Engagement of Recipients of Care

Stella Kentutsi

Executive Director, NAFOPHANU

National Forum of People Living with HIV/AIDS Networks in Uganda

March 29, 2019

Lusaka, Zambia

• RoCs-centered

• Meaningful

• Consistent

• Transparent

• Structured

• Equity

• Supported

• Practical

• Accountability

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Principles of Community Engagement

A structured, supported, meaningful and accountable process that ensures that people living with HIV have a seat and a voice in decision-making, planning, implementation, monitoring and evaluation in order to achieve access to and utilization of quality HIV care for all.

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Definition of Community Engagement

• Following GIPA/MIPA principles✓ Greater involvement of people living with HIV&AIDS

✓ Meaningful involvement of people living with HIV&AIDS

• Following national, sub-national and community levels

• Following DSD context

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Levels of Engagement

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Levels of Engagement

• Community/sub-national/national involvement has both bottom-up and up-bottom approaches

• The CQUIN dashboard community engagement domain gives the highest score to countries in which RoC belong to the national TWG, have a seat and a voice... is this sufficient?

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Involvement: Community and DSD

Representatives from the community of people living with HIV (PLHIV) and civil society organizations (CSO) are not involved in any activities related to DSD and there are currently no plans to engage these groups

PLHIV and CSO are not currently engaged in DSD activities, but engagement is planned or meetings and discussions are ongoing

PLHIV and CSO are meaningfully engaged in DSD implementation

PLHIV and CSO are meaningfully engaged in implementation and evaluation of DSDmodels

PLHIV and CSO are meaningfully engaged in implementation and evaluation of DSD, as well as oversight of DSD policy (e.g., via inclusion in DSD task force or other group) 7

The CQUIN Dashboard: Community Engagement Domain

• How

• Why

• When

• What

• To what extent?

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How engagement has been and what’s needed

• Community resource persons, known by different names, are volunteers at facility and

community levels (buddy system). Play various roles.

✓ Receiving and registering peers at facilities

✓ Stigma reduction, as peers are more comfortable dealing with each other

✓ Follow up on colleagues, returning lost to care, home visits, referrals and linkages

✓ Counselling

✓ Health education talks

✓ Drug distribution at facility and community refills

✓ Adherence/treatment buddies

✓ Screening for TB

• Need formal recognition and support both financial and technical to facilitate their work

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Community Engagement through Peer-to-Peer Support

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Investing in RoCs

IPs MOH

Funding has been largely to MOH and IPs, creating a disconnect between the two and the RoCs who just remain beneficiaries.Deliberate funding for ROCs must be undertaken.

ROCs

MOH

IPs

Now What we want to see

2-way to meaningfully contribute to DSD

• Have formal structures from village to district level for partners to find a stable team to work with and irrespective of DSD model, fall-back for people living with HIV at community level to belong

• Coordination meetings that bring all RoCs together at community, district and national level, part of feedback mechanism

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Coordination

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Advocacy

Who is going to make noise for

you?

• Most of the trainings have been dedicated to health workers,

so targeted capacity building for RoCs to support DSD

service delivery needed

• AIDS/TB competency training, to address their knowledge

gaps to serve RoCs better. • Could use the Support Appreciate, Learn and Transfer (SALT) model;

stage by stage appreciation and scoring of how much one knows and does

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Capacity-Building

Community dialogues have brought together people

living with HIV and those affected; duty bearers,

service providers, beneficiaries, CSOs/CBOs,

FBOs, cultural leaders at decentralized and national

levels

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Community Dialogues

• RoCs need simplified tools to monitor service delivery• For instance, NAFOPHANU and members monitor stock

levels/stock-outs on a monthly basis

• Should be part of teams to supervise and share experiences of what they go through

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Monitoring, Evaluation, Tracking

• RoCs should actually carry out research and should not be just subjects of research!

• In Uganda and other countries, RoCs have provided data to guide planning through the PLHIV Stigma index and Community score card (beneficiary satisfaction surveys)

• Knowledge dissemination

• Message development

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Implementation Research

• Participation in Policy formulation, implementation

and review, e.g. in Uganda, supported Uganda AIDS

Commission to develop the first ever national Anti

HIV stigma and discrimination policy

• The development of other guidelines, SOPs and other

manuals targeting PLHIV as RoCs must involve them

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Policy Issues

• We want to see a more resilient constituency of PLHIV, placed at the center of the

response, if we are to close the gaps

• A complete strategic framework for PLHIV involvement, at the epic of the

decision making, at all levels

• Challenges affecting PLHIV must be addressed; drug stock outs, stigma &

discrimination, rights’ violations, poverty, nutritional gaps

• Integration and alignment must be seen (walk the talk!)

• Involvement as programme designers, planners, implementers and evaluators

• Investment that is deliberate to make RoCs strong partners in the HIV/TB

responses

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Moving Forward / Next Steps

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Thank You!