Traditional healers, health workers and stigma

When traditional healers first heard about HIV/AIDS, it was sometime much later than other health workers. In addition, their training/practice is based on cultural beliefs which encourage sharing problems and support of the sick in a holistic manner. This might explain why their reactions towards the disease and patients with HIV/AIDS are less judgmental than may be expected. Compared to other health workers, they accept AIDS patients easily.

In Uganda, following training by THETA (Traditional and Modern Health Practitioners Together Against AIDS), they initiated patient support groups, supported their clients through counselling to disclose their HIV status. Some of them decided to take an HIV test and shared their results with colleagues and family members. Two areas of "stigma" or is it inadequate knowledge of the HIV disease, that we have noted in our interaction with traditional healers (THs) are the common practice of giving "stronger treatments" for people with HIV/AIDS (PWHA) with the underlying potential risk of toxicity based on the belief that their disease is complicated, their bodies weak and therefore they need stronger concoctions. This is not limited to THs, health workers will not hesitate to prescribe a third line drug even where a first line medicine would have been sufficient. The liberal use of otherwise unknown drug regimens
in PWHAs is not rare. In other patients, there is a tendency to be cautious which is not the case in PWHAs. Could this be an underlying attitude of "after all this person has AIDS any way?"

The second area is that of confidentiality. Many health workers including traditional healers do not see why the information about a positive HIV test should remain confidential. Many will inform the uninfected/untested sexual partner about their partner's HIV status without seeking patient's permission. They justify this action as a Public Health duty to those who may not be infected yet!

Many health workers will not take an HIV test. Their reasons range from "I know what to do when I begin to develop HIV-related problems". "What is the point of a diagnosis whose care package is merely palliative". This is an indication of the level of stigma in the health care workplace. Even when colleagues begin to suffer from AIDS-related opportunistic infections, they resort to self -treatment, they pretend there is nothing wrong, and they live in denial to the very end. It remains a challenge how to provide support to health workers through existing counselling services. This situation continues to propagate stigma in the health care setting.

HIV-infected traditional healers who have been counselled find it easier to cope including sharing their results with others. I know of several who first learnt of their HIV infection while participating in AIDS training activities. They informed colleagues about the kind of herbal treatments they use to keep themselves free of opportunistic diseases. This may have been a form of advertisement of their products but it also pointed to reduction of stigma with increased understanding of the HIV disease.

Many health workers will tell you that those who open up about their HIV status have nothing to lose especially with regard to social standing and status or they are prepared to take the risk.

This shows that even in a country like Uganda that has been acclaimed to have succeeded in reducing the spread of HIV still has a major battle to fight. If having HIV infection is still a kind of crime among colleagues, clients and peers.

Donna Kabatesi, Uganda
Traditional and Modern Health Practitioners Together Against AIDS (THETA)
Email msftheta@imul.com

(Source: Stigma-AIDS eforum, April 2001. To join email Join-stigma-aids@eforums.healthdev.org)

An Overview: Stigma and health care providers

HIV stigma can operationally defined as that invisible but strongly felt mark given to a person that makes him or her feel different than others. Many focus group discussions with patients and carers reveal that that the hospital was a key place where stigma was first felt or been sustained. The way an HIV suspicion or diagnosis was made, left a feeling of being different, of being looked down upon, inferior, or ignored. Examples we have heard or witnessed include:

- Inability to break the news at the bedside, the euphemisms used for HIV/AIDS among the clinical staff: “immuno-compromised”, “the RVtest came back”, all meant to “protect” the patient from bad news which in fact the staff cannot handle, resulting in news being spread as fire among all staff except the patient: the conspiracy of silence

- Immediate discharge after lab result is known to clinician or withholding a lab result until discharge, with the argument that very little can be done in the hospital and that it is better to see a community or home care program. Where, how, when and why is hardly addressed , giving the patient and family the feeling of being neglected (“dumping care”).

- Being provided with a different kind of care or lack of care, feeling ignored and less respected than other patients.

- Refusal to be admitted, in many hospitals in various countries up till today is still a major issue where stigma is bluntly being translated in immediate discriminatory action, again by marking a patient in such a way that even rights to emergency health care are being denied.

Such examples have also been seen with other diseases or conditions: TB, leprosy, physical disabilities, mental illnesses, and cancer. However in these instances effective therapies, social and psychological support have reduced stigma to a certain extent.

Attitudes and lack of knowledge and skills have been suggested as determinants of stigma in the health setting but are still poorly understood. Hence we have this discussion to get your views on the why, the areas for further study and the possible solutions.

The following factors could explain part of these attitudes and beliefs
among health staff:

- A judgmental reaction to what is perceived by many societies as taboos: sex in the sense of socially disapproved sexual relations and death, two aspects of life many people are often silent about, even more so when these two are linked as it is felt about HIV/AIDS.

- Personal fears of getting infected in the working environment usually expressed by health staff as the major reason for potentially stigmatizing actions, but often exaggerated and not always rational.

- Perceived fears of not being able to handle a patient’s emotional reaction to a diagnosis, often reflect the carers attitude and skills towards psychosocial care.

- Personal fear of one own’s serostatus as a health care staff functioning as a defense mechanism and creating distance between carer and patient . This fear is being aggravated in the absence of VCT services for health care workers. Very few counselors, nurses, doctors, or Ministry of Health staff know their own serostatus.

- Helplessness as a result of lack of counseling skills, lack of time or lack of treatment. Lack of drugs, in particular antiretrovirals are often used as an excuse for the conditions to allow stigma in the health care setting but there are now plenty of examples where HIV care providers have shown that with giving a bit of time and empathy, involving others who do have counseling skills, early and proper management and preventive therapy of opportunistic infections, good social support, good nursing care, good home care and above all good coordination between all these care activities, quality of life and survival benefits can be achieved at low cost.

An obvious result of stigma in the health care setting is silence, in fact a conspiracy of silence as all partners in silence know but don’t say. Somehow it has a protective effect for a patient initially as it gives time to cope with this unjust environment and allows privacy but eventually the silence will only aggravate the suspicion by many others and results in acts of discrimination. The silence becomes secrecy resulting in gossiping and the unspoken marking i.e. stigma occurs.

What are then potential ways to address, fight and reduce stigma:

-At the level of the care provider: openness while maintaining the confidentiality for an individual patient. That sounds as a contradiction but it’s not. An environment like a clinic or hospital can normalize HIV as a day to day business to be openly discussed in staff meetings, health education, public meetings etc showing as an example to provide patient friendly care and as well having peer doctors and nurses as models to juniors how to provide care with dignity, very important in such an hierarchical establishment as a hospital, while at the same time maintaining the needed confidentiality at the individual level through establishing counseling services and giving the feeling of patients of being supported and being left alone. Small things do wonders: body language, an ear to listen, a touch or a small effort extra.

-At the level of the client or patient: discussing at an early stage in the counseling process the options for sharing and disclosure, whenever a client is ready and involving that significant other identified by the client. Formation of groups of patients with chronic illnesses for social and educative events and involvement in planning the care need. Examples from TB wards and HIV support groups within hospitals in Thailand, Uganda.

-At the level of the hospital management: normalization of HIV, taking counseling serious, and providing staff time, space and support to implement services. Ensuring that breaking the news of a laboratory diagnosis is done in the context of counseling pre- and post-test and time to follow up. But also promoting all health staff to know their serostatus and facilitating an anonymous service including follow up care support for infected staff. Feelings of safety can be improved by setting standards to adhere to universal precautions and follow up through infectious disease management committees and provision of post exposure prophylaxis for accidental prick incidents.

-At the level of the community and family: informing and discussing again and again, stimulating care activities to be taken up by communities themselves, addressing prevention and care always together as that will help to normalize HIV/AIDS.

I am sure there are many more practical examples of how we can address stigma in the health care setting and as well many more thoughts on the determinants underlying stigma, hence this call for reactions, responses and ideas.

No doubt certain elements need to be better studied and we call on you for ideas for such an intervention-linked research and topics of research geared to better understanding


Dr Eric van Praag
Email: evanpraag@fhi.org
(Source: Stigma-AIDS eforum, April 2001. To join email Join-stigma-aids@eforums.healthdev.org)

A vital partnership: Stigma reduction and the health of PLWHAs

A report from the last International AIDS Conference, in Bangkok Thailand, July 2004

Stigma and discrimination have been shown at this conference to be alive and well, and continuing to trouble the lives of people living with HIV/AIDS.

Stigma and discrimination against people with HIV/AIDS is seemingly entrenched in many areas across the world. A report published recently by the Asia Pacific Network of People Living with HIV/AIDS (APN+) – “AIDS Discrimination in Asia” – suggests 26% of people living with HIV experience some degree of stigma and discrimination in the community. The study also found women experience significantly more stigma than men, including twice the levels of violence. This raises the spectre of a strong gender component to stigma.

Other studies presented during the conference confirm that negative perceptions of PLWHA are as endemic as the virus itself. This is not news to many, of course.

But as talk of “scaling-up” and “mainstreaming” continues, initiatives will be seriously compromised if stigma and discrimination remain as common as they are now. Any healthcare initiative designed to improve the lives of HIV-positive people or to expand testing must consider the difficulties presented by current levels of stigma.

The situation is further complicated by stigma and discrimination experienced in the health sector – the subject of many papers presented at this conference. The APN+, for example, found that 26% of PLWHA experienced healthcare-related stigma. This is a clear disincentive to treatment, and could reduce the effectiveness of otherwise well-designed programmes.

For example, treatments intended to extend the lives of people with HIV/AIDS, such as TB prophylaxis or counselling on how to live healthily with the disease, can be highly effective in extending lives. But many depend on easy access to healthcare, and HIV-related stigma could be a major barrier to access in many areas across the world.

Dealing with stigma is not easy, however, because it is much more than just a “bad” attitude or fear of infection. Stigma is a socially constructed phenomenon that, according to Peter Aggleton of the University of London, is “not random, but systematic – reinforcing existing divisions” in society. Stigma reduction is therefore not about passing on information, though this may play a small part. Instead, it requires a significant conceptual and cultural repositioning.

But the news was not all bad this week, and attempts to reduce stigma at the personal level are clearly taking into account social context. A number of skills workshops have been held, a common theme to them all is the need for people to “know thyself” as a preliminary step to disentangling the knots of stigma and discrimination. The greater personal understanding that results helps people identify with, rather than exclude people with HIV/AIDS.

Other sessions looked at ways of “measuring” stigma. Some tried to locate the origin of stigma in national or institutional settings.

The fight against stigma will be protracted, but to continue is vital. Because if stigma and discrimination remain at their current levels, adequate healthcare and social support for people living with HIV and AIDS will be incredibly difficult to provide.

Can we afford another 20 years of this?

HDN Key Correspondent
Email: correspondents@hdnet.org

(July 2004)