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Adolescent HIV Care from the Cradle to the Rave


Skin carving, tattoos, body piercing. Sexual experimentation. Drugs ... Achieving masculine or feminine social role. Preparing for commitment and family life ... – PowerPoint PPT presentation

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Title: Adolescent HIV Care from the Cradle to the Rave

Adolescent HIV Care from the Cradle to the Rave!!
  • Rana Chakraborty

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

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

  • 433 children were last followed up or in shared
    care at centres in the STARCHIN
  • Follow-up status
  • - 373 children still alive in paediatric
  • - 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

Hospital admission, AIDS mortality rates
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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

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

  • With chronic illness, transition to young
    adulthood is characterized by psychological
  • 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

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

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

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
  • Using another provider for the sex talk in
    long-term HCW-adolescent relationship.

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
  • 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.

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

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

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

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.

Body Image
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

HIV and Body Image
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.

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.

Interventions Strategies Body Image
  • Address growth or pubertal delays e.g., growth
  • 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.

Peer Relationships
Peer Relationships
  • The focus of adolescent relationships shifts from
    family to peers, and the peer group sets behavior
  • 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.

Disclosure to Friends. Schooling. Peer
  • 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
  • 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.

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

Developmental tasks of early and late adolescence
that relate to sexuality
  • -Physical maturation
  • Cognitive emotional development
  • Social development (peer group sexual
  • Autonomy from parents
  • Forming ones gender (and sexual) identity
  • Internalizing ones sense of morality

  • 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

Effect of HIV on Sexuality in the Perinatally
Infected Teen
  • Impaired body imagelower self esteem
  • Delayed puberty
  • Threatened sexual intimacy
  • Transmission issues
  • Disclosure issues

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.

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.

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.

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

Reproductive Health/Family Planning
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

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
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
  • 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.

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
  • Ask the practitioner to explain all tests and
  • 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

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