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Engaging and Retaining Youth in Care -Horizons ProjectPresenter Nikki Cockern, PhD, Psychologist Horizons Project Children’s Hospital of Michigan/Wayne State University Detroit, MI [email protected] http://www.peds.med.wayne.edu/horizons **Funded by HRSA, MDCH, City of Detroit and United Way** Horizons Project Horizons Project Dedicated to providing HIV prevention services to at-risk youth and direct care services to adolescents and young adults living with HIV (ages 13-24) Has continued to grow as the only comprehensive HIV/AIDS program in Michigan focusing on youth Wayne State University School of Medicine (WSU) and the Detroit Medical Center (DMC) serve as fiduciaries. 2 Adolescent Development Adolescence is the developmental period in animals (not just humans) during which the body and brain emerge from an immature state to adulthood (spear, 2000; Steinberg & Morris, 2001). This period is gradual and we don’t know the exact moment this happens Puberty=sexual maturation occurs during this time This period of transition is marked by pronounced changes in cognition, behavior, and temperament (Kelley, Schochet, & Landry, 2004). Risk taking increases here & is associated with brain changes rather than puberty Overall Adolescent Issues Trust Often not ready to change, not motivated (intrinsically) Lack of impulse control Rebel against prescriptive approaches – educational, skills building, traditional counseling Developmental tasks & milestones for Adolescents Cognitive ability Formal operations Complexity – consider many elements Imagine abstract possibilities More emphasis on social and emotional consequences Less emphasis on physical, goal oriented or risk amplifying Problem solving – limited ability to generate practical options Challenges with perspective taking Identity Formation What’s Unique About Adolescents? Environment is vital Separation/individuation Identity formation as separate from authority figures Translating personal goals into behavior within a constrained environment Communication skills are still developing Our Experience With Adolescents Both Care and Prevention High frequency of literacy issues Prolonged academic difficulties Frequent acquisition of STI’s Use of marijuana and alcohol Huge trust issues Low priority of knowing HIV status despite high risk (prevention) Hard to prioritize care (HIV+) Limited support systems Minimal supervision Mental health issues (i.e. depression, anxiety, conduct disorder) Do You Know What These Mean? Acronym 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. 18. 19. 20. 21. 22. 23. 24. 25. 26. ASL (R P) BF / GF BRB CD9 Code 9 GNOC GTG IDK (L)MIRL LOL MorF MOS NIFOC Noob NMU P911 PAW PIR POS PRON PRW S2R TDTM Warez W/E WTF LMAO Definition ____________________________________ ____________________________________ ____________________________________ ____________________________________ ____________________________________ ____________________________________ ____________________________________ ____________________________________ ____________________________________ ____________________________________ ____________________________________ ____________________________________ ____________________________________ ____________________________________ ____________________________________ ____________________________________ ____________________________________ ____________________________________ ____________________________________ ____________________________________ ____________________________________ ___________________________________ ____________________________________ ____________________________________ ____________________________________ ____________________________________ Horizons Project’s Comprehensive Continuum of Care Other Medical Sites Serving HIV+ Youth Horizons Group Prevention HIV+ Horizons Community Outreach Horizons Peer Advocacy C&T Sites HIV+ Horizons Field & Internet Outreach Horizons C&T and MI Horizons Case Finding: Agency/Field Outreach Horizons Group Prevention Horizons Clinical Care Team Primary Medical Care Medical Specialty Care Nursing Services Health Education Adherence Support Social Work Services Case Management Ongoing Advocacy Mentoring Consumer Involvement Therapeutic Activities Transportation Psychological Services Psychiatric Consultation Education and Training MI for Retention Prevention Services (MI and Group) Community Agencies and Resources 9 Horizons Project Demographics Clinical Care 2009 194 youth medically (143 males, 51 females);48 new and 93% African-American 101 youth identified as MSM (71%) 2010 147 youth medically (100 males, 43 females, 4 transgender); 22 newly diagnosed 91%YMSM Prevention & Outreach 2009 365 youth received HIV C&T (90% MSM; 96% AA) 2010 94 youth received HIV C&T (93% MSM; 98% AA) 10 Approach to Clinical Care “One stop shopping” approach Primary Medical Care (access to Clinical Trials) Treatment Adherence Advocacy and Risk Reduction Health Education Services Nursing Services Case Management Social Work Services Mental Health Services including psychiatric consult Support Groups Transportation 11 Approach to Clinical Care Multi-disciplinary Team Physician Nurse Practitioner Clinical Psychologist Psychiatric Nurse Practitioner Social Worker Case Manager/Care Coordinator Peer Advocate Health Systems Navigator 12 Ancillary Services Community site for delivery of psychosocial services Individual Counseling/Therapy Case Management Social Work Treatment Adherence Program Transportation Transportation, health education, treatment adherence, mentoring, support groups (Jam sessions) and therapeutic activities Advocacy Advocates assist youth in enrolling and remaining in care Consumer Involvement Motivational Interviewing is offered program-wide 13 Transportation Transportation: Bus tickets Vans Cabs Available for clinical and ancillary appointments Some changes have been made due to rising fuel costs and funding cuts Accessed through some insurance plans Also available for Jam Sessions and support groups Treatment Adherence Program The program focuses on: Adherence to medical appointments Adherence to medication regimens Risk behaviors HIV knowledge and education Youth with adherence concerns: Are discussed at MDT Treatment plans are modified as necessary Treatment Adherence Program Incentives are provided for: Attending appointments Improvement in lab values Reducing risk behaviors Increased scores on HIV knowledge tests Incentives include: Gift cards, access to special events, prizes, conference opportunities, etc. Lost to Follow-Up (L2FU) Program L2FU Definition: Youth who have not attended a clinic appointment within 90 days Process: Phone Calls Post Cards Home Visits Social media: texting and Facebook Motivational Interviewing integrated into calls, home visits, and clinical appointments Youth not retained in care are discussed at L2FU MDT L2FU Program Protocol 5. Contact made, clinic visit scheduled OR Repeat 1. “No show” to visit, call (p/c) to reschedule 2. Month after missed visit, advocate continues p/c 4. rd 3 month Home Visit 3. month Mail post card 2nd Program Summary One stop shopping, multi-disciplinary team approach to care Clinical Services Psychosocial Services Retention Strategies include: Peer Advocacy Transportation Treatment Adherence Program L2FU Program Characteristics of youth who are Inconsistently Engaged in Care Often newly diagnosed Young (chronologically and/or emotionally) Higher VL, lower CD4s Often not feeling badly (non symptomatic) Additional adherence issues Not on meds, but may need to be soon Avoidance and issue with status This includes issues related to disclosure, shame, etc. Factors Affecting Attendance and Engagement Key reasons: Low or inadequate social support Competing priorities Often in “survival mode” Limited problem solving and/or communication skills Chaotic environment Retention Measure HIVQUAL retention measure 2008 = 95% 7/1/08-6/30/09 = 98% or 2-3 patients 7/1/09-6/30/10 = 94% or 10 patients 7/1/10-11/30/10 = 95% or 7 patients Difficulty quantifying no show rate due to multiple appointments Issues in Retaining Youth Multiple interventions to maintain contact Circumstances can change daily Health is not a priority Developmental concerns Enormously challenging to get them to show 2/year L2FU Program Protocol 5. Contact made, clinic visit scheduled OR Repeat 1. “No show” to visit, call text, Facebook email to reschedule 4. month Home Visit 3rd 3. 2nd month Mail post card 2. Month after missed visit, advocate Continues phone, text, Facebook, email What We’ve Learned Youth contacted prior to appointment and confirmed, during missed appointments and as soon as possible after missing appointments are more likely to reschedule and attend next appointment. Youth Tracking Log List of youth who miss at least one appointment. Taken off list if next appointment kept. Updated and reviewed at Weekly clinical team meeting and Monthly for in depth discussion during clinical team meeting Learning from Past QI Project Of 68 youth (Jan-Aug 09) listed as missed appointments, 38 or 56% returned to care, Home visits did not yield significant return to care (4 out of 11 or 36% returned) 36 returned (89% of the 38) Phone calls (if timely and frequently) Added texting, email, and Facebook 21 still being pursed Effectiveness of Social Media Texting (approx 30-40%) Facebook (approx 30%) Email (approx 2%) Shifting Responsibility to Youth Use of motivational interviewing to decrease number of youth who miss appointments Discuss barriers Problem solve ways to address barriers Increase motivation to take care of their health and to keep appointments PDSA 2: October 09 – October 2010 Total number of youth: 160 80 Youth on Tracking List since Oct 1st (or 52% of youth miss at least one appointment during 10 month period) Motivational Interviewing (MI) Improvement Process-Missed Appointment Process Youth who have missed a scheduled medical clinic appointment, without contacting team and scheduling another within 30 days. List Prioritization 1. Clients who missed their clinic appointment within the first month (21-30) days and have not rescheduled 2. Clients who have not attended a clinic appointment in 2-6 months 3. Clients who have not attended a clinic appointment in 6-12 months MI @ point of contact & @ clinic appt. 1. Maintain List Identify youth who missed clinic appt. & not able to reschedule 5. Contact made w/ Client & clinic visit scheduled Or Repeat MI via phone MI @ HV if contact made 2. month after missed clinic visit. Advocate attempts Contact via phone/text 1st 4. month Home Visit 3rd 3. 2nd month Mail post Card sent Reduce Number on List and Repeaters on List 80 = Total number of youth on tracking list since October 51 Motivational Interviewing 92% or 47 kept appointments and are not on current list Of 29 who didn’t get MI ER (3), moved/removed from list (2), care elsewhere (7), incarcerated (2), not ready to come in (1), located and pending appointments (8) in 1-2 weeks, can’t find (7 - no information (MIA)) Current L2FU List Total number: 20 4 on current list had MI (2 seen at recreational activity and have appointments, 2 by phone and have appointments) 8 pending appointments 7 can’t find 1 not ready to come in Summation: To retain Youth Maintain Youth Tracking Log Contact youth to confirm before appointments, if missed then during appointments or as soon as possible after missed appointment Continue use of Social media: texting and facebook Motivational Interviewing integrated into calls, home visits, and clinical appointments Challenges when working with youth Engagement Adherence Drug and alcohol use Media Peers Confidentiality Shift How We Do Business Starts with a paradigm shift Examine how we (providers) think about the teens we serve What type of language do we use (assets vs. risk) Move from (implied) superiority Develop cultural competence Empowerment: Give youth an opportunity to be the “expert”; demonstrate mutual respect & partnership Address stigma, assumptions, judgmental behavior within the care delivery system Provide integrated peer driven medical and psychological support models Address the ‘real affects’ of denial and depression while increasing hopefulness and opportunities for success Staff Acknowledgement Director of Medical Service and Research: Elizabeth Secord, MD Consultant for Psychological Services and Research: Sylvie NaarKing, PhD Director of Prevention Services: Angulique Outlaw, PhD Manager of Clinical & Prevention Services: Monique Green Jones, MPH Clinical Manager: Nikki Cockern, PhD Clinical Nurse Practitioner: Debbie Richmond, NP Clinical Social Worker: Joyce Alexander, LMSW Care Coordinator: Linda Hyter Peer Advocates: Terry Pross, Amanda Waterman Adolescent Consultant: Jessica Daniel, MPH Outreach and Prevention Coordinator: Dwain Bridges Outreach workers: Raynard Campbell/Terrance Terry Adolescent HIV Resources www.peds.med.wayne.edu/horizons http://www.mihivnews.com/stats.htm http://www.chagdetroit.org/UFM.html www.cdc.gov/hiv www.kff.org Thank you!—Questions/Comments? Nikki Cockern, PhD; 313.745.4892; [email protected] Monique Green-Jones, MPH; 313.966.9763 [email protected] http://www.peds.med.wayne.edu/horizons