People living with HIV’s perceptions of care & treatment Damani Prevatt Goldstein CHART Principals & Partners Meeting February 02, 2007

Themes of presentation Background Methodology Consultations with PLHIV Dialogue meetings between PLHIV and providers Lessons learned Outcomes Next steps Questions

Background What is the Alliance? What are the Alliance programmes? –Prevention –Care & Support –Advocacy –Capacity Development What is the Alliance role in CHART? What was the purpose of 2006 activities in support of CHART?

Methodology Caribbean regional workshop on access to care & treatment Design of treatment journey methodology Consultations with PLHIV facilitated by support group leaders (Grenada, St Vincent, Barbados) Presentation and discussion between PLHIV, providers, clinic managers, NAPs Documentation Follow up

Methodology Led by PLHIV using care & treatment services Spark for discussion – not comprehensive Communication & negotiation skills Recommendations as well as perceptions Shared responsibility for quality Mixed group discussion – not ‘us and them’ Partnership building Follow up commitments - support

Consultations with people on treatment Location of care & treatment services Confidentiality Overburdening of few specialists Psychosocial & economic needs; not just medication Information on treatment, incl. side effects Client-provider communication Participation of PLHIV in service delivery

Dialogue meetings between service users & providers Confidentiality Adherence support Client-provider communication Treatment information Integration of services Greater involvement of PLHIV in care & treatment planning, training and delivery

Outcomes of process Presentation to junior doctors at hospital on service users experiences of care & treatment (Barbados) Peer adherence support - training & implementation Integration of AIDS clinic into general services (St Vincent) Layout of pharmacy section revised to increase privacy (St Vincent)

Lessons learned Demand exists for greater dialogue between service users and providers Engagement with CHART NTCs & NAPs from start of process PLHIV role in identification of training needs of service providers PLHIV role in training of service providers Peer adherence support – training and systems development Use waiting times – posters, leaflets, talks Client-provider communication

Next steps Partnering with NACC Care & Treatment Sub-Committee Consultation with service users and dialogue with providers - Trinidad Assisting development of peer adherence support system in Barbados Follow up support to implement commitments from dialogue meetings

THANK YOU! Questions? Contact Beverly Edwards at for more information and country