framing the issue
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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
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