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HIV Perinatally-Infected Adolescents A Developmental Approach Developed by faculty of the New York/New Jersey AETC Texas/Oklahoma AETC Florida/Caribbean.

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Presentation on theme: "HIV Perinatally-Infected Adolescents A Developmental Approach Developed by faculty of the New York/New Jersey AETC Texas/Oklahoma AETC Florida/Caribbean."— Presentation transcript:

1 HIV Perinatally-Infected Adolescents A Developmental Approach Developed by faculty of the New York/New Jersey AETC Texas/Oklahoma AETC Florida/Caribbean AETC In collaboration with the AETC National Resource Center March 2004

2 2 Topic Outline  Number of adolescents perinatally-infected with HIV  Adolescent development and effect of HIV: teen, family and provider perspectives  Interventions  Case studies –Autonomy-independence –Body image –Peer relationships –Sexuality/Risk-taking –Future planning –Transitioning

3 March 20043 Where we are and what is to come  CDC (1999) estimated that there were 10,000 perinatally HIV-infected children living in the United States  2400 of these children were teenagers  Increasing numbers will be reaching adolescence in next 5 years

4 March 20044 HIV Infection* and AIDS in 13 –1 9-Year-Olds Reported in 2001

5 March 20045

6 6

7 7 Mental Health and Psychosocial Issues  With chronic illness, transition to young adulthood is characterized by psychological distress  Many teens with HIV deal with  Deaths of parent (s), siblings, friends  Poverty, substance abuse, violence, trauma, abuse, neglect  Lack of family support, community, teachers, schools, society  Anger/fear/depression about diagnosis

8 March 20048 Overview of Adolescence  Physical, cognitive, and emotional changes  Developmental tasks  Defining a sense of identity  Establishing autonomy  Exploring sexual and substance use decision- making  Establishing positive, intimate peer relationships  Mastering abstract thought processes

9 March 20049 Autonomy and Independence  Becoming an autonomous, self-directive person is a fundamental psychosocial task of adolescence. “I want to come to my appointments by myself”

10 March 200410 Teen Perspective Autonomy and Independence  “Why do you have to tell my mom everything?  “No one trusts me!”  “I’m not taking another pill until you tell me what’s wrong with me!”  “Why didn’t anyone tell me my diagnosis sooner? Didn’t anyone think I can handle it?”

11 March 200411 Provider and Family 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 provider-child relationships

12 March 200412 Parental Issues Autonomy and Independence  Expectations that the teen should be independent and self-sufficient or  Fear of letting go  Going away to college  Getting their own apartment “ We have to remind her to take her medicine every night—how will she do it if she lives on her own?”

13 March 200413 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

14 March 200414 Interventions Managing Their Own Care  Information: What do they know and need to know?  Adherence to treatment and care  Where is the teen in continuum of managing medications?  Teen’s health beliefs and attitudes  Empowering the teen  What are your expectations?  Taking charge of their healthcare  Change their sense of entitlement—“You have to earn this”

15 March 200415 Interventions & Strategies Autonomy  What are the teen’s goals?  Involve teen in discussing medications and treatment  Consider short-term vs. long-term care plan  Evaluate behavioral and environmental factors influencing adherence  Assess psychiatric disorders

16 March 200416 Body Image  Adolescence is a time to define oneself; body image is in the forefront. “Am I developing normally?” “Do I look OK?” “Am I sexually attractive?”

17 March 200417 HIV and Body Image  Growth and development  Lipodystrophy  Wasting  Obesity  Skin conditions  Medical appliances

18 March 200418 Teen Perspective Body Image  “I want to be as tall as my friends”  “When will my periods start?”  “I can’t get a tube in my stomach— it will show...!”  “How will I ever get a date?”

19 March 200419 Provider 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 teen’s caregiver, not teen/child

20 March 200420 Interventions & Strategies Body Image  Address growth or pubertal delays  Consider a proposed treatment’s effect on body image and lifestyle  Involve teen in decisions  Be willing to change treatment plan

21 March 200421 Peer Relationships  The focus of adolescent relationships shifts from family to peers, and the peer group sets behavior standards. “Yeah I have a tattoo— all my girlfriends have one.”

22 March 200422 Dynamics of Teen Behavior & HIV Peer Relationships  If friends are doing it—they want to do it too  Invincibility and risk-taking  Skin carving, tattoos, body piercing  Sexual experimentation  Drugs and alcohol  HIV may or may not alter risk-taking behavior  If they don’t know their diagnosis and are asymptomatic, they can be “regular kids”

23 March 200423 Disclosure to Friends 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?”  “Gram is always at me about my meds, only like once I didn’t take them—I slept over a friend’s house and she didn’t know, so I was like, nah.”

24 March 200424 School Peer Relationships  Most are in school  May be behind in grade, have cognitive delays or special learning needs  Absenteeism may be an issue  Many are active in school & after school activities

25 March 200425 School Peer Relationships  Non-contact sports are encouraged  Disclosure to the school is rare  Education and/or vocational training are important

26 March 200426 Teen Perspective Friends & School “ HIV makes me live an isolated life.” “I can’t be honest with my friends—people won’t understand.” “HIV is not the focus of my life.” “School is a waste—I’m not going to be around to graduate.”

27 March 200427 Provider Perspective Peer Relationships “ HIV limits many teen developmental experiences.” “Many of our kids aren’t allowed to go on sleepovers with their friends.” “It doesn’t matter what I say to them, they are going to do it anyway. I’ve come to accept it.”

28 March 200428 Supporting Healthy Peer Relationships  Convene peer support groups  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

29 March 200429 Sexuality  Accepting one's physique  Beginning to define self as a sexual being  Forming new,more mature relations with both boys and girls  Achieving masculine or feminine social role  Preparing for commitment and family life “Nobody will love me— how will I tell them about my HIV?”

30 March 200430 Adolescent Risk-Taking  Drug and alcohol use impairs judgment, and can precede sexual activity  Added significance in HIV-positive teens  Provider responsible for education - secondary prevention

31 March 200431 Youth Sexual Behaviors: Grades 9–12 General Population  46% ever had sexual intercourse  14% ever had four or more sex partners  33% had sexual intercourse in the past 3 months  42% did not use a condom during last sexual intercourse  82% did not use birth control pills during last sexual intercourse  89% had received HIV/AIDS education

32 March 200432 Effect of HIV on Sexuality Perinatally Infected Teen  Impaired body image—lower self esteem  Short/small for age  Illness effects  Medical appliances  Delayed puberty  Threatened sexual intimacy  Transmission issues  Disclosure issues

33 March 200433 Teen Perspective Sexuality  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.”  “I’m going to yes them to death because I can’t tell them the truth.”

34 March 200434 Provider Responsibility Anticipatory Guidance  Discuss sexual anatomy and function  Discuss and provide or refer for contraception  Teach “AIDS 101” regarding transmission  Discuss safe and responsible sex

35 March 200435 Provider Responsibility Anticipatory Guidance  Discuss behavioral skills to prevent transmission  Encourage caregivers to recognize need for teen sexual identity  Have videos, pamphlets, youth magazines in the clinic/office

36 March 200436 Planning for the Future  As abstract thinking develops, adolescents begin to plan for the future, defining their functional role in society, e.g. goals, education, job or career. “ I’m older now— I actually have to do something with my life.”

37 March 200437 HIV and Plans for the Future  Planning for the future is hard for 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

38 March 200438 Interventions School 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

39 March 200439 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 March 200440 Transitioning “Purposeful, planned movement of adolescents and young adults with chronic illness/disability from child-centered to adult oriented systems—health, employment, independent living.” Patience White, MD Transition is a process, not an event.

41 March 200441 Principles of Healthcare Transition  Begin healthcare transition early  Continuity of care is the goal  Transition planning should be comprehensive  Involve teen and family  Providers and parents should be prepared to facilitate movement  Service coordination, communication and collaboration between providers is essential

42 March 200442 Interventions & Strategies Transition  Maintain a relationship with teen and family  Stimulate discussion about teen’s future  Understand the nature and implications of teen’s chronic illness  Determine time for transition discussions based on teen's development and needs  Practice family-centered care

43 March 200443 What can young people do? Transition  Start talking about upcoming transition  Acknowledge and accept developmental change  Accept adulthood responsibly  Take charge of healthcare information  Be a bridge, a mentor

44 March 200444 Transition Resources Healthcare Age 14–16 Age 17–19 Age 20–24 Meet privately with youth for part of visit Encourage youth to assume increasing responsibility of own health care Education Focus on youth’s course of study as it relates to their long-term plans and goals Employment Initiate discussion of different routes to employment, e.g. higher ed or technical training Practitioner Transition Checklist & Timeline

45 March 200445 Case Studies

46 March 200446 Kyle, 15 years old Kyle is short for 15 and Tanner stage 1. He has a left-over G-button for meds and nutritional support that he wants out. He hates being short and not developing sexually. He is is depressed and doing poorly in school. He told his girlfriend he has sickle cell anemia.

47 March 200447 Kyle (continued) Kyle’s CD4 is 400, VL 38,000. His adherence to medication is poor. He presently has a fungal infection on his arm and hand. His grandmother is not involved in his care and is not supportive.  What are the clinical issues?  What are the psychosocial issues?  What are Kyle’s priorities and what can you do for him?  What are the other possible interventions ?

48 March 200448 Felicia, 19 years old You’ve been caring for Felicia since birth. She’s classified as AIDS with a history of LIP, recurrent herpes and zoster. Her CD4 count is 128 and VL 3500. She started on ZDV in 1989 and has been on most ARVs. Felicia is short and sexually undeveloped. She dropped out of school at 16. She is living with an aunt and has moved among family members since grandma died 4 years ago.

49 March 200449 Felicia (continued) You have been informed by hospital administration that all 19 year olds will be transitioned to adult HIV services. Felicia states, “I guess I will just quit taking care of myself. No one will ever notice or even care.”  What are the issues?  How will you respond?  What interventions would you recommend?

50 March 200450 Jennifer, 17 years old Jennifer is a straight A student and a model patient. She wants to go away to college but her grandparents are terrified. They say, “We have to remind her to take her medicine every night living here, how will she do it if she lives on her own?” They worry, “What doctors will take care of her?” Jennifer’s CD4 count is 580 and her VL is undetectable—due to “constant supervision”  What are the issues?  What can you do for Jennifer and her grandparents?

51 March 200451 Michael, 17 years old Michael is a 17 year-old perinatally-infected teen. He is quite ill and knows he is going to die, perhaps in months. He desperately wants to leave his mark on the world. He tells you “I have to find an HIV-positive girl, so she can have my baby.”  What are the issues?  What interventions are possible for Michael?

52 March 200452 Siomara, 15 years old Siomara lives with her sister Maria (her “best friend”) and Maria’s family. She hates school—is going to drop out because her grades are so bad. She doesn’t know what she’s going to do with her life. She really misses her mom who died of AIDS 5 years ago. She remembers how her mom suffered, so she always tries to take her ARVs. Her VL is undetectable and CD4 count is 675.

53 March 200453 Siomara (continued) Siomara tells you she’s never had sex but really wants to have a boyfriend. She tells guys about her HIV at the start of every relationship with bad results. She says, “rejection hurts.”  What interventions and possible strategies would you suggest?  What resources do you have?

54 March 200454 Tamara, 16 years old  Tamara comes to your office for her routine care. As usual, her mother is with her. Tamara lets you know she wants to speak with you alone.

55 March 200455 Tamara (continued) Mom agrees to leave the room. Tamara says “I’m worried—my period is very late.” (She had menarche at 15 but has irregular periods). Her last period was approximately 6 weeks ago. She started to have sex 2 months ago—they used a condom, but it broke. She’s had sex twice since then with no problems with the condoms.  What are the issues?  Do you involve Mom? How?

56 March 200456 Resources  AETC National Resource Center Website

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