Transition of Youth to Adult Services: Experiences in Practice

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Transition of Youth to Adult Services
Experiences in Practice

• Lawrence B. Friedman, MD, U of Miami
• Susan Johnson, ARNP, U of South Florida
• Linda Gannaway, MSW, Childrens Medical Services

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Children and Youth with Chronic Illness

• Children/youth with special health care needs are
  those who have or are at increased risk for a
  chronic physical, developmental, behavioral, or
  emotional condition, and who also require health
  and related services of a type or amount beyond
  that required by children generally.
• Maternal an Child Health Care Bureau
• Div. Of Services for Children with Special
  Health Care Needs (June, 1998)

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Children and Youth with Chronic Illness

• 18 of U.S. children lt18 years of age have a
  chronic physical, developmental, behavioral, or
  emotional condition, and require health and
  health-related services of a type or amount
  beyond that required by children generally.
• Newacheck et al. (1998). Pediatrics, 102(1),
  117-123.

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Children and Youth with Chronic Illnesses

• Higher prevalence in older children, males,
  African-Americans, low-income households,
  single-parent households
• 3 times as many bed days school absences
• 11 uninsured
• 6 without usual source of health care
• 13 with one or more unmet health needs during
  previous year
• Newacheck et al. (1998). Pediatrics, 102(1),
  117-123.

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MODELS OF TRANSITION SERVICES

• Generic
• Patient moves from Pediatric (birth to 18 or 21
  or 24 y/o) to Adult (gt18 y/o) provider

• Disease-specific
• Pediatric sub-specialist to adult sub-specialist
  (continuous care across spectrum)
• Previous experience with diseases other than HIV

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MODELS OF TRANSITION SERVICES

• Single Site
• Pediatric to adolescent to adult care within the
  same setting
• Constant clinical services

• Primary Care
• Practitioner is the care coordinator
• Specialist is the consultant

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TRANSITIONING YOUTH INTO ADULT CARESUCCESSFUL
STRATEGIES

• Pediatric provider recommends adult provider
• Pediatric provider offers summary of clinical
  history
• Mentor/support staff assist
• Youth becomes expert in own health care
  condition

• Multiple intervention strategies (support groups,
  mentors, newsletters)
• In-service training for adult healthcare
  providers
• Familiar nurse oversees transition process

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TRANSITIONING YOUTH INTO ADULT CARE

• Principles of Transitioning
• Continual process instead of milestone event
• Begins early in diagnosis and treatment approach
• Reminders to providers to let go
• Youth involved in the decision-making
• Coordination across systems essential

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Success Stories Challenges

• Strengthening program by linking clients to
  potential employment when ready.
• Identify new trends in order to create effective
  future interventions for youth.

• Create client involvement in program development
  through empowerment.
• Changing client attitudes in order for them to
  have more realistic expectations.

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Miami Family Care ProgramHistorical Timeline

• 1981
• First identified HIV-infected child at UM/JMH
• Mortality rate 100
• Positive pregnant women in clinic for pre-natal
  care
• 1983
• First border babies make national headlines
• 1988
• NIHs Pediatric AIDS Clinical Trials Group
  (PACTG)
• Pediatric Demonstration Projects for specialty
  HIV care

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Historical Timeline contd

• 1991
• Ryan White CARE Act Title IV program established
  at UM/JMH
• Pre-natal, gynecologic, screening, developmental,
  and maternal substance abuse programs added
• UMs Division of Adolescent Medicine established
  the Special Adolescent Clinic (SAC) to serve
  behaviorally-acquired HIV-infected youth

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Historical Timeline contd

• 1995
• UM/JMH collaborated with local CBOs and South
  Florida AIDS Network (Title I and II) to add case
  management
• UM Pediatric Mobile Clinic
• Solidified collaboration between Pediatrics,
  Ob/Gyn, Psychiatry, Developmental Services
• NIHs REACH Study implemented (for
  adolescents/young adults)
• 1996
• Comprehensive HIV-screening program for at-risk
  infants
• Title IV continues
• 2001
• NIHs Adolescent Trials Network implemented for
  13-24 y/o clients

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Miami Family Care Programmulti-disciplinary
family centered team

• Physicians
• ARNPs
• Nurse midwife
• Primary care and educator nurses
• Research and adherence nurses
• Psychologists

• Clinical Social Workers
• Case Managers
• Peer Educators
• Outreach Workers
• Parent Educator
• Nutritionist

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FOCUS GROUPS UM Pediatric Youth

• Concept of Transitioning
• Most had never thought about leaving--thought
  theyd just stay indefinitely
• Concerns about Transitioning
• Fear of independence--no parent, social worker,
  nurse, or doctor who is informed and can hold
  hand

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• Transition Concerns (contd)
• Where to go for care?
• New provider wont know medical history
• Youth wont know what questions to ask about
  health care
• Youth wont be able to bond or have comfortable
  relationship with new provider
• Youth wont have a nurse or social worker to help
  with other services, answer questions, or provide
  reminders
• There wont be privacy and confidentiality

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• Transition Concerns (contd)
• Desire to continue with same support group
• Uncertainty about insurance eligibility and rules
• Loss of entitlements
• What to do if getting sick
• Admission to hospital on adult service
• Care at adult offices and ER

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Other Considerations

• Cognitive development
• Physical ability
• Readiness for transitioning (age, maturity,
  pregnancy state, sexual activity, etc.)
• Tracking across systems after leaving
• Educational needs of providers and family
  members/caregivers to adapt to changes

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Other Considerations (contd)

• Perinatal cases vs. behavioral
• Special considerations for foster care teens
• Self-disclosure confidence
• Establishment of case management services
• Continued family-centered support (difficult)
• Advocacy

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Stepping Up A Model for Successful Transition of
HIV Positive Youth to Adult Care

• Ana Garcia, LCSW
• Kenia Sanchez, MSW
• Helen Gutierrez, MSW
• University of Miami School of Medicine
• Department of Pediatrics
• Divisions of Infectious Diseases Immunology
• and Adolescent Medicine

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Phases of Transitioning Youth in the Adolescent
Program
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The Life Skills Educational ProjectUniversity of
Miami

• 10 week program
• Classroom setting
• Didactic (multiple lessons)
• Holistic approach
• Designed for HIV positive, affected, and at-risk
  youth to normalize disease
• Promotes growth, empowerment, and success
• 815 participants

• Educational and fun
• Curriculum developed partly by the youth, based
  on their interests and needs
• Designed to teach concepts in an easy way in a
  safe environment
• Classes change according to youth needs
• Practical lessons as teen survival guide

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TRANSITIONING YOUTH LIFESKILLS EDUCATION PROJECT

• Building Your Interviewing Skills
• Our Money How Can We Make It Last
• Keeping Healthy
• Street Drugs What They Do To Us
• Handling Stress Now That You Are All Grown-up

• Life on own
• Anger management
• Communication style/skills
• Writing skills workshop
• Finishing high school/GED
• Job readiness and occupational exclusions

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Life Skills Participation

• What makes them come?
• Convenient time and day
• Relationship with social worker
• Camaraderie with peers
• May be court ordered
• Possible access to jobs
• Incentives
• Certificate of completion
• Food!
• Fun!!!

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Transition ofBehaviorally-Infected Youth

• Transitioning concept introduced at time of
  enrollment into Special Adolescent Clinic, which
  cares for youth 13-24 y/o
• By age 23, teens assisted with selecting
  appropriate adult health care site
• Social work support continues
• Case management services continued at same Title
  I provider agencies
• Medications continue by ADAP, Title I, or private
  pharmacy

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Transition ofBehaviorally-Infected Youth

• UM/JMH Department of Medicines Adult Special
  Immunology Clinic (and consultant to assist
  transition) and Med/Peds Clinic (transitional
  model for other pediatric chronic illnesses)
• Miami Family Care Programs primary care service
  for women
• Community health clinics
• Private specialty physicians
• Educational and work concerns
• Housing issues

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SELECTED RESOURCES Institute for Child Health
Policy (UF)-- Health Care Transitions www.hctransi
tions.ichp.edu Association of University
Centers on Disability www.aucd.org Parent
Advocacy Coalition for Educational
Rights www.pacer.org Individual chronic disease
organization websites (e.g. diabetes, CF,
arthritis, etc.)
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• The road to success is always under
  construction.
• - Anonymous