Health Care Transition for HIVPositive Adolescents and Young Adults

1
Health Care Transition for HIV-Positive
Adolescentsand Young Adults

• Robert M. Lawrence, MD
• AETC Faculty
• University of Florida
• Gainesville

2
Disclosure of Financial Relationships

• This speaker has no significant financial
  relationships with commercial entities
• to disclose.

This slide set has been peer-reviewed to ensure
that there are no conflicts of interest
represented in the presentation.
3
(No Transcript)
4
Learning Objectives for Health Care Transition
Talk

• Be able to identify issues and barriers facing
  adolescents and their families, for successful
  transition
• Be able to develop individualized transition
  plans
• Be aware of available resources for HIV-positive
  adolescents and the process of transitioning to
  adulthood and adult medical care

5
Defining Transition

• It is a process of adjustment, as part of normal,
  healthy development, which is meant to meet
  individual needs as one proceeds from childhood
  to adulthood.
• The goals of transition are to maximize life-long
  functioning and increase /maintain independent
  behavior.

AAP, AAFP, ACP-ASIM -- 2002 Consensus
Statement on Health Care Transition
6
Defining Health Care Transitions (HCTs)

• These are the changes that reformulate the
  clinical medical care to fit with a young
  persons increasing maturity and independence.
• The changes often include a transfer of care from
  pediatric-oriented medicine to adult-oriented
  medicine.
• The goals of HCTs being to provide continuous,
  developmentally appropriate health care for youth
  as they move from childhood to adulthood.

AAP, AAFP, ACP-ASIM -- 2002 Consensus
Statement on Health Care Transition
7
Issues of HIV PositiveAdolescents and Young
Adults

• Disclosure
• HIV knowledge
• Identity
• Self respect
• Physical growth
• Sexual development
• Emotional competence
• Responsibility

• Negotiation skills
• Decision making
• Health choices participation
• Exploration / Experimentation
• Sexuality
• Pregnancy
• Transition to adulthood

8
Sexuality and HIV Positive Youth

• HIV knowledge
• Identity
• Sexual development
• Emotional competence
• Cognitive development
• Sexual awareness
• Sexual knowledge prevention of pregnancy and
  STIs
• Familial and personal morals and values
• Negotiation skills
• Decision making
• Peer relationships and intimate relationships
• Partner notification the law and practice

9
Skills of Emotional Competence

• Awareness of ones emotional state conscious and
  unconscious
• Skills in discerning others emotions
• Skill in using the vocabulary of emotion
  subculture level and social
• Capacity for empathic and sympathetic connection
  with anothers emotional experience
• Recognizing the inner emotional state versus the
  outer expression of emotion
• Ability to adapt and cope with aversive or
  distressing emotions
• Capacity to share genuine emotions mature
  intimacy
• Capacity for emotional self-efficacy acceptance
  and modification of ones emotions

Saarni, C. Emotional Competence, 2000
10
Key Milestones of Adolescent Development

• Growth variable timing, gender differences
• Cognition abstract thought, decision making
• Sexuality exploration, in love, intimacy
• Identity body image, sexual identity, personal
  ID
• Psychological health emotions, introspection,
  competence and consolidation of
  self
• Peer relationships friendships, peer
  acceptance, connection with individuals,
  intimacy
• Relationship with parents boundaries, conflict
  over independence, detachment,
  separation

www.centerforhealthtraining.org
11
(No Transcript)
12
Effects of Chronic Illness or Disability on
Adolescent Development

• Biological
• Delayed/impaired puberty
• Short stature
• Reduced bone mass
• Psychological
• Infantilization
• Adoption of sick role as identifier
• Persisting egocentricity
• Impaired development of sexual-self
• Altered cognitive functioning

• Social
• Diminished independence
• Social isolation
• Failed peer relationships
• Educational failure
• Vocational failure
• Failed development of
• independent living ability

Suris et al. Arch Dis Child 2000
13
Effects of Developmental Issues on Chronic
Illness or Disability

• Biological
• increased caloric requirement can have a negative
  impact on illness
• pubertal hormones affect metabolism and illness
  (Growth Hormone)
• Psychological
• poorly developed abstract thinking affecting
  adherence
• bullet proof as a self concept
• experimentation (risk) behaviors
• rejection of health professionals as part of
  separation from parents
• Social
• chaotic eating habits affects medications
• smoking, alcohol, drug use affects health
• risk taking realization of short life

Suris et al. Arch Dis Child 2000
14
Potential Personal Barriers to Medical Care
Transition

• Delays in development cognitive, physical,
  psychological, emotional, social
• Physical illness
• Mental illness
• Loss family members, family
• Disclosure patient, family and beyond
• Risk Taking short life, bullet proof
• Dependence Independence
• Failure Success
• Health Status encompasses many of these

15
Health Status of Young Adultsin the United States

• Disabilities in 18-24 year olds physical,
  mental or emotional limitation affecting daily
  functioning Rare 4.6 http//www.cdc.gov/nchs/nh
  is.htm
• Mortality
• Unintentional Injury
• Violence
• Substance Abuse
• Mental Health
• Reproductive Health
• Chronic Disease

M. Jane Park et al. J Adol Health, 2006
16
Health Status of Young Adultsin the United States
http//www.cdc.gov/nicpc/wisqars/ M. Jane Park et
al. J Adol Health, 2006
17
Health Status of Young Adultsin the United States
M. Jane Park et al. J Adol Health, 2006
18
Health Status of Young Adultsin the United States
M. Jane Park et al. J Adol Health, 2006
19
Health Status of Young Adultsin the United States
M. Jane Park et al. J Adol Health, 2006
20
Uninsured Young AdultsUnited States 2002-2003
Private run from CDC.gov/nchs/nhis.htm M. Jane
Park et al. J Adol Health, 2006
21
Potential Situational Barriersto Medical Care
Transition

• Lack of support / role models
• Isolation disclosure issues, co-morbidities
• Poverty
• Lack of knowledge about health care system,
  community resources, available insurance coverage
• Co-morbidities mental health issues or
  substance abuse in the family
• Health care access family has difficulty
  managing the health care system

22
Potential System Barriersto Medical Care
Transition

• Health care system policies, practice
  differences and limitations, lack of
  communication between pediatric and adult health
  care teams
• Insurance changes at 18 years of age for
  Medicaid and SSI, changes at 21 for CMS
• Outpatient versus Inpatient Services coverage
  and age limits
• Differences in Pediatric and Adult-oriented Care

23
(No Transcript)
24
Creating the Processfor Successful Transition

• Dont reinvent the wheel access resources,
  consult other programs
• Assess the strengths and potential barriers
  within your health care system
• Create a map and plan for transition in the
  future
• Explain the process to the family and adolescent
• Start early, supporting and fostering normal
  development and then independence in the
  adolescent
• Involve the parents and family from beginning to
  the transition

25
Health Team Development

• Knowledge about adolescent health issues
• Communication skills effective with youth
• Assessment skills for adolescent development
• Knowledge about sexuality and reproductive health
• Assessing youth risk behavior
• Emphasizing youth strength and competence
• Creating special programs for youth
• Utilizing transition tools CMS workbooks,
• USFs Individualized Transition plans, skill
  sheets

26
Creating the Individualized Transition Plan (ITP)

• Introduce the concepts to the patient and family
  development, independence, health, transition
• Assess the adolescent family early (Age 12
  14)
• Engage the family from the beginning parallel
  support and
• development for achieving the youths and the
  familys goals
• Clarify goals
• Make the process transparent
• Acknowledge and utilize the youths strengths
• Reassess the needs, progress, barriers, goals and
  plan
• (Ages 15-17 and 18-21)

27
Skills and Abilities Developing During Transition

• Health knowledge and management
• Participation in
• preventive health behaviors
• demonstrates responsible sexual activity
• aware of insurance and community resources
• Pursues educational, vocational, and career goals
• Utilizes family support
• Demonstrates appropriate social interactions
• Progress towards independent living

28
CMS Health Care Transition Workbooks

• Basic Health Knowledge
• Health Care Practices
• Medications, medical tests, equipment and
  supplies
• Doctor Visits
• Health Care Transition
• Transition to Adulthood
• Health Care Systems
• Life Skills having goals and a plan to achieve
  education and employment, living arrangements,
  independent living

29
(No Transcript)
30
Life Skills Educational ProjectUniversity of
MiamiA. Garcia, K. Sanchez, H. Gutierrez

• 10 week program
• Classroom setting
• 8-15 participants
• Multiple lessons
• Holistic approach
• Designed for HIV , affected, or at-risk Youth
• Promotes growth, empowerment and success

• Educational and Fun
• Youth contributed to the curriculum
• Teach concepts
• Safe environment
• Classes change according to the needs of the
  youth
• Teen Survival Guide

Stepping Up Model Garcia, Sanchez , Gutierrez
31
Life Skills Educational ProjectUniversity of
MiamiA. Garcia, K. Sanchez, H. Gutierrez

• Life on own
• Anger management
• Communication style/skills
• Writing Skills Workshop
• Finishing high school / GED
• Job Readiness and occupational exclusions

• 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

32
Strength-Based Approach

• HEEADSSS Assessment
• Home
• Education / Employment
• Eating
• Activities
• Drugs
• Sexuality
• Suicide / Depression
• Safety

• Strength Indicators
• Belonging, Generosity
• Independence, Mastery
• Independence, Mastery
• Generosity, Belonging
• Independence
• Independence, Mastery
• Belonging, Mastery, Independence
• Decision-making

AAP Bright Futures Adol Health Care 101
Goldenring J, R. Contemp. Peds, 2004
33
Strength-Based Approach Assets

• Good grades in school
• Parents talk about school
• Involved in youth programs
• Volunteering
• Help decide what goes on in school
• Feel valued by community

34
Strength-Based Approach Assets
Murphy, D. et al. J Adol Health, 2004
35
Relationship Between Assets and Risk Behaviors
Murphy, D. et al. J Adol Health, 2004
36
Relationship Between Assets and Healthy Behaviors
Murphy, D. et al. J Adol Health, 2004
37
Strength-Based Approach

• Pittman K, et al. 2003 Preventing Problems,
  Promoting Development, Encouraging Engagement
  Competing Priorities or Inseparable Goals?
  http//www.forumfyi.org/Files/PPE.pdf
• Murphey D et al. 2004 Relationships of a Brief
  measure of Youth Assets to health-promoting and
  Risk Behaviors. J Adol Health 34184-191.
• Goldenring J, Rosen D. 2004 Getting in adolescent
  heads An Essential update. Contemporary
  Pediatrics 21 64.
• Benson PL et al. 1999 A Fragile Foundation The
  State of Developmental Assets Among American
  Youth. Search Institute Minneapolis, MN.

38
(No Transcript)
39
Successful Transition Programs within Florida

• Stepping Up A Model for Successful Transition
  of HIV Positive Youth to Adult Care U. of Miami,
  Division of Infect. Disease, Immunology and
  Adolescent Medicine
• Transitioning Through Adolescence
• U. of Miami, Pediatric Immunology
• Transitioning to Adult Care
• USF Pediatric/Adolescent HIV Program

40
Resources for Transition

• Stepping Up A Model for Successful Transition of
  HIV Positive Youth to Adult Care. - Ana Garcia
  LCSW, U of Miami
• Transitioning to Adult Care S. Johnson ARNP
  http//usfpeds.hsc.usf.edu/adolescent
• Transitioning Through Adolescence- A. Vega ARNP,
  U of Miami- C. Fulton ARNP, U of Florida,
  Jacksonville
• Childrens Medical Services DOH, Florida Youth
  Transitions
• http//cms-kids.com/

41
Resources For Transition

• AMA Department of Adolescent Health Guidelines
  for Adolescent Preventive Services Clinical
  Evaluation and Management Handbook
• Green M, Palfrey JS, eds. 2000, 2nd ed. Bright
  Futures Guidelines for Health Supervision of
  Infants, Children and Adolescents
• CDCP, Nat Inst on Disability and Rehab
  Research Healthy People 2010 http//www.cdc.gov/nc
  bddd/dh/schp.htm
• Institute for Child Health Policy 352-265-7220
  www.hctransitions.ichp.edu