Adolescent HIV Care; from the Cradle to the Rave

1. Adolescent HIV Care; from the Cradle to the Rave!! Rana Chakraborty

2. Objectives

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

5. including transfers to other centres after March 2006 373 children still alive & in paediatric care - 12 left the country (8 before 2005, 4 since 2005) - 4 lost to follow-up (all before 2005) - 17 transferred to adult care (10 before 2005, 7 since 2005) - 27 died (7 before 2000, 3 in 2000, 5 in 2001, 2 in 2002,4 in 2003, 5 in 2004, 1 in 2006) including transfers to other centres after March 2006 373 children still alive & in paediatric care - 12 left the country (8 before 2005, 4 since 2005) - 4 lost to follow-up (all before 2005) - 17 transferred to adult care (10 before 2005, 7 since 2005) - 27 died (7 before 2000, 3 in 2000, 5 in 2001, 2 in 2002,4 in 2003, 5 in 2004, 1 in 2006)

6. Hospital admission, AIDS & mortality rates reduction in AIDS and death from around 13 AIDS/deaths per 100 child years in 96 to about 3 per 100 child years with a continued reduction even in the last years Similar dramatic reduction in death with continues from 8 /100 child years in 96 to 1/100 And also continued reduction in hospital admission over time Factors associated with AIDS & mortality ratesFactors associated with AIDS & mortality rates Declines in AIDS and mortality rates continued in children aged >=1 year Mortality in infants <1 year decreased post-1997 but the risk of AIDS was the same pre- and post-1997 No effect of ethnicity, sex or place of birth Children identified prospectively had half the rate of AIDS/death v those presenting after birth This is in contrast to the adult cohort data published recently in the lancet showing xxreduction in AIDS and death from around 13 AIDS/deaths per 100 child years in 96 to about 3 per 100 child years with a continued reduction even in the last years Similar dramatic reduction in death with continues from 8 /100 child years in 96 to 1/100 And also continued reduction in hospital admission over time Factors associated with AIDS & mortality ratesFactors associated with AIDS & mortality rates Declines in AIDS and mortality rates continued in children aged >=1 year Mortality in infants <1 year decreased post-1997 but the risk of AIDS was the same pre- and post-1997 No effect of ethnicity, sex or place of birth Children identified prospectively had half the rate of AIDS/death v those presenting after birth This is in contrast to the adult cohort data published recently in the lancet showing xx

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 adults�to 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 they�ve 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, Asperger�s 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, teen�s 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 teen�s medical needs Disease progression may warrant extreme measures e.g. central line Treatment plans have historically been developed with child�s 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 treatment�s 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 it�they 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 don�t 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 child�s/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 teen�s 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 one�s gender (and sexual) identity Internalizing one�s 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 image�lower 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; he�s like my parent. I can�t talk to him about sex. I don�t 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 Key�stay 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 early�build 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

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 transitions�GCSE�s, 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