What is
POSITIVE PREVENTION?
Positive prevention aims to increase the self-esteem, confidence and ability of HIV positive people to protect their own health and to avoid passing on the infection to others. It needs to be implemented within an ethical framework that respects the rights and needs of people living with HIV to enjoy sexual relationships, have reproductive choices and live a full and healthy life. Positive prevention needs a supportive legal and policy environment to protect the rights of people living with HIV – in particular their sexual rights.
Why POSITIVE PREVENTION ?
More than 40 million people worldwide are now living with HIV. Only a small proportion of them know their HIV status and many people with HIV still do not have access to ARV treatment. The global commitments to reaching universal access to HIV treatment, prevention, care and support aim to close these access gaps. As more people become aware of their HIV status and access HIV treatment, greater efforts are needed to adapt or create HIV prevention programmes that meet the HIV prevention needs of people living with HIV. Most prevention strategies to date have been directed towards people who are uninfected with HIV or who do not know their status, to prevent them from becoming infected. Few strategies and messages are designed specifically for HIV positive people. This needs to change.
POSITIVE PREVENTION: TAKING ACTION
Strategy 1:
Information, Education and Risk Reduction
Issues to consider
Most people – even nurses and counselors – find talking about sex very difficult. It is important to recognize that people with HIV continue to have sexual lives after an HIV diagnosis. Positive prevention services need to support open discussions about sex and relationships.
It has been common in some settings for counselors and nurses to tell HIV positive people that they should abstain from sex completely or just have sex with someone else who is HIV positive. This advice may not be helpful to their psychological health on the one hand and on the other hand may expose to them reinfection. It also does not help the majority of HIV positive people who continue to be sexually active, nor those who are in relationships with HIV negative partners and want to continue a safer sexual relationship. The role of health service providers is to ensure that HIV positive people gain the skills they need to negotiate safer sex and maintain healthy sexual relationships.
People’s perceptions of risk can change when their health situation improves. A crucial moment to reinforce prevention messages is when people have been on ARV treatment for some time and are feeling better. Counseling and peer support can help people living with HIV deal with these changes and support protective behavior when their health situation improves.
Introducing referral systems during the process of information dissemination is essential to link HIV positive people with services that may be available for them, such as treatment education and adherence support, STI diagnosis and treatment, community-based support groups, harm reduction services and so on.
The challenge is to empower people with HIV to explore and maintain ways of being sexually active that are full, satisfying and safe. Learning techniques to support consistent condom use and ways to have non-penetrative sex may help to achieve this.
Counseling needs to help HIV positive people and their partners to identify and address barriers that make it difficult to practice safer sex consistently, such as the need for intimacy or fears of rejection.
Let’s talk about Pregnancy!
Issues to consider
Availability and quality of local Pregnant Mother To Child Transmission (PMTCT) services.
Availability and quality of local family planning clinics with staff who have been trained in HIV care and support.
Opportunities exist for HIV positive people to discuss reproductive choices. These may exist in HIV treatment centers, family planning centers, voluntary counseling and testing centers and HIV service organizations. Discussing the choices available is an important step for HIV positive couples who are considering having a baby in order to protect the health of the mother and reduce the chances of HIV transmission to the baby.
Some HIV positive women find it useful to discuss their questions and thoughts about having babies with other HIV positive women. Community support groups can often provide this opportunity.
HIV positive women need support and information in order to take ARV treatment during pregnancy. Many are worried about the effects of the drugs on the baby. Some HIV positive women fear others will find out about their HIV status if they take ARV treatment. Counselors and people who provide information on ARV treatment need to be aware of
these issues and be prepared to discuss them with pregnant HIV positive women.
Male partners need to be involved in discussing options for safe conception, pregnancy, delivery and breastfeeding.
Strategy 2:
Post-test and Ongoing Counseling
Issues to consider
People living with HIV play a vital role in facilitating peer counseling sessions, using their experience of living with HIV. It is important to ensure that HIV positive people are well trained, receive the support they need to play this role and are properly remunerated.
As with HIV testing, many people are reluctant to access counseling even when it is available. This is especially true of highly stigmatized populations such as sex workers, men who have sex with men, injecting drug users, refugees and young people. Counseling services must be developed in ways that respond to the specific needs of these groups. Strategies to raise awareness and promote uptake of counseling services need to include outreach and peer-based methods to mobilize and engage marginalized communities. Counseling needs to be part of good referral pathways to community organizations and structures such as post-test clubs, NGOs, community-based organizations, private and public health providers, traditional healers, groups of people living with HIV, churches, businesses and trade associations.
Health care workers are often in need of training and sensitization to the needs and rights of HIV positive people from marginalized communities. Many HIV positive people experience significant stigma and discrimination in health care settings, and training of health care workers about HIV and HIV-related discrimination helps to overcome these problems.
Strategy 3:
Counseling for Sero-Discordant Couples
Issues to consider
It is more difficult to promote counseling for couples in societies where there are cultural taboos that impede open discussion about sex and sexuality. Couples may be reluctant to attend counseling sessions together, and as a result it can be difficult to implement this strategy. It is important to work closely with communities and provide contextually sensitive alternatives to deal with these obstacles, such as organizing post-test clubs or support groups for couples, and engaging traditional leaders, headmen or church leaders as “gatekeepers” of gender and community norms.
There are many barriers to maintaining consistent condom use, including local taboos and myths; the desire for sexual intimacy and trust, and perceptions that condoms interrupt this intimacy; drug and alcohol use; and inability to negotiate condom use. Counseling cannot always overcome these barriers. Counselors should be prepared to deal with these and other difficulties.
Health care providers play an important role in supporting sero-discordant couples and promoting discussions on the role of non-positive partners in supporting adherence to treatment, decision making on pregnancy and parenting, or more general discussions about sex and sexual health.
Strategy 4:
Dealing with Disclosure
Issues to consider
HIV positive people have the right to choose who, how and when they tell about their status. Advising all people to disclose always can have many negative consequences.
In some communities women have more to lose than men. Many women do not disclose their status for fear that their children will be discriminated against in school or in their community. Many women fear domestic violence or have experienced domestic violence as a result of disclosing their status to their partners. It is important to understand that disclosure to just one or two people and not to members of the family is an alternative for many people who want to protect themselves and their families from harm.
Strategies to promote disclosure should be supported by community education and advocacy efforts to ensure that laws and policies are in place that protect HIV positive people against discrimination and that promote confidentiality and privacy.
Strategy 5:
HIV Testing and Counseling
Issues to consider
As the number of testing and counseling sites increases, it is essential to ensure quality. The establishment of networking opportunities to share experiences among testing providers, improve referral systems and promote best practice can support quality standards in testing.
In some places it is difficult to recruit enough trained counselors to respond to the increasing demand for testing. UNAIDS (2002) provides suggestions on how to incorporate different kinds of counselors, with different roles, training and responsibilities. People living with HIV can become peer counselors, drawing on their own experiences. Non-health care workers can be trained in rapid test kit use, lay counselors can be employed, and specific courses on HIV testing can be provided and accredited, avoiding the need to recruit qualified generic counselors, psychologists or social workers. It is important to provide training for counselors who may find it difficult to talk about sex and sexual relations.
Pre-test group counseling offers a further alternative in situations where there are too few counselors. Pre-test counseling is first provided to a group of people and then the decision to go for testing (or not) is made on an individual basis. Post-test counseling is only provided on an individual basis. Group counseling prior to a test offers an alternative way to deal with the needs of specific populations, such as men who have sex with men, injecting drug users or sex workers, or in health care settings such as antenatal clinics.
Strategy 6:
Treatment and Care
Issues to consider
It is important to ensure clear information about ARV treatment for all households, communities and people with HIV to avoid misunderstandings and to clarify the complex issues around treatment. Information should include basic facts on the type of treatment available, the need for high levels of adherence, the side effects of taking treatment and the need for good nutrition.
Some studies point to behavior change as a result of ARV treatment. “Treatment optimism” is the term applied to the phenomenon of false perceptions arising out of treatment success, leading to a “relaxing” of safer sex practice. The extent of this problem is unknown, but concerns about the potential for treatment optimism underlines the importance of constant and comprehensive strategies for positive prevention to address false perceptions about ARV treatment and infectivity.
The relationship between the health care worker and the patient is essential to ensure that people understand their treatment and follow the prescription they have received. Health care workers and peer treatment supporters can support people to understand their medications and take them regularly. Treatment services provide vitally important opportunities to reinforce positive prevention.
Strategy 7:
Prevention Supplies and Commodities
Issues to consider
Availability, access and affordability of male and female condoms and lubricant. Organizations that specialize in social condom marketing and free condom distribution can work together with health clinics to ensure a reliable supply of condoms and that wider distribution is achieved.
Correct and consistent condom use is essential for people living with HIV. This information should be made widely available in health care facilities and ARV treatment delivery sites.
Promoting condom use among stable couples can be challenging. Couples who may assume it is too late to adopt safer sexual practices must be encouraged and supported to use condoms through ongoing counseling. Health care facilities need to be linked to counseling services in order to support HIV positive people to make good-quality risk assessments of different sexual behaviors and to promote ongoing condom use.
Strategy 8:
Developing Referral Systems
Issues to consider
A referral system works best when the care providers are familiar with both the nature and the quality of services provided by each facility in order to make appropriate referrals. The experience of people using the services should also be considered in assessing and improving the quality of services.
It is important to ensure a two-way referral system from community to health care services and back to the community. Availability of a pamphlet listing all the services that can be accessed in a particular community may help maintain a good flow in the referral process.
Strategy 9:
Facilitating Post-Test Clubs and other Peer Support Groups
Issues to consider
In high-prevalence countries, post-test clubs have proved effective in reducing stigma related to HIV at community level. In countries where the epidemic is concentrated in specific groups, care should be taken to ensure that post-test clubs do not draw negative attention, increasing stigma and discrimination towards groups already marginalized in society, such as people living with HIV, injecting drug users, men who have sex with men, and sex workers.
Women living with HIV often need particular support and may prefer to discuss some issues only with other HIV positive women. The creation of HIV positive women-only support groups can help women discuss issues such as how to get their men to practice safer sex; how to disclose their status to partners or children; pregnancy and breastfeeding; and how, when and where to ask for home-based care or to organize income generating activities to ensure household security.
Specific support groups for injecting drug users have also proved essential in order to create safer spaces for former or active users. Some of these groups may be connected to needle exchange and methadone substitution programmes in countries where these are available.
Support groups for specific populations such as HIV positive sex workers or HIV positive men who have sex with other men are important for creating safe spaces where they can meet together and develop networks of mutual support. They also can become a platform for advocacy aimed at improving services, highlighting human rights abuses and participating in decision making.
Strategy 10:
Training HIV Positive People as Peer Educators and Counsellors
Issues to consider
There is an assumption that the experience of living with HIV is a sufficient basis for becoming a community worker. Many HIV positive people have gone through very difficult times and need support to rebuild their confidence before taking on the role of a community worker. Lack of formal education should not be an obstacle to training or
to operating as peer counselors. There are many ways of offering information and support that do not rely on the use of printed materials. For example, in Khayelitsha, South Africa, the Mothers 2 Mothers 2 Be programme is supporting HIV positive pregnant women to make decisions about safe motherhood through peer counseling. HIV positive women who have recently had HIV negative babies share their experiences with pregnant women in the waiting rooms of antenatal clinics and provide information on safe delivery and breastfeeding.
Training for peer counselors and peer educators should include support to cope with the stresses of this challenging work. Ongoing supervision is also important to ensure that information provided is up to date and accurate.
Personal testimonies by HIV positive speakers can be powerful vehicles for HIV and AIDS awareness raising, and may help to reduce stigma and discrimination. But people need support and encouragement to speak publicly.
People living with HIV may be effective community educators, but they should be remunerated adequately, financially or in kind.
Strategy 11:
Reinforcing Positive Prevention through Home-Based Care
Issues to consider
Home-based care team members and volunteers need to be well supported to ensure they have the skills and resources needed to provide prevention, treatment, care and support services, including accurate information on HIV prevention, safer sex and sexual health.
Appropriate training and support should be offered to every member of the home-based care team, and in particular to people living with HIV who form part of the home-based care team.
Strategy 12:
Reinforcing Positive Prevention through Harm Reduction and Needle Exchange Programmes
Issues to consider
HIV positive injecting drug users are regularly denied access to health care services, including ARV treatment, because of their drug use. More efforts are needed to develop different service models and to provide adequate training to health care providers to respond to the specific needs of injecting drug users, without discrimination. Mobile clinics, outreach services and services that address the other needs of drug users – these are some examples of the ways in which services need to adapt to meet the needs of drug users who are often highly stigmatized, very poor and who have many health and social support needs.
It is important to combine improving services for drug users with advocacy efforts to ensure equal access to health care services, including ARV treatment, to all HIV positive people, including those who inject drugs.
Understanding the particular needs of women who use drugs is an important dimension of positive prevention for drug users. Dependency on drugs can create particular pressures for women, and many need direct support from peers or from services to gain some control over both their injecting and their sexual lives. It is important to have separate support groups for women, and separate information and education on sex and sexual health, relationships, drugs and substitution therapy, and pregnancy and family planning services.
Strategy 13:
Involving HIV positive people
Issues to consider
HIV prevention efforts targeting people living with HIV and other vulnerable populations are more effective when the target communities are involved. This involvement can also contribute towards reducing stigma in their community. The involvement of people living with HIV in the planning, development, delivery and evaluation of positive prevention enhances the relevance and reach of these interventions.
HIV positive people have the right to make decisions about the level and type of their
involvement. They also have the right to choose to be involved without making their HIV status public.
Organizations need to create an organizational culture that is conducive to meaningful involvement, This includes promoting behaviors, language and attitudes that encourage involvement. As well as organizational policy that supports people with HIV to work effectively at all levels of an organization.
Strategy 14:
Advocacy for HIV prevention
Issues to consider
Advocacy efforts are stronger when they include people living with HIV. Mobilizing the voices of people with HIV who need services has a powerful effect on decision-makers.
Where ARV treatment is limited, it is important to recognize that an overemphasis on HIV
prevention for people with HIV can have a stigmatizing effect and can reinforce harmful stereotypes of HIV positive people as exclusively responsible for HIV transmission.
Strategy 15:
Creating a Supportive Legal and Policy Environment for Positive Prevention
Issues to consider
Legal remedies and law reform to protect the rights of HIV positive people can have a powerful impact by enshrining their rights in law. But these processes – advocating and campaigning for law reform – can be lengthy and resource intensive. Coalitions of groups with similar interests have been effective in campaigning for HIV-related law reform.
Supportive legal and policy environments are created not only by good laws and policy but also by good education – of the general public, of professionals and of specific communities. Education about HIV and AIDS in and of itself is not enough. The general public, professionals and specific communities need education about HIV- related discrimination and the harm it causes.
Source:
www.aidsalliance.org/includes/.../Positive_prevention.pdf
JaKe Positive. BE SAFE! +)