Empowering Caregivers for ART Success in Children and

Empowering Caregivers for ART Success in Children and Adolescents Guardian Session guidelines for PIH-EQUIP Teen Club Scale Up 2016 -2017 Lilongwe, Malawi Prepared by Selamawit E. Deressa MD, MPH and Julie K. Parent, MSW

Outline • Conducting the caregiver sessions • Adherence q What is it and Why is it important q Adherence and Adolescents • Disclosure? q What is it? q Benefits q Barriers q Timing q Process q Impact • Information about the Teen Club model • References

Conducting Caregiver Sessions • Invite 25 -30 caregivers • Plan for 2 -3 hours of open discussion using this PPT as a guide to facilitate the session • Find a private meeting area to conduct the session • Guardian Sessions can be done on: • The same day as teen club, but in a separate room, or on another convenient day • Provide refreshments for caregivers • Explain the benefits of adherence and disclosure, address barriers, answer questions and provide guidance • Discuss the availability of health care worker to assist with disclosure • Explain the basic of Teen Club model

Session Topic: Adherence The following information can be use to guide the discussions with the caregivers: Adherence: • Why is adherence to ART important? • To understand this, caregivers need to know: How HIV replicates in the body and How ART works to restore immunity?

What does HIV do to the immune system? • When the HIV virus first enters the body, it crosses into CD 4 (Immune Cells) and produces millions of new viruses • The CD 4 cell then dies and the new viruses are released into the blood to infect new uninfected CD 4 cells • This process continues in vicious cycle until the majority of the CD 4 cells are gradually killed (Low CD 4 Count) • Then the person becomes immuno-deficient and susceptible to opportunistic infections or AIDS related cancers

How Does ART Work? • ART is a combination of antiretroviral medications that work together to make the HIV “sleep” • ART does not cure HIV • ART only prevents the virus from producing more copies and destroying the CD 4 cells • When the virus is asleep, the CD 4 cells reproduce and increase in number • The immune system is restored again and the person will be able to fight diseases • To keep the virus “asleep”, ART must be taken at the right time, at the right dose, everyday for LIFE

What is Adherence to ART? Adherence to ART is: taking the right dose, at the right time, everyday for life, and attending scheduled clinic visits regularly

Why is Adherence to ART important? (1) • In order for the virus to remain suppressed, there should be an optimal level of ART drugs in the blood • This can only be achieved by a very good adherence • Non- adherence leads to sub-optimal level of ART in the blood, which then allows the HIV virus to resume replication • Viral replicates in the presence of ART, results in genetic mutation which protects the virus from the current drugs • HIV virus can become resistant to ART very quickly • Only a few missed does, just 1 -2 missed dose per week, has the highest risk of developing resistance

Adherence and Adolescents • Transitioning from childhood to adulthood is challenging, with personal responsibility, relationships and life plan • Adding HIV and adherence to this challenging time makes these years much more difficult • Children and teens need to understand the importance of adherence when they have been disclose of their HIV status, to help them adhere to medication • Approach adherence counseling with teens cooperatively • Work with teens to problem solve difficulties and help them achieve good adherence

Examples of Barriers to Adherence • Lack of family support • Lack of stable home environment • Moving homes frequently • Lack of money for transport • Boarding school • School holiday • Unexpected guests at home • Unexpected stays away from home

Adherence Counseling for Teens (2) § During adherence counseling for teens: • Ensure they understood why they are taking the medication • Praise their efforts and attempts at good adherence • Discuss and find out when they are most likely to miss their medication • Work with the teen to help the TEEN identify methods that are most helpful reminders. • The Health Care Worker or Lay Worker should offer suggestions, but the final choice must be made by the teen

Session Topic: Disclosure • Disclosure means revealing to a child or adolescent that either they or their caregiver is HIV+. It is a process of adjustment in understanding HIV and the life challenges it poses(3). Disclosure is a series of conversations over time 4). • Non-disclosure o No information about HIV is given, even if the child asks o Questions are deflected, ignored or only general information is given • Partial-disclosure o Some insight is given about health status, but without mentioning HIV or ARVs • Full-disclosure o Honest and full information about HIV is provided and discussed

Benefits of Disclosure (3 -7) • Greater understanding about HIV • Prevents accidental disclosure • Extended discussions about HIV in the family • Improved adherence and clinic attendance • Fulfilling the right to know about issues concerning personal health • Improved coping mechanisms and relief from the stress of hiding HIV • Active participation in treatment • Responsible sexual behavior • Making it acceptable to talk about HIV reduces stigma • Increased support to infected parents • Acceptance of HIV+ people

Barriers to Disclosure (3 -7) Parents and Caregivers: x Discomfort discussing HIV with children x Lack of knowledge, skills or emotional preparedness x Not wanting to worry or upset children x Perception that children will not understand or cope well x Expecting behavior problems or damaged relationship x Concerns that children will live in fear of death or dying x Feelings of shame and guilt x Fears of being judged by the child x Fears of stigma or rejection if the child tells others Health Care Workers: x Inadequate knowledge or counselling skills

When to Disclose (3, 4, 7) • When a child starts asking questions about their illness or medications, it is a good time to start with gradual disclosure • Consider the child’s level of cognitive development and their ability to understand what is being said • Younger children should be informed gradually, accommodating their emotional maturity and preparing for full disclosure • School age (6 -12) children should be told if they are HIV+ (WHO)

The Process of Disclosure (7) • Direct To support children with adherence to ARVs, caregivers may tell the children directly that they are HIV+ • Third-party or Assisted Approach A parent or caregiver requests assistance from a health care worker or family members to help with disclosure

The Role of Health Care Workers (3, 6) • Encourage testing of all family members (index case testing) • Support decisions on when to disclose - respect the family’s timing • Educate caregivers and equip them with skills and materials, including on how to answer uncomfortable questions (ie. sex) • Assist parents to deliver honest age appropriate facts about HIV • Encourage acceptance of status and adherence • Give detailed explanations of issues related to disclosure • Facilitate the process by assuring privacy, confidentiality and support

After Disclosure (3 -7) Parents: • Relief from finally explaining the illness • Unhappiness, depression, guilt, regret, or uncertainty if children act differently after disclosure Children: • A range of negative emotions including fear, anger, disbelief, sadness, or depression • Crying, followed by relief • Improved adherence and better attitude towards treatment

Teen Club Basics • PIH-EQUIP Teen Clubs are adolescent friendly ART Clinics that offer all the clinical services of a weekday ART Clinic but it is done on a Saturday to avoid disrupting school attendance. • Teen Clubs are peer support groups and information sharing forums for adolescents living with HIV (fully disclose of their HIV status) • Purpose of teen club: • To provide a safe, welcoming and nurturing environment • To develop and reinforce good habits and ensure healthy transition into adulthood • To provide quality care for adolescent living with HIV

Services provided during Teen Club: • Clinical Services: Vital Signs, ART Refills, Consultations, Viral Load Testing, Sexual Reproductive Health Information • Psychosocial Services: Adherence Counseling, Guardian Support (if needed), Partner Disclosure • Education: Staff, Volunteers and/or Mentors will prepare and provide one session from the Baylor Curriculum • Recreational Activities: Balls, Board Games, Music, Crafts, etc. • Refreshment: A snack and/or beverage

References 1. www. who. int (Use of ART in Adults and Adolescents) 2. Baylor College of Medicine International Pediatric AIDS Initiative- Malawi Teen Club Curriculum(Part 1) 3. Guideline on HIV disclosure counselling for children up to 12 years of age, World Health Organization 2011 4. Patterns of Disclosure of HIV- Status to Infected Children in a Sub-Saharan African Setting Lara M. E. et al. J Dev Behav Pediatr. 2011 May; 32(4): 307– 315. 5. Disclosure of HIV status to children in resource-limited settings: a systematic review, Vreeman RC et al. Journal of the International AIDS Society 2013, 16: 18466 6. A model for HIV disclosure of a parent’s and/or a child’s illness Gachanja and Burkholder (2016), Peer. J, DOI 10. 7717/peerj. 1662 7. Determinants and processes of HIV status disclosure to HIV - infected children aged 4 to 17 years receiving HIV care services at Baylor College of Medicine Children’s Foundation Tanzania, Centre of Excellence (COE) in Mbeya: a cross-sectional study Mary S. Nzota, corresponding author Joseph KB. Matovu, Heather R. Draper, Rose Kisa, and Suzanne N.

Thank you!