1. Levels of Participation in
HIV Prevention
Prof. Dr. Michael T. Wright, LICSW, MS Dipl.-Psych. Karl Lemmen
Institute for Social Health Deutsche AIDS-Hilfe
Catholic University of Applied Sciences Berlin Berlin
(KHSB)
2nd Conference on Quality in HIV Prevention in the European Region
23-24 April 2012, Berlin

2. What is Participation?
• More than just being there!
• The power to affect change in areas important for one’s life and
the life of one’s community
• This includes the power to define the issues regarding health
and well-being and to influence the measures taken to address
these issues
• The more influence one has on decision-making processes
affecting these issues, the larger his/her participation
Wright & Lemmen, Workshop PQ, 23.04.12, Berlin

3. Why Participation?
 According to the WHO Ottawa Charter (1986), self-
determination is at the core of health promotion
 International community development has shown that lasting
positive change is dependent on active citizen participation
 The science and practice of public health has shown that
community-based approaches are most promising for improving
the living situation of people most affected by health issues
Wright & Lemmen, Workshop PQ, 23.04.12, Berlin

4. What Does Participation Look Like?
 How do we know that participation is actually taking place?
 What criteria can we use to judge whether we have been
successful in enabling participation?
Wright & Lemmen, Workshop PQ, 23.04.12, Berlin

5. “The idea of citizen participation is a little
like eating spinach: no one is against it in principle
because it is good for you.”
“There is a critical difference between going through the
empty ritual of participation and having the real power
needed to affect the outcome of the process.”
Sherry Arnstein (1969) A Ladder of Citizen Participation. Journal of the American Institute of
Planners, No. 4: 216-224.
Wright & Lemmen, Workshop PQ, 23.04.12, Berlin

6. Participatory
HIV Prevention
Means a Change in
Perspective
Wright & Lemmen, Workshop PQ, 23.04.12, Berlin

7. Conventional Prevention Participatory Prevention
Programs Programs
Beneficiary as client Beneficiary as consumer of services and
(person in need of help) as partner
Prevention worker as expert who defines Prevention worker as catalyst who
and solves health problems supports beneficiaries in defining and
solving health problems
Prevention work consists of counseling, Prevention work is an activating,
treating, and conditioning the supportive activity promoting agency
beneficiary
Services are delivered in a formal setting Services are provided on an outreach
basis
Prevention is about communicating Prevention is about helping beneficiaries
accepted social norms regarding a find their own language and approaches
healthy lifestyle which fit their life situation
The goal of prevention is getting people The goal of prevention is empowering
to adapt “healthy behaviors” people so that they can take action on
health issues
Wright & Lemmen, Workshop PQ, 23.04.12, Berlin

8. Participation is a Developmental Process
 Participation is not an either/or proposition, but rather a
developmental process for all concerned
 Critical reflexivity and a successful cooperation between
stakeholders promote participatory processes
 Participation depends on both the abilities and experience of the
stakeholders as well as various contextual factors faced by
professionals and beneficiaries
 The task is to strive for the level of participation which can be
reached under the current conditions and to identify what needs
to change in order to increase participation
Wright & Lemmen, Workshop PQ, 23.04.12, Berlin

9. Levels of Participation
Level 9 Community-Owned Goes beyond
Initiatives participation
Level 8 Decision-making
Authority
Level 7 Partial Delegation of
Decision-making Participation
Authority
Level 6 Shared Decision-
Making
Level 5 Inclusion
Level 4 Consultation Preliminary Stages of
Participation
Level 3 Information
Level 2 Instruction
Non-Participation
Level 1 Instrumentalization
Wright & Lemmen, Workshop PQ, 23.04.12, Berlin

10. Non-Participation
The perspective of the beneficiaries is not taken into account
Level 1: Instrumentalization
– The concerns of the beneficiaries are disregarded
– Decisions are made apart from the beneficiaries
– The interests of the decision-makers are primary
– Beneficiaries as “decoration”
Level 2: Instruction
– The situation of the group is given attention
– The health problem is defined from the perspective of the decision-makers
(professionals)
– The opinions of the beneficiaries are not taken into account
– The communication is one-way and directive
Wright & Lemmen, Workshop PQ, 23.04.12, Berlin

11. Preliminary Stages of Participation
Beneficiaries are increasingly included in planning and implementation but without any
direct influence on the decision-making process
Level 3: Information
– Decision-makers (professionals) tell the beneficiaries what problems they have
and what help they need
– Various behaviors and actions are recommended by the professionals
– The professionals explain their actions
– The perspective of the beneficiaries is taken into account in order to maximize
the acceptance of the messages developed by the professionals
Level 4: Consultation
– The professionals take an active interest in the perspectives of the beneficiaries
– Beneficiaries are passively consulted (for example, by way of questionnaires)
Level 5: Inclusion
– The professionals seek active consultation on the part of the beneficiaries (for
example by entering a dialogue with certain people from the beneficiary group)
Wright & Lemmen, Workshop PQ, 23.04.12, Berlin

12. Participation
A formale, binding role for beneficiaries in decision-making processes
Level 6: Shared Decision-Making
– The professionals routinely consult with beneficiaries
– Decisions are made in terms of negotiating solutions between professionals and
beneficiaries
– Beneficiaries have a formal right to be heard in decision-making processes
Level 7: Partial Delegation of Decision-Making Authority
– Beneficiaries have a formal role in decision-making processes, meaning they
can also block decisions being made
– This role is limited to specific aspects of planning or implentation
Level 8: Decision-Making Authority
– All major aspects of planning and implementation are decided by the
beneficiaries themselves
– There exisits a partnership between all stakeholders (including the
beneficiaries)
– Beneficiares receive active support from professionals for their actions
Wright & Lemmen, Workshop PQ, 23.04.12, Berlin

13. Beyond Participation
All actions planned and implemented under the direction of the beneficiaries
Level 9: Community-Owned Initiatives
– The responsiblity for planning and implementation lies exclusively in the hands
of the beneficiaries
Wright & Lemmen, Workshop PQ, 23.04.12, Berlin

14. Methods for Participatory Quality Development
more participatory
potential Service User
Advisory Committee
Guided Working
Open Space
Group
Focus Group
Rapid
Assessment
Recording the Requests
and Concerns of the
Beneficiaries
Observation
less participatory
potential
Wright & Lemmen, Workshop PQ, 23.04.12, Berlin

15. Summary
 Participation is a core principle of health promotion –
and of HIV prevention
 Participation is not an either/or proposition, but rather a
developmental process for all concerned
 Participation can be concretely described and can be
implemented gradually, step-by-step over time
Wright & Lemmen, Workshop PQ, 23.04.12, Berlin