AIDS 2012 - Turning the Tide Together

Navigating Transition and Staying Healthy: Supporting Youth to Manage their HIV

CareAndrew FullemAIDSTAR-One

Framing the Issue

• We should be celebrating• Choices to be made• Issues– Kids are kids – Health systems under stress– Under-utilized community structures– Physical and mental factors of clients– The role of care givers

Framing the Issue

“A multifaceted, active process that attends to the medical, psychological, and educational or vocational needs of adolescents as they move from the child focused to the adult focused health care ”

Reiss and Gibson 2002

Framing the IssueIssue Factors

Challenges to caring for adolescents with HIV infection

• Adherence

• Sexuality

• Chaotic lives

Barriers to transitioning adolescents with HIV infection

• Prior experience

• Lack of autonomy

• Changing relationships

Vijayan et al. AIDS Care 21(10):1222-9

Framing the Issue

Individual Environmental Facility/Clinical Current age of

adolescent Alcohol/substance

use Advanced HIV Day-to-day life Attending school Sexuality Depression Poverty Stigma

Transport Access to

clinic Poverty Stigma

Pill burdens Stockouts of

medicines Side effects Poverty Stigma

Issues to Address Regarding Transition of HIV Care and Support

Source: Nachenga et al. (2009)

Evidence of Success

• Limited evidence • Success in the United

States and Europe• Testing of model– Botswana– Zimbabwe– South Africa – Zambia

Evidence of Success/Approaches

Evidence of Success/ApproachesClinical management

Envisioning a future (8-12)

to explain medications and reinforce adherence messages for those already on ART

Talk about adherence issues

Link to counseling (including lay or peer) for any mental health issues

Working Toward Responsibility

(13-16) Talk to the adolescent

about diagnosis, medications, and adherence

Talk to adolescent about how to seek clinical care for symptoms or emergencies

Link to counseling (including lay or peer) for any mental health issues

Capacity to Transition(17-19)

Review clinical history with the adolescent

Help identify appropriate adult providers/clinics

Solicit questions about care, treatment, and potential future changes in treatment

Link to counseling (including lay or peer) or any mental health issues

Source: Hodgson et al. (2011), Jacob and Jearld (2007), and Reiss, Gibson, and Walker (2005).

Evidence of Success/Approaches

Adapted from Maturo et al. 2011.

Phase One: The provider begins to discuss the

transition process with the client and caregiver using

the Comprehensive Transition Checklist (CTC) to

review the self-care progress of the adolescent

Phase Two: The client and caregiver meet with the

provider and discuss the CTC in the contexts of improving

self-care, medication independence, adherence,

etc.

Phase Three: The client has the first checkup without

the caregiver at the clinic. The provider and client use the CTC to review self-care

goals that include medication independence,

adherence, etc.

Phase Four: Constant communication and regular follow-up with community care providers that include

psychosocial support, mental health, sexual and

reproductive health services, disclosure, etc.

Evidence of Success/ApproachesCommunity Care and Support for HIV-Positive Children and AdolescentsClinical care: Diagnosis Monitoring Management of OIs Counseling ART 

Community care: Support groups: Psychosocial support (PSS),

counseling, positive living education, nutrition, gardens, treatment literacy

Community outreach: PSS, counseling, home-based care, positive living education, child tracing, treatment literacy, caregiver training, adolescent sexual and reproductive health

Adherence supporters: PSS, counseling, home-based care, positive living education, child tracing, treatment literacy

Support and training center: PSS; counseling; home-based care; positive living education; adolescent-led PSS training; adolescent-led information, education, and communication materials; recreation activities; skills training; education and medical assistance.

Providers: Ministry of Health and

Child Welfare City Health Private Clinics

Provider: Zvandiri Community Care and Support Model

Table 8. The Zvandiri Model for Psychosocial Care for ALHIV from Zimbabwe

Remaining Challenges • The Goal

– Holistic care– Meets adolescents where they

are– Guides them to a positive future

• How to get there– Adolescent centered care– Multidisciplinary programs– Engaging families and care givers

Remaining Challenges

• Who has a voice?

• Addressing special needs– Married/coupled youth– Gender– Sexual minorities– Mental health– Substance

Remaining Challenges

• Creating an evidence base• Sharing successes and challenges• Scaling up• Fostering local leadership• Measuring results– Short-term– Longitudinal study