The Involvement of People Living with HIV/AIDS

179 Pages·2003·2.27 MB·English

The Involvement of
People Living with
HIV/AIDS
in Community-based Prevention,
Care and Support Programs
in Developing Countries
A Multi-country Diagnostic Study
Acknowledgements
Authors
Christophe Cornu, International Study Coordinator and Principal Investigator, International
HIV/AIDS Alliance; Kathy Attawell, Consultant Editor.
Research Teams
Burkina Faso: Alfred Ouédraogo (Research Coordinator); Gisèle Kaboré, Augustin Sankara,
Soungalo Traoré (Research Assistants)
Ecuador: Doris Herrera and Norma Velasco (Research Officers); Alejandrina Maldonado (Research
Assistant)
India: Rajiv Dua (Research Coordinator); Vimla V. Nadkarni (Principal Investigator/Technical
Advisor for India); Bindiya Nimla (Research Officer); Vaishali Sharma Mahendra (Horizons India
Study Coordinator) at the regional Horizons/Population Council office in Delhi; Ujwala Bapat,
Suchitra Inamdar and Neha Sachdev (Research Assistants); William Monteiro (Office Assistant)
Zambia: Tashisho Chabala (Research Officer); James Sulwe (Data Collection Coordinator); David
Mwanza, Justina Namukombo, Eric Shimumbwe, Agatha Zulu Wachinga (Research Assistants)
United Kingdom: Pam Decho (Project Support Officer)
United States: Christopher Castle (Horizons Study Coordinator)
Partner Organizations
We wish to thank the management, staff members, volunteers and service users of the 17
community-based organizations and non-governmental organizations who participated in the study
in four countries:
Burkina Faso: AAS; ALAVI; AMMIE; La Bergerie-Foi, Univers, Compassion; REVS+
Ecuador: Dios, Vida y Esperanza; Esperanza; Siempre Vida; Vivir
India: CCDT; MNP+; Salvation Army Mumbai HIV/AIDS Community Development Program;
SOFOSH
Zambia: CHEP; Hope Humana; Kara Counselling; Salvation Army Chikankata Hospital
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Other Stakeholders
Burkina Faso: IPC; Inoussa Kaboré of the Population Council Office
Ecuador: CEPAR; Kimirina
India: TISS; Regional Horizons/Population Council Office; INP+; USAID Mission
Zambia: Winnie Lubasi of the Population Council Office; NZP+; Andrew Mlewa of ZIHP;
Dr Karen Shelley of the USAID Mission
International HIV/AIDS Alliance, United Kingdom
Diviya Bajpai; Kate Gibson; Gemma Hayes; Sue Lucas; Christine McLanachan; Mamisoa Rangers;
Garry Robson; Alice Rowley; Alejandra Trossero
Horizons Project, Washington D.C.
Julie Pulerwitz (seconded to Horizons from PATH); Ellen Weiss (seconded to Horizons from
ICRW)
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This study was supported by the Horizons Program. Horizons is funded by the US Agency for
International Development under the terms of HRN-A-00-97-00012-00. The opinions expressed
herein are those of the authors and do not necessarily reflect the views of the US Agency for
International Development.
The Population Council is an international, non-profit, non-governmental institution that seeks to
improve the wellbeing and reproductive health of current and future generations around the world
and to help achieve a humane, equitable and sustainable balance between people and resources. The
Council conducts biomedical, social science and public health research, and helps build research
capacities in developing countries. Established in 1952, the Council is governed by an international
board of trustees. Its New York headquarters supports a global network of regional and country
offices.
The International HIV/AIDS Alliance is an international non-governmental organization which was
established in 1993 to support community action on HIV/AIDS in developing countries. Since then,
the Alliance has supported over 1,150 local non-governmental organizations and community-based
organizations in 40 countries in Africa, Asia, Central Europe and Latin America to implement over
1,500 prevention, care and impact-mitigation projects.
Copyright © 2003 The Population Council Inc. and the International HIV/AIDS Alliance
Published in July 2003.
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Table of Contents
Executive summary 12
1. Introduction 22
1.1 Background 22
1.2 Objectives 23
1.3 Stakeholders 24
2. Study methodology 28
2.1 Choice of research sites 28
2.2 Participatory approach 29
2.3 Research team composition and training 34
2.4 Data collection methods 36
2.5 Study population 38
2.6 Data classification, analysis and validation 42
2.7 From research to action 44
3. Context: HIV/AIDS in Burkina Faso, Ecuador, India and Zambia 47
3.1 Socio-economic context 47
3.2 Health 48
3.3 HIV/AIDS epidemiology 49
3.4 Knowledge, attitudes and behaviors (KAB) 51
3.5 National responses to the HIV/AIDS epidemic: Governments 52
3.6 National responses to the HIV/AIDS epidemic: Civil society 54
3.7 National responses to the HIV/AIDS epidemic: PLHA involvement 55
3.8 Care and support for PLHA and affected people 57
4. Roles of PLHA in community-based programs:
A typology of PLHA involvement 59
4.1 Rationale for a typology of PLHA involvement in NGOs and CBOs 59
4.2 Characteristics of the participating NGOs and CBOs 60
4.3 Methodology used to develop the typology of PLHA involvement 68
4.4 The four types of involvement of PLHA 74
4.5 Involvement as an individual and organizational process 77
4.6 Access to services: A first step towards involvement? 77
4.7 Supporting the activities of NGOs: Inclusion of PLHA 80
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4.8 From service users to service providers: Inclusion and participation of PLHA in
the delivery of services 80
4.9 From participation to greater involvement of PLHA: Shaping programs and
policies 87
4.10 Tokenism and exclusion 90
4.11 Promoting “external” involvement 91
4.12 Conclusions: Many ways for PLHA to take part 92
5. Positive and negative effects of PLHA involvement: What is
meaningful involvement? 100
5.1 Methodology to measure the effects of PLHA involvement 100
5.2 Effects of involvement on PLHA 102
5.3 Effects of involvement of PLHA on the organizations and their services 111
5.4 Effects of involvement of PLHA on their families 119
5.5 Conclusions: What involvement is the most meaningful? 120
6. Factors limiting and enhancing the involvement of PLHA in
community-based prevention, care and support services 128
6.1 Introduction 128
6.2 Stigma and discrimination versus family and social support 129
6.3 Being involved: an individual choice 135
6.4 Development, empowerment and involvement 137
6.5 Organizational factors that limit the involvement of PLHA in NGOs: How
to build a supportive environment 143
6.6 Organizational factors that enhance PLHA involvement 150
6.7 Specific factors that limit and enhance the formation and sustainability of
self-help groups of PLHA 157
6.8 From access to greater involvement: a continuum of involvement for PLHA
and NGOs 159
6.9 Scaling up involvement through the creation of self-help groups:
Lessons learned 164
6.10 How to promote visible involvement of PLHA: Minimum conditions
for visibility 165
7. Recommendations 167
7.1 Recommendations for NGOs and CBOs 167
7.2 Recommendations for PLHA 171
7.3 Recommendations for organizations that provide NGOs with technical
and financial support 172
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References and Practical Resources on PLHA Involvement
Annexes 176
Declaration of the Paris AIDS Summit, 1 December 1994 176
Denver Principles 178
Tables, Boxes and Graphs
Tables
1.1 Stakeholders 25
2.1 Summary of NGO participation in the research process 32
2.2 Summary of study participants 40
2.3 Summary of data collection methods 41
3.1 Demographic indicators and geographic data 47
3.2 Development indicators 48
3.3 Health indicators 49
3.4 HIV/AIDS epidemiology 50
4.1 Types of NGOs 61
4.2 Services and activities of participating NGOs 63
4.3 Users of HIV/AIDS services of participating NGOs 65
4.4 Service providers of participating NGOs 66
4.5 Areas of involvement of PLHA in NGOs and CBOs 66
4.6 General typology of PLHA involvement 69
4.7 Definition of access: Areas of involvement of PLHA 74
4.8 Definition of inclusion: Areas of involvement of PLHA 75
4.9 Definition of participation: Areas of involvement of PLHA 76
4.10 Definition of greater involvement: Areas of involvement of PLHA 76
5.1 Advantages and disadvantages of access 121
5.2 Advantages and disadvantages of inclusion 123
5.3 Advantages and disadvantages of participation 124
5.4 Advantages and disadvantages of greater involvement 126
Boxes
2.1 Ethics of research 31
2.2 Results of a brainstorm “What is research?” during the orientation workshop
in Zambia 35
2.3 Results of discussion of data collection methods during the orientation
workshop in Zambia 38
2.4 Criteria used to select study participants from NGOs 39
2.5 Lessons learned from the methodology of the diagnostic study 44
2.6 Follow-up study in Burkina Faso 46
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6.1 Socio-demographic characteristics of PLHA involved 143
6.2 What is a supportive environment for PLHA involvement? 150
6.3 What information and training for PLHA involved in CBOs and NGOs? 155
6.4 Definition of self-help groups 157
Graphs
4.1 Time spent by PLHA in NGOs 93
4.2 Remuneration of PLHA involved in NGOs 93
4.3 Areas and levels of expertise used by PLHA involved in NGOs 95
4.4 Areas and levels of involvement of PLHA in the decision-making process 97
4.5 Types of involvement and levels of vocality 98
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Terminology
Advocacy A process to bring about change in the attitudes, practices, policies and laws of
influential individuals, groups and institutions, carried out by people proposing improvements on
behalf of themselves or others.
Beneficiary In this report, beneficiary is used interchangeably with service user and refers to:
• People living with HIV/AIDS (PLHA) or people affected by HIV/AIDS who request and use
the care or support services of one or several non-governmental organizations (NGOs) or
community-based organizations (CBOs) on a regular or occasional basis.
• PLHA or people who are HIV negative who benefit from the prevention activities of NGOs or
CBOs on a regular or occasional basis.
Care and support Efforts that aim to improve the quality of life and life expectancy of PLHA and
people affected by HIV/AIDS.
Community-based organization (CBO) Group and association formed by people living within
specific communities that works at the local level and mostly seeks to ensure benefits for its
members. CBOs do not always require formal procedures, such as legal registration.
Community services and activities Services provided and activities undertaken by an NGO or
CBO at community level, for or with the community. This study analyses community HIV/AIDS
prevention, care and support services and activities.
Discrimination toward PLHA See stigma.
Empowerment In this report, empowerment refers to a process whereby PLHA, or other groups
that are stigmatized or discriminated against, develop their capacity to participate in and gain
control over the decision-making process that affects them. Empowerment enables them to speak,
be listened to, define their perspective on the issue in question, be recognized, respected and treated
as equal citizens. The purpose of empowerment, at both individual and collective level, is to allow
PLHA to influence the process of social change.
HIV-negative service providers Service providers of the participating NGOs who did not identify
themselves as PLHA during the study. This may mean that they do not know their HIV status or
they know they are HIV positive but do not wish to disclose it.
Involvement At the Paris AIDS Summit in 1994, 42 governments signed a Final Declaration on the
importance of the “Greater Involvement of PLHA” (GIPA) in the response to the HIV/AIDS
epidemic. Since then, most stakeholders, such as United Nations (UN) agencies and AIDS activists,
have used the word “involvement” rather than “participation”, which is commonly used in social
science. For this reason, this study uses the term “involvement”.
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While the Paris Summit noted that PLHA can be involved in a range of areas and at different
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levels, this study analyzed PLHA involvement with specific reference to prevention, care and
support services of NGOs and CBOs.
This research was based on the assumption that PLHA can take part in the activities of NGOs and
CBOs in many different ways. One of the main study objectives was to develop a conceptual
framework to identify these different types of involvement and their characteristics. Together with
this typology of involvement, the study has developed a new terminology where the word
“involvement” is used in two ways:
1. As a generic word to describe any way in which PLHA take part in NGO or CBO activities;
2. As a specific way in which PLHA take part in the activities of NGOs, or type of
involvement, described by the term greater involvement; the other types being access,
inclusion and participation.
Involvement is italicized in the term “greater involvement” when it refers to one of the four types of
involvement identified by the study (2) rather than to generic involvement (1). The terms “access”,
“inclusion”, “participation” are also italicized when they refer to particular types of involvement.
Chapter 3 of this report includes detailed definitions of access, inclusion, participation and greater
involvement. Adjectives such as inclusive, participatory, or verbs such as involve(d), participate are
also italicized when they refer specifically to the corresponding types of involvement.
Non-governmental organization (NGO) Formally registered not-for-profit organization that seeks
to address a particular need or cause. NGOs are generally larger than CBOs and may be local,
national or international.
Person affected by HIV/AIDS In this study, the term “person affected by HIV/AIDS” refers to:
• Those living with a PLHA (wife/husband/partner, children, parents, brothers/sisters).
• Those who are part of the close circle of a PLHA but not living with them, who are personally
involved in the care and support of one or more PLHA.
The definition used therefore excludes people who provide care and support to PLHA in a
professional capacity.
Person (or people) living with HIV/AIDS (PLHA) This study only includes as PLHA those who
are HIV positive and aware of their seropositive status. Many people infected with HIV do not
know that they are seropositive because they have not taken a test, or have taken a test but do not
know the result. In this report, the terms “seropositive”, “positive” and “HIV positive” are used
interchangeably. PLHA are sometimes referred to as PWA (people with AIDS). When the study
refers to the involvement of PLHA in NGOs and CBOs, PLHA can be service users of the
organizations (former, current and potential service users), as well as positive people who have
never used and will never use the services provided by these organizations.

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Declaration of the Paris AIDS Summit, 1 December, 1994, in UNAIDS, From Principle to Practice: Greater
Involvement of People Living with or Affected by HIV/AIDS (GIPA).
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