Adolescent HIV Care from the Cradle to the Rave

1
Adolescent HIV Care from the Cradle to the Rave!!

• Rana Chakraborty

2
Objectives
Epidemiology Adolescent development and the
effect of HIV Interventions
3
Key Points

• The epidemic is changing.
• HIV infection is now a chronic disease
• Nearly all HIV-infected children are surviving to
  adolescence.
• Treatment with HAART has had a huge impact but
  new challenges have arisen that need to be
  addressed.
• Interventions include appropriate disclosure and
  communication on adolescent development.
• These include autonomy, body image, peer
  relationships, sexuality, family planning and
  transitioning.

4
Background for CHIPS

• The Collaborative HIV Paediatric Study (CHIPS)
  was established in April 2000 as a multi-centre
  cohort study of HIV infected children in the UK
  and Ireland.
• The collaboration is between
• 46 centres in the UK and Ireland that care for
  HIV-infected children, many of whom are enrolled
  in PENTA trials
• the National Study of HIV in Pregnancy and
  Childhood (NSHPC), and
• the MRC Clinical Trials Unit

5
STARCHIN

• 433 children were last followed up or in shared
  care at centres in the STARCHIN
• Follow-up status
• - 373 children still alive in paediatric
  care
• - 12 left the country
• - 4 lost to follow-up (all before 2005)
• - 17 transferred to adult care (7 since 2005)
• - 27 died
• 7
• 8 in 2000-01,
• 6 in 2002-03,
• 6 since 2004

6
Hospital admission, AIDS mortality rates
7
(No Transcript)
8
CHIPs (UK) Summary

• 1,330 children were reported to CHIPS by the end
  of April 2007.
• Of the 1,330 children reported to CHIPS, 1043
  were alive and in active follow-up at a CHIPS
  centre and 97 were infected by MTCT.
• 63 were being seen at centres in London, 27 in
  the rest of England, 3 in Scotland, 1 in Wales
  and 6 in Ireland.
• At last follow up, 22 remained ART naive, 61
  were on HAART, and 13 were off all ART after
  previously receiving therapy.
• In 1996 the median age of the cohort was 5.1
  years. This increased year on year to 9.9 years
  in 2006. The proportion of the cohort aged 10
  years and over increased from 11 in 1996 to 50
  in 2006. Increasing numbers will be reaching
  adolescence in next 5 years

9
Overview of Adolescence

• Physical, cognitive, and emotional changes
• Developmental tasks
• Defining identity
• Establishing autonomy
• Defining body image
• Exploration of sexuality
• Establishing positive intimate peer relationships
• Mastering abstract thought processes
• Understanding consequences of decisions

10
Challenges

• With chronic illness, transition to young
  adulthood is characterized by psychological
  distress
• Many teens with HIV have to deal with
• Deaths of parent (s), siblings, friends
• Poverty, uncertain immigration status, unwell
  family members, substance abuse, violence,
  trauma, abuse, neglect
• Lack of support from community, teachers,
  schools, society
• Anger/fear/depression about diagnosis

11
Social Support

• HIV-infected children adolescents often have
  delayed grief reactions.
• The greater the social support, the lower the
  parent-reported behavior problems. Social support
  from adults (parents and teachers) was more
  important than that of peers and classmates.
• Social support minimized depression, isolation
  and increased a sense of self-competence.
• Greater disclosure is related to increased social
  support, social self-competence and decreased
  problem behavior.
• Public disclosure (whole world) is associated
  with lower self-competence

12
Autonomy Independence
13
Autonomy Independence

• Privacy becomes increasingly important
• Adolescents want to come to clinic by themselves
  and discuss their care alone.

14
HCW Perspective Autonomy and Independence

• Nurturing versus pampering/enabling.
• Balancing between giving teen autonomy and
  risking his/her getting sick.
• Fearing loss or limitations in control, lack of
  power.
• Using another provider for the sex talk in
  long-term HCW-adolescent relationship.

15
Parental IssuesAutonomy Versus Dependence

• There may be family expectations that the teen
  should be able to take on the skills of young
  adultsto live and manage independently.
• Many perinatally-infected youth do not have the
  skills to become autonomous
• Many have not had role models for adulthood
• Providers did not expect them to survive
  childhood
• Adherence barriers unique to youth
• Complex scheduling school, social, work,
  inconsistent eating and sleeping schedules.
• Withdrawal of parental involvement from
  medication taking.
• Conflicts related to development of identify,
  stigma, body image, peer relationships.
  Medications are reminders about HIV.

16
Interventions Autonomy Versus Dependence

• Help developing life skills
• Daily living and basic needs
• School and work
• Self-care skills
• Healthy living and managing HIV
• Medication Management and Adherence
• Counseling parents about power struggles and the
  need for autonomy.
• HCWs need to assess their own boundaries
  -stopping medication, changing providers.
• The teen may not be able to hear non-judgmental
  sex information when theyve been in such a long
  term relationship with the HCW the provider
  should consider sending the adolescent to another
  provider.

17
Interventions Managing Their Own Care - Autonomy

• Adolescents with HIV are not a homogeneous group
• How developmentally mature is the teen?
• How ready is he/she to take over care?
• The barriers to adolescent adherence are unique
• Understanding the developmental tasks of
  adolescence is central to designing an effective
  medication adherence plan

18
Interventions The role of the HCW

• Involve teen in discussing medications and
  treatment.
• Consider short vs. long-term care plan.
• Evaluate behavioral and environmental factors
  influencing adherence.
• Assess for psychiatric disorders including ADHD,
  Autism, Aspergers and Anorexia.

19
Interventions The role of the HCW

• Many perinatally-infected adolescents were model
  patients when they were younger and become
  non-adherent to care and medications when they
  reach adolescence
• Assess the teens health belief model. Where is
  the teen regarding medications and treatment?
• Perceived vulnerability
• Perceived effectiveness, ease, and desirability
  of treatment
• Address the other issues that are going on in the
  teens life
• Regimen complexity, teens lifestyle
• Support from family and others
• For the adolescent with depression or anxiety,
  treatment of mental illness can enhance adherence
  to antiretroviral medicine.
• Support tools (pill boxes, texts, support groups)
  that can assist the teen with adherence to care
  and medications.

20
Body Image
21
Body Image

• Adolescence is a time to define oneself body
  image is in the forefront.
• Approaching puberty most adolescents become
  preoccupied with their bodies.
• Teens compare their bodies to those of their
  peers of the same sex. They have an intense need
  to fit in
• Teens have concerns about being sexually
  attractive themselves

22
HIV and Body Image
23
HIV and Body Image Teen Perspective

• A distorted body image is common due to these
  multiple causes
• Growth Pubertal Delays - Teens living with HIV
  are often shorter than their peers.
• Lipodystrophy loss of the thin layer of fat
  under the skin, making veins seem to protrude
  wasting of the face and limbs and the
  accumulation of fat on the abdomen or breasts.
• Wasting involuntary weight loss of 10 baseline
  body weight plus either chronic diarrhoea or
  chronic weakness and documented fever in the
  absence of a concurrent illness or condition
  other than HIV infection.
• Obesity HIV-infected teens may have been
  encouraged to overeat in their early years (to
  compensate for their chronic infection) leading
  to obesity.
• Skin conditions Teens are at risk for skin
  disorders, eg, molluscum contagiosum, fungal
  infections, herpes simplex virus lesions, herpes
  zoster (shingles), pruritic dermatoses etc.
• Medical appliances For nutritional support or
  ease of medication administration, teens may have
  a gastrostomy tube or central lines these may
  be opposed by the teen because of the appearance.

24
HIV and Body Image HCW Perspective

• Focus is on teens medical needs
• Disease progression may warrant extreme measures
  e.g. central line
• Treatment plans have historically been developed
  with childs caregiver. As a child ages into the
  teen years, s/he may be able to participate more
  in such a plan.

25
Interventions Strategies Body Image

• Address growth or pubertal delays e.g., growth
  hormone.
• Consider a proposed treatments effect on body
  image, lifestyle, activities, thinking.
• Involve teen in decisions - s/he will be more
  likely to adhere to the plan.

26
Peer Relationships
27
Peer Relationships

• The focus of adolescent relationships shifts from
  family to peers, and the peer group sets behavior
  standards.
• If friends are doing itthey want to do it too
• Invincibility and risk-taking, joining gangs
• Skin carving, tattoos, body piercing
• Sexual experimentation
• Drugs and alcohol
• HIV may or may not alter risk-taking behavior.
• The perinatally-infected teen may be emotionally
  immature and have difficulty relating to peers.

28
Disclosure to Friends. Schooling. Peer
Relationships

• Fearing rejection, disclosure to peers is rare
  only to a best friend after testing
  relationship, e.g., How do you feel about people
  with AIDS?
• Some caregivers dont want their children to go
  to school. Many families have not pushed them
  academically because they were not expected to
  live.
• Unstable living environments due to dispersal
  often lead to the frequent changes in schools
• Some teens have had few role models for positive
  health behaviors academic achievement.
• Absenteeism may be due to medical illness.
  Because of confidentiality and non-disclosure of
  the childs/family diagnosis, HCWs need to be
  proactive regarding school experience and support
  outside of the school for the child/family
• High rates of ADHD Autism have been reported in
  children with HIV infection.
• Support from friends parents is important to
  psychological well-being. Social problem
  behaviour associated with decreased parental,
  peer teacher support.
• Disclosure to the school is often avoided.

29
Supporting Healthy Peer Relationships

• Convene peer support groups Body and Soul. It
  is important for teens to interact with other
  HIV-infected teens. Many teens do not want to
  come to HIV support group but will participate
  in peer social activities.
• It is helpful to problem-solve and role play with
  teens concerning disclosure.
• Accept who teen brings to medical visits
• Be proactive with guidance on disclosure
• Educate candidly about risks
• Assist caregivers to find resources to support
  teens health and development

30
Sexuality
31
Developmental tasks of early and late adolescence
that relate to sexuality

• -Physical maturation
• Cognitive emotional development
• Social development (peer group sexual
  relationships)
• Autonomy from parents
• Forming ones gender (and sexual) identity
• Internalizing ones sense of morality

32
Sexuality

• Accepting one's physique.
• Beginning to define self as a sexual being.
• Forming new, more mature relations
• Achieving masculine or feminine social role
• Preparing for commitment and family life

33
Effect of HIV on Sexuality in the Perinatally
Infected Teen

• Impaired body imagelower self esteem
• Delayed puberty
• Threatened sexual intimacy
• Transmission issues
• Disclosure issues

34
Teen PerspectiveSexuality

• Anxiety regarding
• Sexuality
• Sexual relationships
• Reproductive and sexual functions
• I have the same doctor since I was a baby hes
  like my parent. I cant talk to him about sex. I
  dont want to disappoint him.

35
HCW ResponsibilityGuidance

• Discuss sexual anatomy and function.
• Discuss and provide or refer for contraception.
• Teach facts about transmission safe and
  responsible sex.
• Many perinatally-infected teens enter adolescence
  not realizing HIV is an STD.
• Sexual identity. Perinatally infected teens may
  be gay or bisexual.

36
Planning for the Future

• Planning for the future is one of the primary
  tasks of adolescence.
• Planning for the future is harder for perinatally
  HIV-infected teens
• They were not expected to survive into adulthood
• Their future remains uncertain
• Many experience depression, loss, hopelessness
  and despair
• Think about the future 5 years at a time
• Career Planning Support
• To develop skills for job and independence
• Keystay well to be part of the future
• The focus should be on hope The question is not
  how long they will live, but what kind of lives
  they will have.

37
InterventionsSchool to Work

• Start earlybuild expectations
• Identify passion and skills for future job
• Encourage education as much as possible
• Offer career planning assistance
• Find mentors
• Teach or refer for life skills
• Assist teen in taking care of their own
  entitlements

38
Reproductive Health/Family Planning
39
Reproductive Health/Family Planning

• Many adolescents, HIV-infected or uninfected,
  want to have children
• Can be a strong desire they have personal sense
  of mortality
• I want to leave some part of me on the earth
• Assure teens that they can have children safely
  when the time is right

40
Transitioning
Planned movement of adolescents with chronic
illness/disability from child-centered to adult
oriented systems-health, employment, independent
living. The goal of transition is for
adolescents to move towards autonomy with a
provider who can foster opportunities in health,
education, recreation and employment
41
Principles of Healthcare Transition

• Begin healthcare transition early
• Continuity of care is the goal
• Transition planning should be comprehensive
• Providers and parents should be prepared to
  facilitate movement
• Service coordination, communication and
  collaboration between HCWs is essential
• Anticipate change and develop a plan for the
  future.
• The teen should become a responsible member of
  the treatment team as early as possible.
• Celebrate transitionsGCSEs, A levels
  certificates of completion
• Practice family-centered care
• Encourage meetings with adult practitioners prior
  to transitionSGH Adolescent clinic.

42
Principles of Healthcare Transition

• Adolescents should
• Ask questions about their health and understand
  their condition.
• Recognize warning signs that could indicate an
  emergency and who to call.
• Learn how to make their own appointments
• Know how to call the pharmacy and obtain repeat
  prescriptions
• Ask the practitioner to explain all tests and
  results
• Know the names of all medications they are
  taking, the reasons, dosages, when to take them
• Begin discussing resources that could be helpful
  once the transition has occurred
• Take on the role as mentor to those who have not
  transitioned and become a resource to help
  others over the bridge

43
(No Transcript)