youth manage what they’re exposed to on social media • Teaching youth resilience in the face of political harms
Parent Feedback: Intervening (2) • Teaching Families • Help families understand gender identity • How to vet therapists / physicians who truly care about TGNC issues • The differences between issues of parenting vs. issues of gender • Interventions should keep siblings in mind • Helping parents advocate for their child • Deconstructing / examining your own gender • Understanding intersectionality and how intersecting identities pose unique situations and risks
Parent Feedback: Barriers (1) • Environment • Unsupportive family • Unsupportive church, school, home, sports team, etc. • Resources & Other Factors • SES, race, location, religion – all of these change the mental health risks • Puberty has a timeline, and this is very stressful to TGNC youth
Parent Feedback: Barriers (2) • Culture • People are unaware of the experiences of TGNC youth • The public doesn’t think about their gender on a day -to-day basis • Families in the community still think of gender as “taboo” • This alienates families from their community and denies them supportive connections • TGNC may be closeted in the face of an unsupportive community • Makes identification more difficult
Parent Feedback: Discussion • What resonated, made sense? • What was counterintuitive, confusing, unclear? • What seemed most important?
General discussion
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