HIV/AIDS-RELATED STIGMA AS AN OBSTACLE IN SERVICE DELIVERY: OPEN SPACE TECHNOLOGY WORKING GROUP CONFERENCE REPORT OF PROBLEMS & SOLUTIONS FEBRUARY 22-25, 2005 MONTECASINO JOHANNESBURG SOUTH AFRICA

Empowerment Concepts David Patient & Neil Orr www.empow.co.za [email protected] [email protected] PO Box 13043 Nelspruit 1200 South Africa

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

CONTENTS Acknowledgements Background of facilitators Conference participants Open Space Technology: The Method Conference Program Working Group Reports: Group Discussion 1: WHAT EXACTLY IS STIGMA? IS IT THE SAME OR DIFFERENT TO DISCRIMINATION? Report 1:

ATTITUDES AND PERCEPTIONS OF RELIGIOUS LEADERS: EFFECTS UPON SERVICE DELIVERY & STIGMA WITHIN COMMUNITIES

Report 2:

MEN NOT ALLOWING PREGNANT WIVES TO BE TESTED

Report 3:

HOW CHILDREN THAT ARE LIVING IN HOMES AFFECTED BY HIV, DEAL WITH STIGMA

Report 4:

HOW DOES THE MEDIA PROMOTE/REDUCE STIGMA IN IT’S MESSAGING AND HOW DOES THIS IN TURN AFFECT SERVICE DELIVERY

Report 5:

HOW BEST TO EMPOWER PLWHA’s AND THOSE AFFECTED TO OVERCOME/DEAL WITH FEELINGS & PERCEPTIONS OF HELPLESSNESS, IN TERMS OF BEING STIGMATIZED BY OTHERS

Report 6:

PROGRAM DESIGN, PLANNING & FUNDING: THE CRITERIA THAT WE NEED TO KNOW HIV STATUS BEFORE DELIVERY TO BENEFICIARIES. HOW CAN WE IDENTIFY WITHOUT STIGMATIZING?

Report 7:

WHY ARE PEOPLE UNWILLING TO GO FOR VCT (NON-WORKPLACE AREAS & COMMUNITIES)

Report 8:

HOW DO WE GET PEOPLE TO COME BACK FOR THEIR (VCT) RESULTS?

Report 9:

WHY PEOPLE DO NOT ACCESS FREE VCT AND HEALTH CARE (WORKPLACE) WHEN IT IS AVAILABLE?

Report 10:

PRACTICAL STRATEGIES TO OVERCOME STIGMA IN HEALTH CARE SETTINGS

Report 11:

HOW DO WE DEAL WITH FAMILY AND COMMUNITY REACTIONS TO CHILDREN(HIV+, KNOWN) WHOSE PARENTS HAVE DIED?

Report 12:

HOW DO WE TALK TO FAMILY MEMBERS WHO ARE LIKELY TO BE HIV+, WITHOUT STIGMATISING THEM?

Report 13:

REPAIRING (STIGMA-RELATED) DAMAGE CAUSED BY PREVIOUS PROGRAM APPROACHES

Report 14:

EMPOWERING COMMUNITIES TO IDENTIFY AND DEAL WITH STIGMA

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

Report 15:

EMPOWERMENT/SELF-STIGMA: WHAT WILL UNDO THE (SELF-STIGMA) FEELINGS OF LOW WORTH, SELF-HATE, SELF-JUDGEMENT, AND FEELING SEPARATE?

Report 16:

WHAT CAN PEOPLE LIVING WITH HIV OR AIDS DO OR SAY (OR NOT DO OR SAY) IN PULIC FORUMS, TO HELP REDUCE STIGMA?

Report 17:

MEDIA : HOW CAN WE ‘USE’ THE PHENOMENA OF ‘STIGMA’ TO MOTIVATE CHANGE (REGARDING DONORS)?

Report 18:

HOW DO WE PROVIDE HOME BASED CARE (HBC) WITHOUT STIGMATIZING OR DISCRIMINATING AGAINST THE PATIENTS?

Report 19:

WHAT IS THE ROLE OF THE LANGUAGE USED BY TRADITIONAL HEALERS AND HEALTH CARE WORKERS IN FURTHER PERPETUATING STIGMA?

Report 20:

WHAT ROLE CAN THE YOUTH PLAY IN ADDRESSING (REDUCING) STIGMATIZATION WITHIN FAMILIES AND COMMUNITIES?

Report 21:

STIGMA & GENDER : ARE WOMEN MORE STIGMATIZED THAN MEN? IF SO, WHY?

Report 22:

HOW DO WE MONITOR AND EVALUATE THE SUCCESS OF STIGMAREDUCTION INTERVENTIONS?

Report 23:

SENIOR STAFF VERSUS JUNIOR STAFF: ARE THERE DIFFERENCES REGARDING SELF-STIGMATIZING? IF SO, HOW DO WE REACH THEM? TRAIN SEPARATELY

Report 24:

HOW DOES SYMPATHY VERSUS ACKNOWLEDGING PERSONAL RESPONSIBILITY FOR CHOICES MADE, IMPACT UPON STIGMA (REGARDING NOT ACCESSING SERVICES)?

Report 25:

HOW DOES THE ATTITUDES (E.G. EGO; SELF-RIGHTEOUSNESS) OF CARE PROVIDERS STAFF IMPACT UPON STIGMA? WHICH IS THE BIGGER PROBLEM?

Report 26:

IF STIGMA IS CHARACTERIZED BY ISOLATION AND FEAR, THEN: WHAT IS THE FIRST STEP TO CRACK THIS? WHO MUST DO THIS FIRST STEP?

Report 27:

SERVICE PROVIDERS AND STIGMA: WHAT CAN SERVICE PROVIDERS DO (OR SAY), OR NOT DO (OR SAY) IN PUBLIC FORUMS, TO HELP REDUCE STIGMA?

APPENDIX 1: BRIEF CHECKLIST OF LEGISLATION IN DIFFERENT COUNTRIES APPENDIX 2: MOVING ON (SONG LYRICS) – BELIEVE DHLIWAYO

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

PARTICIPANTS Angella Rubarema

Modiehi (Priscilla) Kekana

Min. Gender, Labour & Social Development Program for Children & Youth Uganda Coca Coal Limpopo South Africa

Isobel van Zyl

Coca Cola Fortune Northern Region South Africa

Criselda Kananda

SA Post Office South Africa

Linzi Smith

NOSA AIDS Management Solutions South Africa

Diana Teffo

Alex AIDS Orphans Project South Africa

Shaun Mellors

South Africa Independent consultant Intl. Fed. Of Red Cross & Red Crescent Societies Geneva, Switzerland

Felicita Hikuam

Dr Warnow Elon Isaac

Gombe State PMTCT Nigeria

Linnet van Staden

Tsogo Sun South Africa

Pelky Makahane

Emnotweni Casino Tsogo Sun South Africa

Margriet Wilkens

Emnotweni Casino Tsogo Sun South Africa

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[email protected] 0925677922204 PO Box 3161 Kampala, Uganda 082-550-9982 PO Box 2867 Modimolle Nylstroom 0150 [email protected] [email protected] 082-787-4593 PO Box 4336 Polokwane / Pietersburg 0700 [email protected] 082-448-8366 PO Box 7317 Halfwayhouse Midrand [email protected] 083-631-6667 106 George Avenue Sandringham [email protected] 083-369-9703 PO Box 2318 Bramley 2018 [email protected] [email protected] +41-0798166471 17 Chemin des Crets Petit Saconnex Geneva, Switzerland [email protected] Gombe State PMTCT C/o Gombe State UNICEF Assisted Program [email protected] 011-510-7418 Private Bag X118 Bryanston 2021 [email protected] 082-558-9139 PO Box 13666 Nelspruit 1200 [email protected] 082-551-7199 PO Box 19059 Nelspruit 1200

Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

Filipe Charles

CARE International Mozambique

Chipo Chiiya

Intl. AIDS Alliance Zambia (Southern)

Jennifer Mulik

Worldvision US

Susan Rammekwa

Jhb Child Welfare Society

Estelle Jobson

Soul Beat Africa

Heidi-Lee Stockenstrom

CC Africa – Londolozi

Roelene Beumer

CC Africa

Diane Coleman

C-Safe

Maria Tokwani

Care Zimbabwe

Joy Chigogora

Adra Zambia

Rejoice Farai Mutibvu

Catholic Relief Services – Zimbabwe

Peter Ng’ona

Catholic Relief Services – Zambia

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[email protected] CARE Moz Nampula PO Box 368 [email protected] P.O. Box Lusaka, Zambia [email protected] 300 I St. NE Washington DC 20024 [email protected] 30093 Ext. ll Meadowlands 1852 [email protected] P.O. Box 31963 Braamfontein 2017 [email protected] P.O. Box 240 Mooinooi 0325 [email protected] P.O. Box 240 Mooinooi 0325 [email protected] 2511 Fairfax Avenue Nashville TN37212 USA [email protected] P.O. Box 937 Highlands Harare / or 8 Ross Avenue Belgravia, Harare [email protected] [email protected] Adra-Zambia P.O. Box 31309 Lusaka, Zambia [email protected] 85 Central Avenue Box CYllll Causeway, Harare [email protected] 026-097-890752 Catholic Relief Services Plot 106, Great East Road, Lusaka PO Box 38086, Lusaka Zambia

Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

Patience Hamayanda

C-Safe Zambia

Khesiwe Ncube

World Vision – Zimbabwe

Beauty Nyirenda

World Vision – Zambia

Gerald Shitima (PLHA)

C-Safe

Believe Dhliwayo

Vital Hope Support Group – C-Safe

Patricia Ulaya

ADRA – C-Safe Zambia

Susan Chabala

CARE Zambia

Kate Greenaway

C-Safe Southern Africa

Sedibeng Ngubane

Tsogo Sun Gaming Wellness Program South Africa

Judy Miller

Empowerment Concepts Facilitator

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[email protected] 026 096433291 Catholic Relief Services Plot 106 Great East Road Rhodes Park Lusaka [email protected] 193 Cowdray Park P.O. Luveve Bulawayo, Zimbabwe [email protected] Box 31083 Lusaka Zambia [email protected] CRS P.O. Box 38086 Lusaka Zambia [email protected] [email protected] 37 Twentydales Road Hartfeld Road Harare, Zimbabwe [email protected] [email protected] 095-752-468 c/o Mr. W.D. Ulaya P.O. Box 32379 Lusaka, Zambia [email protected] 095-818596 CARE International P.O. Box 60256 Livingstone, Zambia [email protected] 082-466-7651 Box 5251, Weltevreden Park Johannesburg 1715 South Africa [email protected] 082-582-7997

[email protected]

Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

Acknowledgements This conference would not be possible without the considerable support of Tsogo Sun Gaming, who has provided the venue at a substantially reduced rate. Our thanks to them for making this possible.

Background of Facilitators David Patient is one of the longest-surviving people living with HIV in the world today. His journey with HIV and AIDS began in the early days of the pandemic, in March 1983, when he was diagnosed as having full-blown AIDS. Blood samples drawn at that time were later (1985) confirmed to be HIV-positive. His experience with stigma is extensive, both personally and in the work he does in many countries. He lost his job due to his HIV status, had bomb threats, bricks thrown through his windows, graffiti sprayed across his car, animals poisoned, and been ostracized by ‘friends’ when his status was revealed in a newspaper article soon after his diagnosis. He has also experienced the difficulties in obtaining insurance, home loans, visas, and the range of beaurocratic discrimination that accompanies living with HIV. His basic philosophy regarding stigma is: “People treat you the way you teach them to treat you”. I.e., stigma is something that needs to be tackled head-on, and not allowed to Remain unchallenged Email: [email protected] Neil Orr is a research psychologist, who has been working in the area of HIV and AIDS since 1985. He is the author of Positive Health, currently the most widely used book on how to live with HIV, nutritionally, medically, and psychologically. Email: [email protected]

David and Neil are the principal members of Empowerment Concepts, a company devoted largely to development and capacitation work in the developing world, largely focused upon issues of poverty alleviation and HIV/AIDS. Their experience includes most countries of East Africa, and all countries in Southern Africa. Both David and Neil believe – based upon their experience throughout Africa and Asia – that stigma is one of the principal obstacles to service delivery (medical, and non-medical) to those infected and affected by HIV and AIDS. The reader can read several articles on stigma – and other topics – on their web-site: www.empow.co.za.

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

OPEN SPACE TECHNOLOGY: THE METHOD The principles of OST are simple: •

Get a group of people together who have a common concern, and who have experience in the area of concern. There are no pre-conceived ‘answers’ – only a passion and commitment to find answers. Ask them what concerns them, and then ask them to generate solutions. Record this.

•

The function of the facilitators is to promote discussions and thinking.

•

Participants only contribute to issues that concern them. Participants create the contents and outcomes of the conference. All ideas and solutions are shared with all participants. They leave with a report of the entire process.

The method is unusual for those who have attended conventional conferences, where delegates typically sit and listen to ‘experts’. Often, issues and questions of great concern are simply never discussed. In OST, the delegate – the people with the experience of the problem – are the ‘experts’, as they have the real issues and realities in mind. Some basic OST ‘rules’: •

If you raise an issue, you take responsibility for convening a work group on that issue. Why? Because the best person to convene a work group is someone who is passionate about the issue.

•

If you are not interested in a specific issue, don’t get involved. You’ll get the report at the end anyway. Only get involved with what interests you.

•

Several work groups will occur at the same time. You can get up and go to another group at any point in time. No reasons need to be given. This is called the ‘Bumble Bee’ principle. When you have given – or hear – what you want to give or hear, move along. This allows for ideas to be ‘cross-pollinated’ (transferred) from group to group.

•

You can sit out any session. You can chat around the coffee station. You can sit alone and just think. However, at the beginning of any day, and the commencement of the sessions after lunch, be present.

•

Each work group is chaired by the person who raised the issue. Another person will record what is said. The record is handed in, and checked by an administration person so that it can be typed up. A draft copy is posted on the Village Notice Board for corrections the next day. Corrections (if any) are made. Then it is placed into the report.

•

A work group session is about 1 hour. You are given 20 minutes to nail down the ‘real problem’, and 40 minutes to discuss solutions.

•

If you have an issue of concern to you, but no-one else is interested, then write a report by yourself.

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

CONFERENCE PROGRAM Day 1: Start:

09:00-10:15

Tea break: Session 1: Lunch: Session 2:

10:15-10:45 10:45-12:30 12:30-13:30 13:30-16:30

Tea break: Session 3:

14:30-14:45 14:45-16:30

Registration Introductions Different strokes for different folks (memes) Brain-storming exercises: Problem identification/specification Generating solutions (methods) Brain-storming exercises continued: Empowerment versus Rescuing Raise & record the issues

The issues raised in the Session 3 are collated and arranged to a schedule, which is posted on the Village Notice Board by 8:30am on Day 2. Delegates write down which group sessions they want to attend. From this point forward, the process becomes very fluid, and adapts according to the participants’ needs and processes. Tea breaks will occur more-or-less at 10:45 am and 14:30 pm. The following program is merely a guideline: Day 2: Start:

09:00am 09:15-10:00 10:00-10:15

Tea break: Session 4:

10:15-10:45 10:45-11:45 11:45-12:30 12:30-13:30 13:30-13:45 13:45-14:45 14:45-15:00 15:00-15:45 15:45-16:30

Lunch: Session 5: Tea break: Wrap Day 2

Welcome Group discussion: Stigma – what is it? Over-view of OST methods in the groups Participants sign up for work groups Work groups Results reported to conference group Discuss dynamics of work groups Work groups Results reported to conference group Q&A

Day 3: Start:

Tea break: Wrap Day 3

09:00-09:15 09:15-09:30 09:30-10:45 10:15-10:45 10:45-11:45 11:45-12:30 12:30-13:30 13:30-14:30 14:30-15:15 15:15-15:30 15:30-16:30

Start:

09:00

Closing:

12:00

Tea break: Session 6: Lunch: Session 5:

Welcome Participants sign up for work groups Presentations for day 2 Work groups Results reported to conference group Work groups Results reported to conference group Q&A

Day 4: Open discussion of what was learned Report handed to each participant

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

Group Discussion 1: WHAT EXACTLY IS STIGMA? IS IT THE SAME OR DIFFERENT TO DISCRIMINATION? It is not possible to discuss ‘stigma’ until we know what we mean by the word. Is it the same as ‘discrimination’? The word ‘stigma’ means ‘mark’, such as when farmers brand their animals with some sign or symbol. It is understood to indicate a physical sign that has been made. How are people physically ‘marked’ in HIV? Two ways: 1. The blood – HIV test result 2. AIDS (illness) symptoms that are visible. People avoid being stigmatized by refusing to get tested. You cannot get ‘marked’ until you are tested. However, this is only a delay measure, as you will be ‘marked’ when you start getting sick (AIDS). So is ‘stigma’ the same as ‘discrimination’? Delegates felt that they were not the same. It was stated that stigma has got to do with how people feel and think about someone, while discrimination has got to do with what people do (actions) against the person. In essence, stigma is an internal process – usually of fear – which gets justified somehow (e.g., the person is a burden, a sinner), which then leads to discrimination (actions that separate the other person, or harms them). It is therefore not possible to make laws or policies against stigma, as these are internal feelings and thoughts. You can, however, counsel, educate, and try to change people’s hearts and minds. You can make laws and policies against the discriminatory behaviour that comes from stigma. One delegate shared the experience where she – a service provider with knowledge and experience – found herself afraid and wanting to separate her brother who was ill with AIDS. She intellectually knew is was safe to take care of him, but the feelings of fear remained. It took will power to overcome the fear, and take care of him. Where does this irrational fear come from? Why is there an irrational impulse to ‘mark’ (stigmatize) someone, and then act to separate them from yourself? Also, it was noted that in the research, the main reason people gave for not accessing services was the fear of being rejected, and not the occurrence or experience of seeing others rejected when they tried to access those services. I.e., it is not what is happening that people are afraid of, but rather what might happen (rejection). The following possibilities were suggested: 1. That we all experience the fear of rejection as connected to our very survival as infants. Perhaps this fear of potential rejection is thus based in deep memories that our survival is dependant upon remaining in the group. It is therefore an unconscious fear of rejection. 2. ‘Utilitarianism’: Survival of the greatest number of people, at the expense of individuals. This has it’s roots in anthropology, where our ancestors used to leave the sick and aged behind if they could no longer travel. As the group’s survival depends upon the ability to follow herds of animals in their migration, those that could not travel could hold the group back, causing them to starve to death (the group). Therefore, they were left

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts behind. It is possible that – particularly in a resource-poor situation – people living with HIV (or other qualities that are stigmatized) are viewed as utilizing resources that are scarce, for no benefit of the group, as they will (it is believed) die. Therefore, to improve the chances of survival of the group (family/community) stigma-based behaviour may be viewed as a pro-survival mechanism. The presentation of PLWHA as ‘victims’ and ‘sufferers’ makes this perception more real, and entrenches stigma. It is also no surprise – given the above – that the AIDS = DEATH message we have used for so long to persuade people to resist from high risk behaviour, has had a reverse effect in terms of stigma. We wanted to scare people, and now they are scared! However, it was also pointed out that people are not just the product of their past and ancestry: We also have the capacity to reason, learn, and act with compassion, despite our fears. Therefore, although the task may be long-term, we need to address the underlying fears associated with stigma, even the irrational ones. We can also begin the process of defining a community identity, with clearly defined values that oppose stigmatization. In conclusion, there are two dimensions to ‘stigma’: 1. The feelings (internal) against the ‘marked’ person; 2. The behaviour that is motivated by the stigma feelings (discriminatory behaviour). We need to address both aspects.

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

Report 1

ATTITUDES AND PERCEPTIONS OF RELIGIOUS LEADERS: EFFECTS UPON SERVICE DELIVERY & STIGMA WITHIN COMMUNITIES Convener: Shaun Mellors Contributors: Cherylynn O’Brien; Neil Orr; David Patient; Gerald Shitima (PLHA)

The problem: Religious leaders can ‘stigmatise’ people by the way in which they talk, and refer to people living with and affected by HIV. This can take the form of moral judgments, ‘fire & brimstone’ sermons etc. Places of worship are seen as places of safety, comfort, spiritual rejuvenation, and education. Leaders are also seen as moral and spiritual leaders. Therefore they have a responsibility to be educated and sensitive to the needs of the community. Holy books (Bible, Qu’uran etc) texts can be misrepresented or interpreted. Conflict with official position of religious institution and what happens in reality. Religion deals with morals, beliefs and values. Stigma deals with morals, beliefs and values. Constant clash.

Ideas / actions / suggestions / experiences focused upon solutions: Identify a key ally (respected leader) within the religious institution to speak publicly, or begin to influence/dialogue with such leaders. E.g. Archbishop Tutu, Dalai Lama. Have high level discussions and/or education within religious institution to educate and sensitize first, then develop official policy, then filter down. Conduct/encourage inter-denominational educational interactions to discuss and define an effective and appropriate ‘religious response’. Integrate stigma-reduction strategies in education for religious institutions e.g. counselors, home-based carers. Use source material (texts) more constructively, effectively – e.g., “What would Jesus do?” Religious institutions to re-enforce meaningful education strategies/approaches (use sex as the solution, not the problem, communication in relationships, intimacy etc.) Use positive clergy more effectively to address stigma and as role models. Create and encourage an environment for disclosure (and acceptance) within church, temple, mosque. Encourage religious institutions to become advocates on key advocacy issues.

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

Report 2

MEN NOT ALLOWING PREGNANT WIVES TO BE TESTED Convener: Dr Warnow Elon Isaac Contributors: Maria Tokwani; Priscilla Kekana

The problem: Background to the problem in Nigeria: 3450 women came to ante-natal clinic where they received education (health). Only 1240 opted for VCT, and 2210 women (the remainder of 1240) could not be tested until they had told their husbands. Husbands are mainly 80% Muslims. Women were denied PPTCT (Prevention of Parent To Child Transmission) privileges because the husband said if they tested positive, they would divorce them. Of the 1240 who opted for VCT, 90 of these tested positive and 75% disclosed to their spouses. Fifteen (15) men came to health centers (of the 90 women who tested positive) for partner testing. Upon investigation, the reasons given for husbands denying their pregnant wives access to PPTCT program privileges, by refusing that they get tested, were: - If positive, divorce. - Just do not want to know their status - What God has done there is nothing that we can do about it - Once tested positive, this will bring shame to the family - No drugs for treatment for the positive mothers (i.e. ARV’s), so why bother testing? - No infant formula for formulars - No confidentiality in the health workers - The women say they are discriminated against by health workers.

Ideas / actions / suggestions / experiences focused upon solutions: Sensitisation of Traditional leader/opinion leaders (e.g. politicians), and all CBO’s. Mass media (we did advocacy visits and workshops). Attending community dialogues, anti-natal and health care worker dialogues. All these being done, need a follow-up to make sure the trained people cascade the information to the grass root levels. Incentives for free testing for partners whose husbands are positive, and treatment options for husbands. For pregnant mothers, give incentives like PPTCT plus i.e. treatment (ARV’s) for the mothers), formula for infants (i.e. given infant feeding options & plus). Get husbands involvement in anti-natal clinics at least once per trimester. This should be enacted as law by government. Try to de-stigma through mass media campaigns. Community sensitization to be done in such a way that memes of different groups and stakeholders are taken into consideration (in this case penetrate through the blue meme. Health workers need to be trained on inter-personal communication and confidentiality.

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

Report 3

HOW CHILDREN THAT ARE LIVING IN HOMES AFFECTED BY HIV, DEAL WITH STIGMA Convener: Chipo Chiiya Contributors: Diana Teffo; Angella Rubarema; Criselda Kananda; Susan Rammekwa

The problem: Children are not aware of stigma, so labeling by adult is a problem (stigmatized), i.e. calling them names. They also experience isolation, especially at school. They are seen as a burden. Children grow up without family values, norms, self respect. They also lose their sense of identity. Harmful beliefs attached to such children in some cultures. Ethiopian case – seen as children with evil spirits The attitude of the community can be bullying. Because of lack of knowledge, there is ignorance by families and communities about the transmission of HIV. No parental guidance leads to illiteracy. Fear of casual contact with PLHAs. Thinking they might catch HIV or might be infected.

Ideas / actions / suggestions / experiences focused upon solutions: Strengthen the extended family system, by empowering families, such as reminding them of their values. Provide the children with essentials, such as food and school fees. Sensitise the community on how to help these children – take it as a community responsibility – community leaders. For blue meme groups, focus upon religion faith, and with orange meme groups, focus upon scientific knowledge. Green meme, human rights. Help the community to identify the problem using the ‘problem tree approach’ (see notes on the following page) Programs to be inclusive to reduce isolation and labeling of AIDS orphans. Each program should have an HIV/AIDS component – streamlining HIV – mines, manufacturers – government departments. Inclusion of a HIV/AIDS component into the curriculum of schools (teachers/pupils) Massive campaign – AIDS fact sheets. E.g., transmission modes; Safety of casual contact.

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts The Problem Tree Approach

EFFECTS

FORMS

CAUSES

This could also be a way of looking at the problem of stigma. The roots represent the causes, then stem represents the forms, and the leaves represent the effects.

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

Report 4

HOW DOES THE MEDIA PROMOTE/REDUCE STIGMA IN IT’S MESSAGING AND HOW DOES THIS IN TURN AFFECT SERVICE DELIVERY Convener: Estelle Jobson Contributors: Criselda Kananda; Gerald Shitima (PLHA); Cherylynn O’Brien

The problem: In some instances, media serves to inflate stigma – in pictures of suffering e.g. orphans, stickthin people wasting away – that serves to shock. In some ways, the words media use serve to promote stigma (‘suffering/dying” of AIDS, disease/infection) and constant focus are on negative stories). In other ways, media leaves gaping holes i.e. does not cover important matters and fails completely to share with the public certain aspects of HIV/AIDS work. We need to identify what these gaps/holes are and how the media should be improved about them and also how they should be portrayed. That is the media-to-the-public issue. But we also need to talk about how media works for and within the circle of HIV/AIDS workers. How do we use media for our HIV work – from what media sources do we seek resources? How do we share, publicise, market the HIV work we do? Via which networks, listservs, and what is our preferred kind of media (TV/radio/print/newsletter)? Media sometimes focuses on a given HIV story to fit their agenda. Journalist may wish to push a story into a campaign, e.g. 3 by 5 and if you aren’t on ARV’s, they won’t interview you. The donors/pharmaceuticals may be behind the journalism, so your story may be censored according to their issues. HIV has been commercialized e.g. ads, new publications, selling ad space, a huge ‘industry’. But how much of that goes back to the affected people? Sometimes media expose people without the person’s consent, or sensationalises the story accordingly. Media has a role in disclosure. Media doesn’t always translate correctly when people speak in their mother language/tongue e.g. African language.

Ideas / actions / suggestions / experiences focused upon solutions: Media workers should be trained in HIV, i.e. so they become more informed and report more competently. This could take place within media houses. We need more ‘live’ interviews without donors interceding – e.g. community radio. Uncensored reporting, without the agenda of the donor or pharmaceuticals. We need to see articles before they are published, and screen them to check if the media is representing us correctly. We need more live broadcasts on TV, e.g. practical nutrition guidelines, ‘open pages’ in newspapers to provide vox populi (voice of the people) on HIV questions and answers. We need greater involvement of people with HIV etc. working within media, particularly skilled media workers (not just public) and training media workers.

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts We should be integrating HIV into general wellness in media, so that participants are not isolating 1 topic, but general positive living/health etc. HIV workers should share their info more in media, which may means paying community radio stations to air their recorded programs. Media can help people prepare for disclosure so that public disclosure is handled well – i.e. no more Gugu Dlamini situations! And people can handle the repercussions of their public disclosure. The role of nutrition educations needs to be emphasized, less condoms and more on general nutrition. Mother tongue languages need to be worked with to create African language equivalents of western words, e.g. condom –i-condom? Or another African word which means ‘protect’. We also need African language words for ‘stigma’ too.

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

Report 5

HOW BEST TO EMPOWER PLWHA’s AND THOSE AFFECTED TO OVERCOME/DEAL WITH FEELINGS & PERCEPTIONS OF HELPLESSNESS, IN TERMS OF BEING STIGMATIZED BY OTHERS Convener: Diane Coleman; Heidi-Lee Stockenstrom Contributors: Judy Miller; Roelene Beumer; Felicita Hikuam; Filipe Charles

The problem: How do you deal with the effects of stigmatization of the individual within a community?

Ideas / actions / suggestions / experiences focused upon solutions: Main issues are to facilitating the following: • Empowerment • Sense of belonging • Contributing & expressing – feelings/needs • An environment where you’re encouraged to ask for help. • Assert dignity Desired outcomes: • People’s reaction to being HIV and or being part of a community with people living with HIV and the response is ‘so what’? • An environment where peole are comfortable to ask for help, express their fears and have the faith and courage to accept the response. External challenges: • Building communities where difference is accepted • Economic development – taking responsibility for oneself. • Empower by share information within community through – churches/schools/tribal leaders Internal challenges: • Encourage the expression of feelings – fear/pain/rage and anger/confusion • Health motivation – self value in taking ownership. • Realization that we all belong to communities. • Gain sense of identity of self.

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Report 6

PROGRAM DESIGN, PLANNING & FUNDING: THE CRITERIA THAT WE NEED TO KNOW HIV STATUS BEFORE DELIVERY TO BENEFICIARIES. HOW CAN WE IDENTIFY WITHOUT STIGMATIZING? Convener: Khesiwe Ncube Contributors: Jennifer Mulik; Isobel van Zyl; Beauty Nyirenda; Joy Chigogora; Gerald Shitima (PLHA); Farai Mutibvu

The problem: How can we target people when they are afraid to discuss their status? How can we report that PLWHA benefited from our program? Health centres (HC) will not give out the info because of patient confidentiality. People often do not access programs because of stigma. Even PLWHAs who are benefiting from the program will not discuss the benefits with others because of fear of stigma. How can we start up programs without the role models on acceptance discussing the benefits? Essentially, there is no entry point for rapid start up of programs. Often there is not enough money or time to do sensitization before beginning a program. There are networks at the national level but not at the community level. There are policies on the local level on paper only. In summary the barriers are lack of adequate time, stigma and confidentiality.

Ideas / actions / suggestions / experiences focused upon solutions: • Separate planning from delivery in messaging, often excluding the word “AIDS’. • Need to work via a VCT clinic in order to get a defined target – of PLWHA’s • Gather people to talk about any health topic e.g. diarrhea, nutrition, TB in order to get the attention of people first before you bring up the subject of testing. • Partner with another organization that works in the community. • In Zimbabwe the health centre staff are referring patients to food programs which have an HIV/AIDS component. • In Zimbabwe as well there are existing networks serving the chronically ill. • Village health workers in Zimbabwe are more effective because they are picked by the community itself and paid by the government. • When writing proposals take into account the time required to identify beneficiaries and sensitize the community. • Foster shared confidentiality about HIV status among all service providers. Therefore, NGO’s may gain access to PLWHA to deliver services.

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

Report 7

WHY ARE PEOPLE UNWILLING TO GO FOR VCT (NON-WORKPLACE AREAS & COMMUNITIES) Convener: Believe Dhliwayo Contributors: Peter Ngona; Patricia Ulaya

The problem: The real problems are: • Limited knowledge of the value of VCT. People don’t know the value of VCT and its benefits. • Misconceptions about HIV/AIDS in relation to the mode of transmission. • Separation of VCT centres from the main health facilities has instilled fear of being labeled as HIV positive in community members. • Unavailability, inadequate complementary services like ARV’s programs, standardized HBC approaches, inhibits people from going for VCT. • Fear of being victimized by community members, isolation and rejection.

Ideas / actions / suggestions / experiences focused upon solutions: • Integrating VCT functions into existing health facilities and expand/improve the capacity of such facilities. (staff, equipment, infrastructure). • Intensified treatment literacy, continued education on issues of HIV and AID, to encourage people to go for VCT. • Creation of effective referral systems whose services are sustainable, that being done or ensured through, committed caring, capable, connected and community leadership qualities (from) service providers. • One of the group members stated their personal experience: “I was able to cope because there was a referral system that was in place at the VCT”.

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Report 8

HOW DO WE GET PEOPLE TO COME BACK FOR THEIR (VCT) RESULTS? Convener: Believe Dhliwayo Contributors: Peter Ngona; Patricia Ulaya; Beauty Nyirenda

The problem: • • • •

Lack of confidentiality Ineffective pre-test counseling Unsustainable interventions e.g. (ARV’s) Fear and stigma, especially if they think their result is HIV positive.

Ideas / actions / suggestions / experiences focused upon solutions: • • • •

Ensuring a conducive counseling environment that ensures confidentiality. Effective pre-test counseling Effective education and improvement. One of the group members said “I was confident enough to get my results because the service provider (counselor) was committed and the process I went through was effective initially.” • Ensuring that there are effective, sustainable interventions.

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

Report 9

WHY PEOPLE DO NOT ACCESS FREE VCT AND HEALTH CARE (WORKPLACE) WHEN IT IS AVAILABLE Convener: Linzi Smith Contributors: Margriet Wilkens; Susan Chabala; Pelky Makahane; Kate Greenaway; Patience Hamayanda

The problem: 1. Some employees are not well. Have access to medical aid or facilities, EAP and VCT but do not access help (whatever that help might be). 2. Interpretation or misinterpretation of the HIV policy and the lack of communication of the policy 3. Self stigma issues 4. Lack of confidential space 5. People in leadership roles feel unsure, disempowered or untrained to approach employees or people who are experiencing problems or ill health. 6. Management have no training with regards to dealing with HIV related issues 7. Fear of lack of confidentiality 8. Lack of knowledge of various levels of disclosure – partial disclosure, full disclosure, legislation – right to privacy.

Ideas / actions / suggestions / experiences focused upon solutions: To problem 1: • Empower management to manage employee issues such as absenteeism, reduction in productivity, dismissal for incapacity, etc. • Standard procedures to be followed by all managers within an organization. • Training is essential for both employees and management to be able to deal effectively with these issues. To problem 2: • Development of the policy – ILO (International Labour Organisation), code of good practice, TAG (Technical Assistance Guidelines – Dept. Labour, RSA). • Procedures to be attached to policy • Policy to be effectively communicated to the employees and checked for understanding to ensure that issues of discrimination and confidentiality are understood. Policy is a statement of intent with regards to what the organization is willing to do for the employees in terms of the education program, VCT and treatment and care. • Ensure that misconceptions are corrected if identified. • A project plan attached to ensure that the intents stated in the policy are carried out. To problem 3: • Effective counseling – accessing this counseling is still a problem – but as the program reduces fear – accessing of counseling should increase. • Ensure that counselors are well trained. To problem 4: • Huge problem with very little in the way of solutions. • Need budget, space, advocacy to improve these issues. • Leadership need to admit that this is a problem.

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

To problem 5 and 6: • People in leadership roles feel unsure, disempowered or untrained to approach employees or people who are experiencing problems or ill health. • Management have no training with regards to dealing with HIV related issues. • This is about training. Ensure that training service providers are accredited or offer quality services and don’t just take the cheapest quote. Screen various service providers for quality. • Introduction of HIV related program KPI’s (Key Performance Indicators) as part of performance appraisals. • Leadership to share info with regards to problem solving. To problem 7 – fear of lack of confidentiality: • Well communicated policy will go a long way to reducing this fear. Leadership to ensure that they comply with confidentiality. To problem no 8: • Lack of knowledge of various levels of disclosure – partial disclosure, full disclosure, legislation – right to privacy. • Effective Training and counseling

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Report 10

PRACTICAL STRATEGIES TO OVERCOME STIGMA IN HEALTH CARE SETTINGS Convener: Shaun Mellors; Linzi Smith Contributors: Joy Chigogora; Kate Greenaway; Isobel van Zyl

The problem: 1. 2. 3. 4.

Confidentiality/shared confidentiality within family members or community Attitudes of Health care workers – Payment (over worked and underpaid). Skills of health care workers Context or reality of HCW’s situation (no equipment, short staffed, at risk, of becoming infected) 5. Misperception about being justified re bad attitude HCW = Health Care Worker

Ideas / actions / suggestions / experiences focused upon solutions: To problem 1: Doctors and nurses have to maintain patient confidentiality – family members are expected to look after the patient without knowing the diagnosis. Shared treatment and care strategies with caregivers. Encourage more effective care and support strategies within the family or community with regards to disclosure. To problem 2: A difference in ideas was noted: One member of the group felt that nurses were underpaid, misunderstood, and this needed to be investigated – why do nurses have bad attitudes. The other member felt that circumstances did not justify poor attitudes Attitudes: • Create discussion forums/opportunities for user / provider interface • Sensitization – Overcome the doctor’s god-like syndrome, so that the interaction is a two-way dialogue process between the health care provider and the health care user. • Accountability – checks and balances • Consequences for bad service delivery both attitudinal and delivery of treatment – disciplinary action • Code of conduct for the provider to be guided by (e.g Batho Pele), as well as the user to be guided by the code of conduct (the service that should be provided). Health rights. • Create discussion forums and opportunities for user/provider interface. • Selection criteria for entry into the health care professions – screening process. To problem no 3: Skill and capacity of health care workers. • Integrate comprehensive training at nursing colleges and medical schools • Include attitudinal training in the basic training of doctors and nurses. • Ongoing training through CPD (continual professional development) • Leadership advocacy for ongoing training • Inaccessibility to training for various reasons – creative ways to deliver training and skill development. E.g. Distance learning, running courses one day per week over an extended period of time,

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts To problem no. 4: Context or reality of Health Care Worker’s situation (no equipment, short staffed, at risk, of becoming infected) • No medicines, no gloves, etc – high patient load, etc. – Poor ordering systems in place, poor delivery systems – improve internal systems, develop advocacy campaigns to improve systems and health care infrastructure. • Perception that health care workers are under paid – work longer hours than anyone else, work harder than anyone else prevails amongst health care workers and some members of the public. Host workshops to assist with unpacking these perceptions, to understand where these perceptions come from and what to do about them. To problem no. 5: Health care workers have misperceptions about being justified re their bad attitudes. As above – workshops to assist to unpack these issues

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

Report 11

HOW DO WE DEAL WITH FAMILY AND COMMUNITY REACTIONS TO CHILDREN(HIV+, KNOWN) WHOSE PARENTS HAVE DIED? Convener: Chipo Chiiya Contributors: Angella Rubarema; Priscilla Kekana; Diana Teffo; Susan Rammekwa; Criselda Kananda

The problem: Communities and families isolate these children – reject them. Communities and families do not want to share resources with these children. Children are hidden or removed and taken to the village whilst other relatives occupies. Children are deprived/denied of their rights e.g. - right to education - right to medical care - right to choose - inheritance Labeling of these children by families and communities, language and stigma – language used to describe them. Children used to gain extra income. The community blaming the children for ‘killing their parents’. Communities link AIDS to prostitution, and say the children were prostitutes.

Ideas / actions / suggestions / experiences focused upon solutions: Sensitizing the communities about children issues (identifying which memes, e.g., green and blues etc). Meeting with community leaders, for them to influence their communities to change attitude on children. E.g. teachers, counselors and church leaders. Understand, respect and explore children’s experiences by taking to them in order for them to voice out their feelings. Formation of children support groups. Breaking the ‘sex ice’ – since countries linked AIDS to sex, hence families feel ashamed to talk about issues surrounding sex to children. Sensitize the communities and children about children’s rights through schools as well. Involve youths in the dissemination of information.

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

Report 12

HOW DO WE TALK TO FAMILY MEMBERS WHO ARE LIKELY TO BE HIV+, WITHOUT STIGMATISING THEM? Convener: Maria Tokwani Contributors: Believe Dhliwayo; Diane Coleman; Patience Hamayanda; Beauty Nyirenda

The problem: HIV-positive relatives fear the response they might get from family members when they disclose their status. Self-stigma – self unworthy-ness: A family member who is HIV-positive might have selfstigmatization, hence feelings of low self worth. This hinders them in talking about their status. Rescuer – persecution. Grapevine – within the family members: Gossip within family members without addressing the problem squarely might hinder disclosure or lead to stigma. Inability to deny your status quo. People not ready to talk about HIV or AIDS. Extended family: Disclosing to a sister or brother who is married means the news will be known by the wife/husband’s families too.

Ideas / actions / suggestions / experiences focused upon solutions: Bring somebody from outside to talk to them. De-role – get into their shoes – empathize with them. Find out how they feel about their illness. Trying to find answers from them. For example, “You have been taking this medicine for sometime, why can’t we try somewhere like the hospital”. Family dialogue on matters and will be easy to talk about HIV/AIDS: Create an enabling environment where these issues could be discussed in a more harmonious (non-stigmatizing) atmosphere. Examples: at braais, family gatherings, where issues could be discussed, including HIV and AIDS.

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Report 13

REPAIRING (STIGMA-RELATED) DAMAGE CAUSED BY PREVIOUS PROGRAM APPROACHES Example: Previous efforts caused people to link our program/product to HIV/AIDS. Now I can’t get anyone to volunteer to help, even although we changed our approach. Convener: Isobel van Zyl Contributers: Roelene Beumer; Beauty Nyirenda

The problem: No trust between employer and employee about the confidentiality of test being done previously although confidentiality was kept. Employee did not feel comfortable in going for test but felt forced to go. No programs in place for people who tested positive. Too little knowledge was given to them about HIV before the test. Because trust was broken people don’t want to participate in any health program.

Ideas / actions / suggestions / experiences focused upon solutions: Desires outcome is to get the trust back to get people to be willing to participate in wellness program. How? • Write a wellness program and present it to management (HIV only mentioned as a part of the program). • Call on staff representatives, present them with your program to get their ‘buy’ in (make it fly). • Staff representative to go on training i.e. Positive Living training. • Incentive and newsletter – incentive (not money) for depot. Who does the best positive living program? • Start with practical visual (things) training first, like home remedies and gardens. • Seeing is believing. • Get trust back and an environment of caring. • Create a sense of belonging: o Live the talk o Allow people to attend training sessions o Refer employees with illness or problems for help. Don’t discipline first for poor work performance.

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Report 14

EMPOWERING COMMUNITIES TO IDENTIFY AND DEAL WITH STIGMA Convener: Felicitia Hikuam Contributers: Susan Chabala; Filipe Charles; Heidi-Lee Stockenstrom; Warnow Elm Isaac; Pelky Makahane

The problem: How do you empower communities to identify stigma as a problem and find solutions themselves? Over-arching theme: Integrate HIV into overall wellness. Do not talk HIV only and do not isolate the issue. Communities will be more perceptive if the issue is positive living or overall wellness. Issue 1: How do we facilitate the process of communities identifying stigma and discrimination and finding solutions: Issue 2: Identifying key people to access communities and facilitate empowerment. Issue 3: Difficulty discussing with communities certain subjects that are taboo or having discussions with the general community (group). Issue 4: Addressing how rural health care workers and churches contribute to stigma. Also addressing how rural health care workers are ‘used to’ stigmatize.

Ideas / actions / suggestions / experiences focused upon solutions: Issue 1: Be aware of the meme you are dealing with Involve communities from the beginning. Do not introduce your ideology and terminology to communities who might be ignorant of stigmatization or not be aware of the fact that they are stigmatizing. I.e start where they are... Identify key people in the community including gatekeepers. Use positive health as the entry-point not HIV or stigma Use existing structures e.g. churches, schools, teachers, traditional healers to identify key individuals as well as to facilitate access into the communities Respect local cultures, customs and traditional structures. Use edutainment (community drama, song etc.) to break monotony of having serious meetings and raise interest Note: Some communities are ignorant of the fact of what stigma is and whether they are discriminating. The terminology might not exist and it may be difficult to translate into local vernaculars. In which case you: Change the way you look at what the problem is in order to make the problem not a problem anymore. I.e., if the community is ignorant of HIV-related stigma, do not isolate the issue and make them aware of it, rather address it under the umbrella of ubuntu or community support.

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts Issue 2: Approach teachers, community leaders, traditional healers etc. as respected community members. Use public health / general wellness as the entry point not HIV or stigma Build them up as spokespeople who will be featured in community based media speaking on and advocating for positive health. Issue 3: Difficulty discussing with communities certain subjects that are taboo or having discussions with the general community (group): Solution: Convene separate meetings for specific homogenous groups Raise issues in a respectful manner Issue 4: Addressing how rural health care workers and churches contribute to stigma. Also addressing how rural health care workers are ‘used to’ stigmatize Ensure policies and guidelines are made clear (in the case of lack of confidentiality). Use trainings etc. if necessary to disseminate and communicate the policies and consequences in the event of a breach Integrate health care workers and the services and do not isolate HIV and have clients served separately Facilitate trainings and discussions with church leaders to discuss their perceptions and ‘teachings’ on how to deal with people living with HIV/AIDS.

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Report 15

EMPOWERMENT/SELF-STIGMA: WHAT WILL UNDO THE (SELF-STIGMA) FEELINGS OF LOW WORTH, SELF-HATE, SELF-JUDGEMENT, AND FEELING SEPARATE? Convener : Judy Miller Contributers: Felicita Hikuam; Criselda Kananda; Heidi-Lee Stockenstrom; Kate Greenaway; Estelle Jobson; Gerald Shitima (PLHA); Jennifer Mulik; Patricia Ulaya

The problem: Self stigma: The problem of self-stigma is characterized by isolation. A wall has been created and within this contained space there is no movement. The thinking is limited and filled with ideas of right and wrong. There is shame and secrecy. There is fear of death and fear of loss. The psychological stance of those involved in self-stigma is one of withdrawal and fear. How can we empower and undo the feelings of self-worth, self-hate, self-judgment, and feeling separate?

Ideas / actions / suggestions / experiences focused upon solutions: The fear needs to be met with faith. The self-judgment needs to be met with self-forgiveness. The hopelessness met with hope. The church could be very helpful in assisting parishioners to gain faith and hope, and to learn self-forgiveness. We felt that to help people gain the type of unconditional self-love that they need they might be encouraged to ‘see themselves through the eyes of Jesus, Mohammed, their source’. The first step in healing is to know the situation exactly as it is, to ‘as is’ what is happening with courage and honesty. The walls that create separation must be broken down and movement must occur – the movement of expressing your feelings, your fears, your grievances, and the movement towards knowledge, support, and services. It is very important to take actions with the new knowledge. For example: If you know that good nutrition will help your health, then plant a garden. Knowledge gives power. The solution will always involve communication and connection versus isolation and separation. For example: There was a young man who was living with HIV. He was healthy, and an active member of the community, promoting AIDS awareness and spreading positive living information. One day he didn’t appear, and after several weeks of absence his supervisor went to his house to see what was wrong. She found him sick and depressed. She recognized that he had TB and took him for treatment. He thought he had full-blown AIDS, and that he would be seen as a fraud, a failure, and rejected by his community, and that he would die. He was filled with self-judgment and had forgotten what he knew about TB. When he recovered he had a vivid memory of what happens when you self-stigmatize.

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

Report 16

WHAT CAN PEOPLE LIVING WITH HIV OR AIDS DO OR SAY (OR NOT DO OR SAY) IN PULIC FORUMS, TO HELP REDUCE STIGMA? Convener: Farai R Mutibvu Contributers: Khesiwe Ncube; Peter Ng’ona; Estelle Jobson; Gerald Chitima

The problem: 1. HIV-positive people portraying their status as a horrible situation, as people severely suffering, pitying themselves and implying that they are only standing up to seek sympathy and assistance from people. 2. Reflecting self-stigma. 3. Misrepresentation by media of issues discussed in a forum. 4. Portraying their status in such a way that results in them being isolated and withdrawing from usual life and seeing other people in a different light, seeing others as ‘them’ and oneself as ‘us’ apart.

Ideas / actions / suggestions / experiences focused upon solutions: 1. PLWHA should play a leading role alongside others in educating the public on how to handle disclosure. 2. Avoidance of behaviour that results in a negative reaction from other people. 3. They should talk about the advantage of getting tested and knowing one’s status and further on utilization of services available to people with their condition. 4. Concentrate on positive healthy living rather than negatives of the diseases and discussing how they got HIV. 5. Strengthen the sharing of information at support groups and ensure some form of uniformity on how to portray/present oneself/HIV status in order to avoid selfstigmatization and also to share experiences on stigma and how to deal with it. 6. Incorporate and take advantage of prominent persons (e.g., media figures) with the same status. 7. Ensure they inform media on the need for their consent before publication of speeches to public. 8. Avoid discussing issues to public/media which one is not fully conversant with, and if necessary, avoid speaking publicly in forums at all. 9. Do not be forced to talk. Disclosure should be voluntary. 10. Avoid negative talk like ‘aids sufferers’, ‘aids victims’ or ‘aids orphans’ and may be use words like ‘people with a confirmed status’. 11. Avoid misrepresentation for financial/material gain. 12. Should not be afraid to be role models. 13. Should encourage people with a confirmed status to take charge of their own health rather than seeking medication when one is still healthy and not necessarily needing it. 14. Live and tell of one’s way of living as before. Do the usual things - do not isolate oneself through withdrawal from your normal way of life. Do not stop sporting and other activities that one has been doing before.

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Report 17

MEDIA : HOW CAN WE ‘USE’ THE PHENOMENA OF ‘STIGMA’ TO MOTIVATE CHANGE (REGARDING DONORS)? Convenor : Heidi-Lee Stockenstrom Contributors : Estelle Jobson; Gerald Shitima (PLHA)

The problem: 1. Donors don’t understand reality on ground level. 2. ‘Glory’ – Donor name linked to specific programs and budgets i.e. meeting social responsibility. 3. Media – need to sensationalize 4. There is a financial dependency on donor, and there is the risk of losing their support. 5. Measurement – when do you get to the point where you accept that the result is not effective. 6. Having to meet specific criteria when the reality on the ground makes this impossible e.g. finding the target population. 7. Territorialism – of funders/donors of a particular population and lack of an integrated approach. 8. Empowerment of local personnel for their contextual knowledge and future roles – this is starting to happen. 9. You can’t speak out – media is state controlled (Zambia) 10. Government not delivering - But because of environment. 11. Concerns raised: - 1 project funded by 4 donors; same proposal sent through. - Zambia … what is happening is most funds from donor has to go through government. - Local person who is implementing says ‘we’ve been doing this here – and lying – through mis-transaction to ‘tell’ donor what they want to hear.

Ideas / actions / suggestions / experiences focused upon solutions: On the ground staff – 1. NGO’s and organizations need to put down as their criteria – empowerment of local staff. 2. Start with ‘African Media’ – invite journalists to witness the result of lack of co-operation and integration of projects sponsored by different donors. NB recognize it as a means to an end so push the suffering, push the victims, use the ‘stigma’. Submit these findings with project analysis reports. 3. As benefactors be aware of power relationships between donors, and be conscious of being a ‘victim’ and accepting unreasonable deliverables. 4. ‘Play’ donor against each other through media, find examples where more integration has occurred. 5. Translation of project analysis and proposals are translated and given to tribal leaders in affected area – get participants to report to tribal leaders. 6. The use of a headman/chief within a community to sign off on hours worked/deliverance.

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Report 18

HOW DO WE PROVIDE HOME BASED CARE (HBC) WITHOUT STIGMATIZING OR DISCRIMINATING AGAINST THE PATIENTS? Convener: Maria Tokwani Contributors: Jennifer Mulik; Gerald Shitima (PLHA); Farai Mutibvu

The problem (general): Secondary and Primary Caregivers, the community at large and patients themselves stigmatize the patient while performing HBC(home-based care). (Village Health Workers are trained per national guidelines in Zimbabwe. There are two types of caregivers: secondary—appointed by villagers, are literate, they in turn train the primary caregivers who are usually family members.) Stigma has different causes on different levels of the provision of HBC. The levels we will discuss are secondary caregivers, primary caregivers, the patient, and the community: The problem 1: Secondary Caregivers Secondary caregivers—those without personal experience often have fear of the patient and will not want to touch the patient, share food, etc. This is exacerbated by the lack of supplies for universal precautions gloves, soap, aprons etc. Sometimes they even label the patients as a prostitute. Often these caregivers visit wealthy households in order to get food, clothing etc. Therefore, the poor do not get the same services. Thus, these secondary caregivers discriminate against the poor patients. These secondary caregivers often do not honor confidentiality of the patient thus contributing to the stigma in the community. When these secondary caregivers get burned out; then they abuse their patients causing them to feel stigma or even become self-stigmatizing (see patient--self stigma). Solutions 1: Secondary Caregivers • • • • • • • •

To avoid the discrimination against poor families HBC volunteers should receive incentives e.g. food. Provide supplies for universal precautions gloves, aprons, detergents, etc. include a replenishment plan Volunteer roster to break up the day/times so the caregivers will not experience burnout. Oversight by supervisors of secondary caregivers checking on confidentiality, cleaning techniques, etc. Link the health center with the caregivers Health Center Staff in Zimbabwe are responsible to oversee the HBC volunteers: It is part of their job duties. Integrate other health and sanitation services into HBC volunteers scope of work Refresher training

The problem 2: Primary Caregivers Primary caregivers - Usually a family member. If the patient had been a problem in the family and did not contribute to the family in the past financially then the family gets angry and often brings up, making the patient feel guilty. If the family is poor they resent taking care of the patient. Distant relatives are often forced to take care of patients and then do not treat them well. Often they experience burnout as well. The burnout can lead to mistreatment of the

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts patient. For example: will not bathe them regularly, cook for them, or even listen to what the patient wants/needs, this contributes to the isolation of the patient. They feel like the patient becomes a bother and then the patient feels a lack of self worth. Solutions 2: Primary Caregivers • Improve the service provision of the secondary caregivers, so that the primary caregivers do not get burned out. In Zimbabwe this is part of the goal of the program: “To relieve those who are more stretched than the others.” • More than one family member can be trained in taking care of the patient not just the spouse but the children and especially men should be involved • Make sure they have enough protective clothing and supplies to take care of the patient e.g. diapers • Other stakeholders can support the patient, contributing to the household with blankets, food, soap etc. this is important because the family often becomes more vulnerable • Refresher training The problem 3: The Patient Patient—Self stigma: The patient feels shame, bitterness, anger, has suicidal thoughts and fear, and these hinder them from accessing treatment. They feel guilt for burdening their relatives. The stigma builds when the secondary and primary caregivers experience burnout. Solutions 3: The Patient • Empower the patient through education: positive living skills e.g. nutrition • Educate the patient about their rights and responsibilities • Psychosocial support from community, secondary or primary caregivers, • Set up effective support groups The problem 4: The Community Community—When they see the HBC worker visit the household there is a lot of gossiping. This may result in isolation of the whole family from the decision making of the community. Children are sometimes forbidden from visiting a house where the HBC workers visit. Community members lose respect for the household especially when the household is now headed by children. There is sometimes even theft from the household. Solutions 4: The Community • HBC concept should be explained to the community • Sensitize the community to support HBC activities through cultural normal practices • Strengthen the community practices which promote community solidarity/spirit • Approach and garner the support of local community leaders including traditional healers, church, political

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Report 19

WHAT IS THE ROLE OF THE LANGUAGE USED BY TRADITIONAL HEALERS AND HEALTH CARE WORKERS IN FURTHER PERPETUATING STIGMA? Convenor : Criselda Kananda Contributors : Isobel van Zyl; Sedi Ngubane; Margriet Wilkens; Warnow Isaac

The problem: Language used: in traditional language healing/curing is seen as ‘ukulapha’ (Zulu) – ‘curing from inside’. In a traditional context, after of a consultation and healing process, it is understood that the patient will never suffer from the same sickness again after being treated. In conventional (western) treatment takes care of symptoms and sometimes not the source of the problem. Natural healers cannot in most instances describe how the remedy works and explain the process of healing but is a calling from the ancestors. Traditional healing is spiritually based. Traditional medicine is more psychological whereas western medicine is more physiological treatment can be explained exactly. For example, how it affects e.g. your organs. Therefore, traditional medicine becomes stigmatized as being ‘inferior’.

Ideas / actions / suggestions / experiences focused upon solutions: Traditional and western healers need to work together in understanding each other’s world. They all need to let go of intellectual arrogance on both sides and merge the two worlds. Synergies must be investigated and clearly spelt out – currently anything traditional and natural is still seen as backwards, unconventional, wrong, thereby perpetuating the stigma! Understand how the ‘other’ world works and try to gain trust of each other’s world through dialogue, engaging and workshops. When the public sees these two worlds supporting each other, they attach less stigma particularly to the traditional world.

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Report 20

WHAT ROLE CAN THE YOUTH PLAY IN ADDRESSING (REDUCING) STIGMATIZATION WITHIN FAMILIES AND COMMUNITIES? Convener: Susan Rammekwa Contributors : Angella Rubarema; Pelky Makahane; Gerald Shitima (PLHA)

The problem: Lack of communications and understanding between the youth and adults. The youth are easily influenced by their peers and easily copy or practice attitudes of the communities or families. For example, if live in a community/family which stigmatizes – they would also do it. The youth are a vulnerable group since they are sexually active. They are a group which learns through experimentation: Practice what is being taught whether right or wrong. Technology has taken up most of their time e.g. internet, TV games, DVD’s etc. Have fear of the unknown: either do not want to test or if positive, not likely to disclose.

Ideas / actions / suggestions / experiences focused upon solutions: Establish how much they know about HIV and AIDS facts & issues affecting them (survey). Channel their energy through involvement in activities that encourage positive living/wellness i.e. sports, drama, arts. Structured training programs; focus of which would be on life skills programs, health issues, stigmatization and it’s impact etc. Youth role models who would offer a variety of programs/services i.e. career guidance, counseling, life kills within communities and at schools (integrated approach). Involve them in projects such as food gardening, as a way to encourage healthy eating. Programs and discussion sessions that would address the values of our culture which would emphasize ‘ubuntu’. These would involve the youth – and adults – and be community based. These would take the form of dialogues and debates. These to involve youth and adults (dialogues/debates). Empowerment of youth = influence families and communities positively.

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

Report 21

STIGMA & GENDER : ARE WOMEN MORE STIGMATIZED THAN MEN? IF SO, WHY? Convenor: Chipo Chiiya Contributors : Gerald Shitima (PLHA); Diane Coleman; Priscilla Kekana; Diana Teffo; Peter Ng’ona

The problem: Culture – e.g. women are not allowed to talk. Separation of gender groups in gatherings, e.g. churches Women are seen as vulnerable. Mentality of hearing a man’s voice rather than a woman’s – it’s all about ‘power’. AIDS – Prostitution – a woman who is HIV-positive is going to be called a prostitute. Blaming of women for bringing HIV into the home. Name-calling of women (community calling names). Secondary stigma – men blaming women for the status of other family members e.g. daughter – why did you not prevent this? Community labeling them (women) as victims. There is abuse of rights by the community – e.g. the right to have sex if living with HIV. The right to have children is suppressed if HIV-positive.

Ideas / actions / suggestions / experiences focused upon solutions: Men should understand that what they are doing is bad. Have to really understand issues and stigma. Women have to know their rights and be honest with men. Introduce programs where cultural issues could be discussed in relation to HIV stigma. Men and women have dialogue with each other though men are supposed to practice assertiveness. Women are supposed to break the silence – talk about the issues that they go through. Personally women need to be empowered to say things that they are supposed to say, to which group age, education, need to be empowered. Programs to include issues of rights – that human rights are for every one whether PLHA or woman, etc.

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

Report 22

HOW DO WE MONITOR AND EVALUATE THE SUCCESS OF STIGMA-REDUCTION INTERVENTIONS? Convener: Kate Greenaway Contributors: Susan Chabala; Believe Dhliwayo; Shaun Mellors; Joy Chigogora; Patience Hamayanda; Khesiwe Ncube; Patricia Ulaya; Felipe Charles; Felicita Hikuam; Beauty Nyirenda; Peter Ng’ona

The problem: 1. We have not monitored or evaluated the effect of Stigma Reduction (SR) activities until now, because: Have not been running SR activities Hasn’t been a priority We don’t know how to do it SR has been absorbed into other strategies 2. Was the Break the Silence campaign evaluated? 3. This has been done with Disability, Mental Health, other sectors – can we learn from them? 4. Measuring Stigma Reduction is challenging because Hasn’t been done before in this sector Multifaceted, multi-pronged, different for different sub-groups How do you evaluate attitude change? People will say what they think is PC, or what you want to hear? We need multiple tools to look at different aspects and cater for the various dynamics Does creating special ‘seats’ or representational capacity even further stigmatize the issue? Or does that ensure that their views are represented? Perhaps it’s a normal part of the evolution of mainstreaming HIV/AIDS, which will serve a natural life and when it’s no longer a useful process, will be abandoned. Is HIV stigma special or different from other kinds of stigma? Is HIV stigma higher or worse? Or is it just because we haven’t dealt with it? SR is a process so tools need to be devised that can capture changes over time

Ideas / actions / suggestions / experiences focused upon solutions: We can understand Stigma Reduction more clearly though: 1. we need a set of generic indicators, with specialty indicators added on 2. developing tools that can be tailored to our specific environment: community, workplace, health sector, church, etc.; specialists from those individual settings should be involved in developing their tools 3. using a range of methods to collect data (stats from medical aid companies, focus group discussions, surveys), 4. it is more likely that we can measure feelings, attitudes and beliefs that actions or behaviors (people will lie)

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts Indicators might include: 1. Demonstration of commitment among leaders (they are approachable and knowledgeable, can talk openly about HIV) 2. Number of people choosing to voluntarily disclose their status in their workplace, community etc. 3. Program uptake has improved: VCT, accessing care/treatment/support (though this is confounded by the client’s perception of the service itself) 4. Legislation / workplace policies / Patient’s Charter / Sector Policies / Codes of Conduct developed and implemented indicates increased appreciation of the issue at higher levels NB: Measure not only that the document has been developed/ratified, but: number of people who know about it people availing themselves of its protection/service 5. Survey questions could include: Do you know your status? Have you disclosed your results to anyone? What are the chances of a colleague infecting another colleague at work? (scale of 1-5 or ‘Not-at-all --- Very Likely’ scale) Further questions should be developed to elicit fears or beliefs that drive stigma, on a 5 point scale.

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

Report 23

SENIOR STAFF VERSUS JUNIOR STAFF: ARE THERE DIFFERENCES REGARDING SELF-STIGMATIZING? IF SO, HOW DO WE REACH THEM? TRAIN SEPARATELY Convener: Kate Greenaway Contributors: Chipo Chiiya; Joy Chigogora; Susan Chabala; Maria Tokwani; Beauty Nyirenda; Patience Hamayanda

The problem: Can we train senior staff and junior staff together or do they need different approaches? Is their experience of HIV and stigma different? On one hand….

On the other hand,

Managers and subordinates might not feel comfortable to be trained together – it might stifle their inputs (in both directions).

Being together would contribute to their shared understanding of the broader experience.

Managers are in a better position to find solutions to stigma, especially if they influence policy devt.

Managers need to be informed about the junior staff experience in order to find the right solutions.

Head Office managers and the hierarchy would not allow training to be mixed, where participation is required of them.

Field staff tend to work closely, like a family, so can be trained together.

Managers/senior staff are less likely to disclose because they don’t need help – they are self-sufficient and can sort themselves out.

Junior staff are more likely to overcome fear of stigma because they need help.

Senior managers think they know everything already

Junior staff recognize that they have knowledge gaps and will seek training and information

Ideas / actions / suggestions / experiences focused upon solutions: We should include the question of whether training should be offered separately (to managers and junior staff) as an indicator of stigma reduction in the workplace. Different trainings for senior and junior staff could be developed, with case studies designed deliberately for each group, targeted approaches and handpicked facilitators. Facilitators/ trainers should try to get a feel for how willing the staff are to mix for training, and run their trainings according to what they find. Where we have to separate groups, it is useful to try to bring in the perspective of the other group, where possible.

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

When organizing small group work, it’s useful to try to get a sense of whether small group work should be sorted out according to status or should self-select. Activists/animators must be matched to the group; the concept of ‘peer education’ is crucial. Regardless of the audience, activists/speakers must be CAREFULLY chosen, prepared and paid well enough to deliver what we ask them to do. Team-building across levels of the organization is really important. Issues of confidentiality must be addressed at trainings.

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

Report 24

HOW DOES SYMPATHY VERSUS ACKNOWLEDGING PERSONAL RESPONSIBILITY FOR CHOICES MADE, IMPACT UPON STIGMA (REGARDING NOT ACCESSING SERVICES)? Convenor : Criselda Kananda Contributors : Sedi Ngubane; Pelky Makahane; Margriet Wilkens; Peter Ng’ona; Jennifer Mulik; Linzi Smith; Susan Rammekwa; Patricia Ulaya; Khesiwe Ncube

The problem: Lack of productivity – management not following procedure and becomes sympathetic towards the unproductive employee. How do we ensure that management follows procedure. Not accessing company benefits. Preferential treatments, learned helplessness – encourages secondary gain. Procedure and policies being national or company should be clearly communicated, incentivise.

Ideas / actions / suggestions / experiences focused upon solutions: The ‘Tough Love’ method – manage the problem and not the person. Especially in the workplace, an employee will stay at home (sick) for a long time. The manager may suspect HIV involvement, and therefore not stick to procedures. The same applies in other situations, where people avoid confronting the problems, because they do not want to raise the ‘AIDS’ issue. Educate about rights and responsibility concurrently. Encourage individuals to be responsible – Vukuzenzele initiative (started by the SA President, which focuses upon finding out what your rights are, what jobs are available, etc. I.e., ‘Wake Up and Take Action Yourself’). Policies and procedures that cover how illness and incapacitation are dealt with, are in place and adhered to and communicated. Make sure all personnel are aware that these policies apply to all ‘dread’ illnesses, not only HIV. Incentivise awareness of the above. Different approaches need to be taken with different sectors of personnel, to make sure that the form of communication (and incentives) are appropriate.

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

Report 25

HOW DOES THE ATTITUDES (E.G. EGO; SELFRIGHTEOUSNESS) OF CARE PROVIDERS STAFF IMPACT UPON STIGMA? WHICH IS THE BIGGER PROBLEM? Convener: Roelene Beumer Contributors : Isobel van Zyl; Filipe Charles; Heidi-Lee Stockenstrom

The problem: Are we really listening to each other? Or are we thinking ‘something else’ (such as what we want to say next) – are we just preaching? So does that limit what people are sharing? Personalities – some have a problem to listen. Appropriate environment where people can talk – encourage people to talk. The ways and means of communication is different. Community is different. Community also looks for answers and has the expectations for solutions and that you have all the answers. Past – we’re been identifying problems and giving solutions without input – and now we need to change this. You sometimes want to make the decisions for people, when they don’t allow you to help. Example: You can’t give them ARVs until they have agreed to be tested. Sometimes the demand is for something that is NOT possible from a policy point of view. Risk of disappointment (e.g., sick leave is finished). We don’t allow people to come forward because: We don’t listen We don’t show caring consistently due to frustration Body language and choice of words. (Example: ‘What’s wrong?’ instead of ‘How are you?’)

Ideas / actions / suggestions / experiences focused upon solutions: Make sure this is what you want to do – skill/personality/willingness. Commitment and honesty with yourself and those you are dealing with. Get off your throne and learn the language of beige, purple and blue memes. Get to know the community, get to know the people, get to now the differences. E.g. in some cultures a man cannot address a woman and visa versa. Share knowledge, probe the right questions to lead the people to find their own solutions. Policy document written from the employees point of view in simple straightforward language, and translated into specific language for that area e.g. don’t use words like employer/employee. You can use self-righteousness up but not ‘down’.

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

Report 26

IF STIGMA IS CHARACTERIZED BY ISOLATION AND FEAR, THEN: WHAT IS THE FIRST STEP TO CRACK THIS? WHO MUST DO THIS FIRST STEP? Convener – Judy Miller Contributors – Roelene Beumer; Pelky Makahane

The problem: The problem of stigma, characterized by isolation and fear is based on a set of beliefs held by the community and the PLWHA. There is often the perception that a sin was committed and punishment is deserved. It is linked with both shame and death and the sinner is isolated from the community.

Ideas / actions / suggestions / experiences focused upon solutions: The outcome that we want is the creation of an environment where disclosure can happen without negative consequences. We need to take steps to impact the belief structure so that people are responding with their HEARTS instead\d of finger-pointing and isolating. The way that the blue meme is playing out here must be challenged for change to occur. The solution will create a change in attitude towards the sick person: It is good to ask “How would Jesus treat a sick person?” How can we create a sense of identification between the stigmatizer and the stigmatized person. Because the response of stigmatization is based on an internal and emotional response this is where the change must occur. We must effect an understanding that you are no different from the person, and that a virus need not create a fundamental separation. How to move the people of the community from ostrasizing to empathizing is the key. David told us that in their work they had “I have AIDS” tee shirts printed and asked the delegates to walk around the city wearing these tee shirts and see if they experienced discrimination. We know that everybody has known the experience of discrimination for one reason or another – race, gender, sexual orientation etc, etc. The experience of discrimination is rejection. We want to create a training that reminds the participants what if feels like to be rejected, so that they can empathise with others who get stigmatised. We think that this experience will be very powerful in moving people from judgment to empathy. To remember the pain of rejection will help them to change their behavior in relation to others. We felt that the most effective place to bring this into play would be in schools and the churches. We think that the youth would be most amenable to this type of training and we feel that the churches are a very appropriate venue for this type of training. We plan to create a training manual on ‘rejection’ and Rolene will try it on the community of Landolozi. Pelky will bring it to the Sunday school teachers at his church. We hope that this will be an effective tool in combating the fear and isolation of stigma.

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

Report 27

WHAT CAN SERVICE PROVIDERS DO OR SAY OR NOT DO/ SAY IN PUBLIC FORUMS/INITIATIVES TO HELP REDUCE STIGMA. Convener: Believe Dhliwayo. Contributor: Priscilla Kekana; Isaac Warnow; Maria Tokwani; Angella Rubarema; Susan Rammekwa. Definition: Service Providers in this case refer more or less to the following groupings; Health professionals, Medical Doctors, Nurses, Programs people in FBOs, ASOs, NGOs, Government Departments, etc.

The Problem: Service Providers impose services to beneficiaries e.g. without taking into cognizance the needs of the service beneficiaries. Service providers develop the agenda of the problem of the service beneficiaries without them; they implement for them or dictate for them how to go around addressing the assumed problem affecting the service consumers. Health providers for instance prescribe, treatment after diagnosis to PLWHA or other people living with life threatening illness without negotiating with them how the treatment should be done. “The we/I know-it-all attitudes.” When organizing running programs at conferences In Zimbabwe for instance sessions were chaired and run by Doctors right through the conference at their first ever conference in 2004 and PLWHA felt out of place as a result. Donor driven initiatives programs developed to suit the needs of the funders rather that of beneficiaries. Too technical and scientific terminology / language only properly understood by Technical people at conferences. “Group Arrogance” “Same class, same level of interaction” -----Discriminatory behavior at conferences campings of Drs or programs people at conferences and workshops. Stigmatizing terminology or language like ‘Sufferers, Victims, or PWAs, this mostly being promoted by the media. Pointing fingers or calling names or insulting patients in hospitals verbally or using non-verbal signs whispering in corridors about patients. (They can even afford to make excuses of using the language because writing People Living With HIV or AIDS or using an acronym PLWHA seems long). Tokenistic involvement of PLWHA in initiatives this being aimed at getting a good face from sympathizers, donors or prospective funders. Pretending, Acting e.g. smiling and love not coming from within. Laissez-faire approach of doing things. “Not being in a hurry.” Slowly but surely.

Ideas / actions / suggestions / experiences focused upon solutions: There is need, a very strong requirement by Service providers to seriously do what they say “walk the talk.’ Role modeling in terms of the best way of relating to service beneficiaries. There is need to shift Service consumers to have them as service providers through empowerment, to avoid the rescuer from being persecuted. Train PLWHA to have them as service providers as this restores in them dignity acceptance and increases motivation.

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts Service Providers should seek training or should be trained on issues they consider obvious ‘The Ignorance of the Educated’ - taking important things for granted. From Greater Involvement Of People living with HIV to Meaningful Involvement of people living with HIV. Ongoing sustained trainings aimed towards changing Knowledge Attitude and Behavior. There is need of ensuring that PEP policies are in place and properly understood. Priority number one should be identification of the needs of the Service beneficiaries with their participation as well. Fostering community ownership or institutionalization of initiatives at work places. Service providers should mix easily, be sociable, be approachable “simplicity.’ Wider consultations needed when making policies and representation should not be Tokenistic. Proper Up to Date Relevant Documentation IEC (Information, Education, & Communication) on HIV & AIDS Issues should be ensured, this relates to gathering and dissemination too (this is known as the PURA theory adoption.)

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

APPENDIX 1

BRIEF CHECKLIST OF LEGISLATION IN DIFFERENT COUNTRIES: Country

Zambia

Anti-

ARVs

ARVs

Social

Health

Employ-

discrim-

Public

Private

Welfare

Care

Ment

ination

Health

Yes

Global F.

Law Yes

Yes/No

Yes

Yes

PEPFAR Zimbabwe

Yes

No

Yes

Yes/No

Yes

Yes

Nigeria

Yes

Yes

Yes

No

No

Yes

Namibia

Yes

Yes

Yes

Yes

Yes/No

Yes

Uganda

Yes

Yes

Yes

No

Yes

Yes/No

South

Yes

Yes

Yes

Yes

Yes

Yes

Yes

Yes

No

No

No

Yes

Africa Mozambique •

Yes/No indicates that some kind of legislation exists, but it is either not enforced, not specific, or not applied.

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Stigma as an obstacle in Service Delivery – Feb 2005 Open Space Technology Conference Working Group Reports © Empowerment Concepts

APPENDIX 2:

MOVING ON (SONG LYRICS) BY BELIEVE DHLIWAYO Why do you wonder about your life How it will be tomorrow? Why do you worry about your status today? You can do the best for yourself To live a long life Make a new start and start moving on. Chorus: Moving on … moving on … Moving on with new strategies today. Moving on … moving on … Make a new start and start moving on.

There are services that will cater for your body, soul and mind There are linkages to empower you today. I know you can do the best for yourself To live a long life, make a new start & start moving on. Chorus: Moving on … moving on … Moving on with new strategies today. Moving on … moving on … Make a new start and start moving on. Oh my God, give us courage and take away fear Give us wisdom to like a changed life We can do the best for ourselves to live A long life make a new start & start moving on Chorus: Moving on … moving on … Moving on with new strategies today. Moving on … moving on … Make a new start and start moving on.

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