A Participatory Approach to Community-Based HIV/AIDS Awareness

A Participatory Approach to Community-Based HIV/AIDS Awareness [1]

by Edward D. Breslin, The Mvula Trust, South Africa

and

Ron Sawyer, SARAR Transformación, Mexico

2,279 words (text)

1. Introduction

The Department of Health has recently estimated that approximately 6 million South Africans will be HIV positive by 2005. The Department concluded that the largest concentration of people with HIV will be in KwaZulu/Natal. The latest anti-natal survey found an infection rate of 16 percent nationally (up from 14 percent from last year), but the infection rate in KwaZulu/Natal is 26.6 percent. Baring a cure for AIDS, it is estimated that over 1 million people in KwaZulu/Natal alone will have died from the disease by 2006 (reported in the Daily News , 4 June 1998).

Such alarming predictions necessitate a concerted and multi-faceted approach to this problem.

One component of a broader strategy to raise local awareness on the effects of AIDS could be to utilize participatory approaches at grassroots level. Such approaches, if well facilitated, could deepen people’s understanding of the consequences of AIDS at household and community level. In addition, communities can explore, in an unthreatening way, household and community-based care strategies for HIV/AIDS sufferers, and behaviours which do and do not contribute to AIDS transmission.

This paper explores a participatory approach that could be utilized in grassroots HIV/AIDS awareness campaigns. The overall methodology, known as SARAR was originally developed by Lyra Srinivasan, together with Ron Sawyer and Jake Pfohl, and adapted specifically to the water supply and environmental sanitation sector through PROWWESS and the PHAST initiative.(1) More recently, they have explored creative ways in which the methodology can be applied to the HIV/AIDS sector.

A training session for 38 doctors, nurses, clinic sisters and Environmental Health Officers (EHOs) from the south coast of KwaZulu/Natal was held in March 1998. The intention of the training course was to demonstrate how participatory methods could augment mass-media campaigns. The paper summarizes the approach that was demonstrated and documents some of the outcomes from the Workshop.

2. Brief Overview of PHAST

PHAST stands for Participatory Hygiene And Sanitation Transformation. It utilizes visual materials which allow people to explore water supply and environmental sanitation issues in a creative, learner-centred way.

The approach is designed to promote health/hygiene, sanitation and community management of water supply and sanitation facilities. PHAST is an adaptation of the SARAR methodology of participatory learning, which builds on people’s innate ability to address and resolve their own problems . The methodology aims to empower communities to manage their water supply and to control sanitation-related diseases.

One of the great strengths of SARAR/PHAST is that it can be easily adapted for other sectors, such as public works, agriculture, housing and, as suggested here, HIV/AIDS awareness.

3. Family Dynamics and HIV/AIDS

Participants at the KwaZulu/Natal Workshop were initially broken into 9 working groups. Each group was then given a “family”, represented by silhouette characters like the ones illustrated at the top of the following page.(2) Each silhouette represents a family member of differing age and gender (grandparents, mother, father, children, infants). Each working group was given a set of silhouettes with differing household compositions, such as but not limited to:

• a single mother with infants and young children;
• a household with a father, mother and young children;
• a young girl with an infant;
• an elderly couple with children; and
• a household with a father, mother, young children and a grandmother.

Working in their small groups, participants were first asked to give life to their “family”. What would the people in the household be doing? What are the relations between family members? How does the family survive? What are the goals and dreams of the family as a whole, as well as the individuals in the household?

Following this, participants are asked to turn the silhouettes over. They discover that at least one of the family members (mother, father, daughter, grandparent, child) has a red dot on the back of the silhouette.

Participants are told that the person/people with the dot has AIDS.

They are then asked to discuss what the implications of this are for the family. What has changed within the family? How will the family manage their situation as the person/people’s condition deteriorates? What will happen when the person/people die? Could that person transmit HIV/AIDS to other family members? If so, how and what are the implications of this? Finally, how have family members’ dreams and ambitions changed as a result of their family problem?

These issues are first discussed in small working groups before all the groups are given a chance to report back in a plenary session.

The report back session is difficult and sombre. Many speak of how children have had to leave school to care for parents which undermined their future potential, how grandparents are left with children but no longer receive external support such as remittances to properly care for their grandchildren, and how the family spent all the money and household assets it had on “cures” which did not work. All discuss how their dreams were shattered, and how tensions in the family rose as “victims” blamed each other for bringing this disease home. HIV positive mothers are falsely accused of sleeping with other men, and some are beaten and abandoned.

Following this session, participants are asked to place their families in the centre of the room. This represents the community at this point in time. Participants are then asked to visualize the community in 3 years. Who would still be there? They begin removing silhouettes. They are then asked to visualize the community in 5 years, and to remove all the other people they think may have died by that stage.

The room fell silent as the only remaining silhouettes were extremely old people and early teenagers. The teenagers were “lost” as they had been out of school for some time. Many never knew their parents, and some were themselves raised by children. Household assets have been sold or lost, and children eventually disperse, moving to the cities.

Participants were then asked to return to their small groups and to explore what could be done at household level to care for the family members with AIDS. How can their lives be made as comfortable as possible, and how could they be treated with dignity?

Ways in which the tension within the family could be mitigated were discussed, as well as changes in diets and lifestyle that could help prolong the AIDS sufferers’ lives.

The following session would look at how the community could play a supportive role for families with AIDS. Participants were asked to return to the plenary and place their silhouettes in the centre of the room, again depicting the community situation. The “community” would have to solve the problems associated with HIV/AIDS.

The only condition was that someone from the family would first have to ask either another family or the broader community for help.

The room again fell silent, as families were wary of being labelled if it became known that someone in their household had AIDS. The facilitator did not intervene.

Finally, a “nurse” asked a neighbour for help. She explained that her husband (holding up the silhouette figure of the man) had AIDS and that she could not cope. The neighbour explained that her younger daughter also had AIDS, and that perhaps they could share cooking roles. More people started talking - first to their neighbours and friends but eventually in slightly larger groups. One “store owner” said that he would pay for children’s school fees, and the “principal” said that they would introduce classes that taught students how to care for people with AIDS.

The session ended with a group discussion. Participants were clearly upset, but felt a bit better as a result of the final exercise where community members banded together to address their problem.

Participants felt that the silhouettes were effective, as it allowed the small working groups to give life to their family but was not so personal that group members felt they were talking about their specific families. More importantly, participants could create their own situations and would live the experience through their silhouette families, thus learning about the impact in a creative way. Some suggested this would be far more effective than lecturing people on AIDS.

4. “Would You….?”

The Workshop ended with a session where participants were asked how they, as individuals, would treat a person who was HIV positive.

A pocket chart was set up to facilitate the discussion around this issue. On the left hand side of the pocket chart were pictures depicting:

• a child breast feeding;
• two people shaking hands;
• two people sharing food from the same plate;
• two people sharing a drink from the same cup;
• two people hugging each other;
• two people kissing each other;
• a condom (representing sex with a condom); and
• a condom with an x (representing sex without a condom).

“Yes” and “No” were written at the top of the pocket chart (see the “pocket chart” replicated on the following page which shows how people voted at the Workshop).

Participants were asked “would you…”

• breast feed your child if you were HIV positive;
• shake hands with someone you knew was HIV positive;
• share food from the same plate with someone you knew was HIV positive;
• share a drink from the same cup with someone you knew was HIV positive;
• hug someone you knew was HIV positive;
• kiss someone you knew was HIV positive;
• have sex using a condom with someone you knew was HIV positive; and
• have sex without a condom with someone you knew was HIV positive.

Participants used the pocket chart to answer this question. Each participants would place a bean in either the “Yes” or “No” pocket next to each picture. After everyone had voted, the pockets were opened to visualize how people felt about each issue.

The analysis of the pocket chart created the opportunity for considerable debate. The debate on whether health care professionals should advise mothers who were HIV positive to breast feed or not was particularly animated, with some saying that the risk of transmission was lower than commonly believed. Others argued that the risk of transmission was high, and that HIV positive mothers should be dissuaded from breast feeding. Still others argued that many mothers would not be able to afford breast milk substitutes, and that infants could become seriously malnourished if mothers did not have any alternatives to breast feeding.

Another useful debate explored the risks of transmission through the sharing of food and drinks, or by kissing. Some wondered whether saliva was a carrier of AIDS, while others suggested that the real danger was when someone had open sores in their mouths. In reality, there was no clear resolution to this issue, which may suggest the need for additional training for Department of Health staff on technical matters such as this.

The most heated discussion centred around the 3 markers which suggested that some people would have unprotected sex with a person who she/he knew was HIV positive. Some claimed this was completely irresponsible, and that these people needed significant amounts of education on the ways in which AIDS is transmitted.

Importantly, it was suggested that the people who said “yes” to unprotected sex had an opportunity to learn from their peers, a key principle of PHAST. Instead of allowing participants to potentially hurl abuse at those who differed in opinion, the facilitator could intervene and ask why so many people would not have unprotected sex with someone who she/he knew was HIV positive. Community members would, in the end, explain why unprotected sex in general was dangerous at this time. If facilitated well, participants could learn from each other in a way that does not victimize those whose differed in opinion. Moreover, the impact could be greater as community members are increasingly growing weary of health lectures that, consciously or unconsciously, paint local people as ignorant and in need of health knowledge. More often than not, such health knowledge is apparent at local level.

5. Conclusion

HIV/AIDS is a particularly difficult issue to discuss at community level, given local people’s legitimate fear of being stigmatized and ostracized. This presents health care practitioners with a significant dilemma - how can HIV/AIDS be discussed in an open, creative and informative way at local level so that people can express their fears, anxieties and prejudices in an unthreatening manner?

Participatory methodologies, such as the modified versions of SARAR and PHAST presented above, could potentially open-up this discussion at grassroots level. If facilitated properly and caringly, and modified appropriately, these methodologies could also assist in developing and strengthening existent household coping strategies, and may highlight alternative ways for health care professionals to play a supportive, proactive and constructive role at community level.

At a broader level, innovative participatory programmes could be creatively linked with broader mass-media campaigns on condoms, AIDS awareness and caring practices for AIDS patients as part of a multi-faceted and multi-levelled effort to fight this devastating disease.

Notes

1. The genealogy of this methodology stretches back before the UNDP-World Bank PROWWESS project, to the late 1970s. For full details on the development of SARAR, PROWWESS and PHAST, see Srinivasan (1990); Simpson-Hebert et al (1997); and Sawyer et al (1998).

2. This tool is an expanded version of “Family Dynamics”, developed by Lyra Srinivasan for participatory HIVAIDS initiatives.

References

Sawyer, R.; S. Wood; and M. Simpson-Hébert. 1998. PHAST Step-by-step Guide: A Participatory Approach for the Control of Diarrhoeal Disease . WHO: Geneva.

Simpson-Hebert, M.; R. Sawyer; and L. Clarke. 1997. The PHAST Initiative: Participatory Hygiene and Sanitation Transformation - A New Approach to Working with Communities . WHO: Geneva.

Srinivasan, L. 1990. Tools for Community Participation: A Manual for Training Trainers in Participatory Techniques . PROWESS/UNDP-World Bank Water and Sanitation Program: Washington.

[1] Full reference: Breslin, Edward D. and Ron Sawyer, 1999. A Participatory Approach to Community-Based HIV/AIDS Awareness. Development in Practice, Vol 9, No.. 4, pp. 473-479