1. Experiences from eThekwini AWACC Elangeni Hotel, Durban 19 Nov 2015
Best practices in managing transition to Adulthood for Adolescents living with HIV
Experiences from eThekwini
AWACC
Elangeni Hotel, Durban
19 Nov 2015

2. Adolescence – the inevitable maze
Alexandra Nechita

3. Our future… their future view.
Client lists 3 life goals (High VL) versus her sister’s life goals (LDL) -
“To help my family “
“ To be with my family “
“To be good in my schoolwork “
Versus
“ Finish my studies( all of it)”
“ Doctor ( go to medical school )”
“ Actress ( act in horror movies )”

4. Growing up… society in transition
External
Internal
Complexity of life/relationships
Identity - forming
Ethnic/Racial
Gender/Sexual
Moral
Religious/Faith
Experimentation / impulsive / rebellious
Crisis is normal / time of pardoxes

5. Outline Part 1: Background – Why should I pay attention?
Part 2: Towards Adolescent and Youth friendly health services
Part 3: Clinical Cases – any quick fixes?
Part 4: Transition to Adulthood

6. HIV Prevalence by Age, Gender in South Africa (2012)
Adolescent girls are up to 8 times, while young women are more than 3 times, more likely to be infected with HIV than their male peers.

7. Summary of epidemiology
Adolescents (aged 10-19) accounted for an estimated 25% of all HIV infections in South Africa
Centre of the epidemic in terms of infection rates (incidence up to 2.54 in young females), vulnerability (teenage pregnancy, risk behaviour, gender-based violence, inequalities and impact)
Increasing numbers of perinatally infected children are now reaching adolescence
Increasing access to HCT and ART

8. What about health system response?
I am a real ADULT
Not a child, not yet an…

9. of all people living with HIV will know their HIV status
Focus on the cascade…
90%
of all people living with HIV will know their HIV status
90%
of all people diagnosed with HIV will receive sustained antiretroviral therapy.
90%
of all people receiving antiretroviral therapy will have durable suppression.
HCT Outreach Support
Linkage to therapy
Test
Early Paediatric Rx Initiation
Focus
Geographic
Treat
Adolescent Transition
Risk of treatment failure
Optimise

10. The eThekwini HIV treatment cascade5%
17%

11. Part 1: Take home messages Background – Why should I pay attention?
This is a sizable population
A growing population at the heart of the HIV epidemic
It is a unique population - labile physiological growth phase – pivotal to future productivity and function
Adolescents embody every community's hopes for the future. Adolescence is a time of vibrancy, self-discovery and rapid change or growth
Not children and not yet adults
Health care providers and health system ill equipped to deliver clinical and psychological services to adolescents living with HIV infection

12. Questions and Answers
Q. The adolescent package of HIV care closely resembles the package of HIV care for adults; however, the way services are delivered can impact their success among adolescents.
True
False

13. Adolescent Youth Friendly Services
Advocacy
MDT
Baseline
Training
Planning
Quality cycle
There are successful models of adolescent HIV care and treatment services. These models can be adapted and scaled-up nationally.
Health workers need the knowledge and skills to meet the specific needs of adolescent clients.

14. Characteristics of Youth-Friendly Services
Program design characteristics:
Youth involvement in program design and monitoring
Drop-in clients welcomed
Short waiting times
Set up to provide chronic disease management
Appointment and tracking systems in place
Affordable or free services
Publicity materials that inform and reassure
Friendly to male and female clients
“1-stop shopping”
Referrals to clinical and community-based services
Youth-friendly educational materials available to take away
Youth support groups
Peer Educators available
Source: Senderowitz, J., Solter, C., & Hainsworth, G. (2004). Comprehensive reproductive health and family planning training curriculum. 16: Reproductive health services for adolescents. Watertown, MA: Pathfinder International.

15. AYFS - implementation

16. Effective adolescent interventions
Motivational interviewing
Cognitive Behavioural
Incentives
Technology
*The Adolescent Medicine Network For HIV/AIDS prevention
*The Lancet 2014 – Rashida Ferrand et al

17. Challenges Health education, human rights Testing during adolescence
Condom use and prevention
Access to treatment and care
Substance use
Isolation / psychological transition and social complexity
Have unique psychological, cognitive, physiological and neurological developmental issues
Risk-taking behaviour
Adherence, Amplified barriers
Goals include wellness, economic participation and social cohesion

18. Part 2: Take home messages Towards Adolescent and Youth friendly health services
Regardless of how long they have been infected or how they acquired HIV, the package of care for all ALHIV is very similar.
The approach for all adolescents should be family-centered and developmentally appropriate.
While the components of the adolescent package of HIV care closely resemble those of the adult package, the way these components are delivered has an important impact on their uptake and success among adolescents.

19. A case of disclosure 13 year old male
Started ARVs at CHC: 01/05/2005: D4t/3TC/EFV
Transferred to Regional: Nov 2011
28/02/2012 ABC/3TC/EFV – Lipodystrophy on Stavudine
Partial disclosure: 5/12/2014 revisited disclosure counselling 4/2/15 + 6/8/15. Reluctance by caregiver is not allowing completion of full disclosure but counselling and support is on-going.
Date
CD4
Viral load
VL log
ARV regime
Baseline
39.22%
D4t/3TC/EFV
1642 / 43.7%
LDL
ABC/3TC/EFV
1948/40.14% -
991/ 34,28%
6567
3,82
1133
3.05
1133 / 33.97
14963
4.18
<40
<1.6

20. A case of recurrent defaulting
12 year old male
ART started: : D4T/3TC/EFV
PTB on abn CXR / TB symptoms/ smear negative:
Defaulted ART for 4 months. Returned to care on Restarted TB meds for Disseminated TB
Restarted ART at Regional: Aug 2011: ABC/3TC/EFV
Transfer ART care to CHC
Defaulted again for 7 months: May – Dec 2014
Returned back to care:
Reinitiated ART: : ABC/3TC/EFV
COR to second line: : AZT/3TC/LPVr
Completed full disclosure: .
Date
CD4
Viral load
VL log
ART regime
Baseline
623 / 14%
170000
822 / 23%
LDL
D4t/3TC/EFV -
785668
5.90
ABC/3TC/EFV
204 / %
362/ 14.45%
245506
5.39
361 / 13.64%
439 / 17.64%
189031
209209
5.32
84483
4.93
214 / 12.49%
296146
5.47
297
2600
3.41
AZT/3TC/LPVr

21. A case of peer support group intervention
18 year old male
ART started: : D4t/3TC/EFV
Current ART: second line: AZT/3TC/LPVr
? Exact date of initiation: old file lost
Full disclosure:
Date
CD4
Viral load
VL log
ARV regime
301
6332 ?
287 / 16.4%
552
2,74
AZT/3TC/LPVr
316 / 22.47%
6027
3.78
252 / 18.22%
3677
3.57 -
282
2.45
< 150

22. Part 3: Take home messages Clinical cases
Managing adolescent cases is difficult
One size does not fit all
There are no quick fixes
A multidisciplinary approach is required
A plan is required
Follow-up by the same team keeps things going forward

23. Questions and Answers (Continued)
Q. Disclosure to a child or adolescent is a one-time event for which the caregiver must be well-prepared.
True
False

24. Disclosure Process
SA HIV Disclosure Guidelines for Children and Adolescents 2014

25. Disclosure: Key Points
Disclosure is an ongoing process, not a one-time event.
Disclosure can help young clients access prevention, care, treatment, and support. It can also improve adherence, reduce stigma and discrimination, and slow the spread of HIV by helping people protect themselves and their partners.
Disclosure can result in health benefits for the child/ adolescent and caregiver.
Health workers and caregivers may face barriers to disclosure, such as not knowing where to start or feeling concerned about harming the child/adolescent.

26. Questions and Answers
Q. Adherence preparation and ART initiation can usually be completed in 1 visit.
True
False

27. Risk to treatment failure (ROTF): Purpose
Provide structured adherence support for patients with HIGH viral loads
Provide standardised adherence messages to common adherence barriers
Prolong the duration of Viral Load suppression on 1st line and 2nd line ART
Ensure timely and successful regimen changes
Limit the need for 3rd line ART

28. Role of MDT in ROTF Enhanced Counselling
Administrative staff – Get and review results, can flag the patient’s file, enter results/data on Tier.net
Counsellor – Offer standardised adherence messages and motivate patient. Facilitate support groups
Nurse/ Doctor – Standardised adherence support, clinical support, viral load monitoring and correct regimen choice.
Social Worker- Address psychosocial Issues

29. Summary of steps on the ROTF adherence worksheet
Session 1 – intensive
Session 2
Session 3
Viral load education review
Discuss adherence difficulties from month before / come up with solutions
Patient’s reason for high viral load
Mistakes in adherence
Follow up on referrals made
Time meds are taken + create TX plan
Do VL bloods for VL > 1000 group *
Storing meds + emergency supply
Preparing for travel/ trips away from home
(VL for group will be done at visit 5)
Motivation card
Session 4:
Discuss VL results*
Discuss adherence problems
Plan a way forward
Support system
Planning for drug/alcohol use
Getting to clinic appointments
Adapted from MSF Khayelitsha Treatment Failure Model

30. Adolescent support groups
Teens only communicate with other teens
Peer Pressure
Peer Counsellors
All have similar anxieties fears questions
Eg Sexuality, prognosis, child bearing,disclosure ,preventing transmission,transitioning to adults
Logical to discuss these in a group
Run by responsible person that teens trust
Can be run by older teens themselves with adult supervision
Set programme of topics for discussion

31. Health Education and Related Topics That Can Be Incorporated into Support Group Meetings:
Positive living
Finding work
Adherence
Strategies to reduce gender- based violence
Disclosure
Dealing with stigma
Sexual and reproductive health
Nutrition
Relationships and sexuality
Getting help for mental health problems
Preventing new HIV infections and positive prevention
Dealing with dying and the death of a friend or family member
Preventing OIs
Managing disabilities
Coping with school

32. Transition from Pediatric to Adult Care
The goal of transition is to ensure the provision of uninterrupted, coordinated, developmentally- and age-appropriate, and comprehensive care before, during, and after the transition.
ALHIV may face challenges:
In their transition to adult care
In learning to independently manage their own care
These challenges affect ALHIV, their caregivers, and health workers in pediatric and adult clinics.

33. Key Considerations for the Transition to Adult Care
All adolescents require support both within and outside of the clinic setting to take greater ownership over their health care, behavior, lives, and adherence.
The transition to adult care often occurs in parallel with an adolescent’s emotional and physical maturation. Effective transition must allow for the fact that adolescents are undergoing changes that impact much more than just their clinical care.
Health workers should:
Help ALHIV set and achieve goals for independence and self-management of care
Encourage ALHIV to develop as much independence as possible
Support caregivers to understand their changing role

34. Part 4: Take home messages Transition towards adulthood
Communication – seek first to understand
Managing the process, communication within the health system
Facility ownership of transition service – know and monitor your own data and targets
Managing Disclosure
Risk of treatment failure
Adolescent Support Groups
Creating a future worth striving for