wright lemmen levels of participation

Levels of Participation inHIV Prevention

2nd Conference on Quality in HIV Prevention in the European Region23-24 April 2012, Berlin

Prof. Dr. Michael T. Wright, LICSW, MSInstitute for Social Health

Catholic University of Applied Sciences Berlin (KHSB)

Dipl.-Psych. Karl LemmenDeutsche AIDS-Hilfe

Berlin

Wright & Lemmen, Workshop PQ, 23.04.12, Berlin

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

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


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?


“The idea of citizen participation is a littlelike eating spinach: no one is against it in principlebecause it is good for you.”

“There is a critical difference between going through theempty 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.


Participatory HIV Prevention

Means a Change in Perspective


Conventional Prevention Programs

Participatory Prevention Programs

Beneficiary as client

(person in need of help)

Beneficiary as consumer of services and as partner

Prevention worker as expert who defines and solves health problems

Prevention worker as catalyst who supports beneficiaries in defining and solving health problems

Prevention work consists of counseling, treating, and conditioning the beneficiary

Prevention work is an activating, supportive activity promoting agency

Services are delivered in a formal setting

Services are provided on an outreach basis

Prevention is about communicating accepted social norms regarding a healthy lifestyle

Prevention is about helping beneficiaries find their own language and approaches which fit their life situation

The goal of prevention is getting people to adapt “healthy behaviors”

The goal of prevention is empowering people so that they can take action on health issues


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


Levels of Participation Level 9

Community-Owned Initiatives

Goes beyond participation

Level 8

Decision-making Authority

Participation

Level 7

Partial Delegation of Decision-making Authority

Level 6

Shared Decision-Making

Level 5

Inclusion

Preliminary Stages of Participation

Level 4

Consultation

Level 3

Information

Level 2

Instruction

Non-Participation

Level 1

Instrumentalization


Non-ParticipationThe 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


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)


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


Beyond ParticipationAll 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


less participatory potential

Recording the Requests and Concerns of the

Beneficiaries

Observation

Service User Advisory Committee

Rapid Assessment

Open Space

Focus Group

Guided Working Group

more participatory potential

Methods for Participatory Quality Development


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 levels of participation

Health & Medicine