[] Guidelines for establishing and operating couple s clubs Supported by Health Communication Partnership with funding from United States Agency for International Development Prepared by Jude Ssenyonjo June, 2011 [This document provides guidelines for establishing and operating discordant couple clubs. AIC branches. The document spells out steps to be followed while establishing these clubs and necessary topics to be covered during the meetings. These guidelines are meant for HCT providers, Non Governmental Organizations (NGOs) and community based organizations (CBOs) with interest and resources to initiate and support discordant couple clubs]
Table of Contents Introduction... 3 What is a discordant couple?... 3 What is the prevalence of discordance?... 3 Clarification about discordance... 4 Explanation for Discordance... 4 HIV is not transmitted on every exposure just like:... 4 Some people in a household will get flu and others will not when exposed... 5 Target audience for these guidelines... 5 These guidelines are meant for HCT providers, Non Governmental Organisations (NGOs) and community based organizations (CBOs) with interest and resources to initiate and support discordant couple clubs.... 5 This booklet articulates the basic guidelines which are grouped under five main headings:... 5 Factors affecting HIV Transmission risks... 5 Why is it important to form discordant couple clubs?... 7 Coordination and logistics:... 8 Participation of PLHIVS in the formation of couple clubs.... 8 Membership to Discordant Couple Clubs... 8 Process of Enrollment into the club... 9 Benefits of belonging to the discordant couple club... 9 Special considerations for supporting the clubs?... 9 How regular should the clubs meet?... 10 Facilitation for the clubs:... 10 Activities:... 10 Guidelines for Follow ups... 11 Issues to be considered during follow up;... 11 PLAN FOR REGULAR WORKSHOPS AT THE CENTERS... 11 Issues that could be discussed during the Discordant Couples Meetings/Workshops:... 12 Risk reduction options for discordant couples.... 12 Network with national organizations... 12 Documentation... 13 Community engagement /sensitization... 13 Operational Research... 13 Monitoring and Evaluation... 13 2 P age
Introduction The 2004/2005 Uganda HIV sero Behavioral survey revealed a high incidence of HIV among married couples. Married persons account for an estimated 65% of new infections and discordant couples comprise up to 50% of these transmissions.90% of married women and 89% of married men do not know the HIV status of any of their partners or spouses. The new infection rates are estimated at 3 3.4million in Sub Saharan Africa and the high prevalence is attributed to: poverty, cultural practices, gender predisposition especially women, lack of awareness, risky behavior, stigma and non disclosure, natural disasters and poor accessibility to ARVS. These factors pose a big threat especially in relationships where one partner is positive and the other negative. This is referred to as discordance. What is a discordant couple? A discordant couple can be described as two people recognized to be having an ongoing sexual relationship. One partner is HIV positive and the other is negative. Discordant couples are very common today. What is the prevalence of discordance? According to the information presented by CDC team at a workshop in November 2003, (TASO Training Center): 5 35% of couples in Sub Saharan Africa are discordant. In Uganda, about 5% of couples who test for HIV are discordant. 65% of all new infections in Uganda today are amongst married couples. From a study conducted by AIC in Rakai amongst 415 discordant couples, 12% transmitted HIV to the negative partner (Sero converted) per year. This rate was: Higher for young partners: 15% sero converted per year for 15 19 year olds 17% for uncircumcised male partners; no sero conversions for circumcised male partners. Among TASO Clients more discordant couples than expected have been registered. According to the study findings amongst TASO Tororo 3 P age
Clients, 35% of TASO Clients in Tororo are living with an HIV negative partner: The findings also reveal that: 39% of the partners did not know the HIV status of the TASO clients. 64% of TASO clients did not know the HIV status of their partners In 37% neither the clients nor the partner knew the other s HIV status. In a study conducted amongst the TASO Jinja clients (under the Prevention with positives (PWP) 1116 clients were assessed). Of those sexually active, 80 %( 187/235) of men and 87 %( 347/401) of women were at risk of HIV transmission. This was because; they did not practice consistent condom use and had partners whose status was either unknown or known to be negative. These were generally considered to be in a discordant relationship. According to the study, a couple is discordant if; a client suspects partner is negative, knows partner s status while a couple is concordant if the respondent knows the partner has tested positive. Negative partners in discordant couples are the highest known risk group in Uganda today with a risk 10 times higher than that of the general population. This implies that in TASO the negative partners are at a very high risk of HIV infection thus the urgent need to develop a support strategy for these couples in risk reduction in order to reduce the risk of HIV transmission among couples. Only 12% of clients interviewed in TASO Jinja, understood that HIV discordance was possible, thus the need to strengthen counseling and education on HIV discordance and disclosure. Clarification about discordance Discordance is not a sure sign of infidelity. Couples can remain discordant for a long time even more than 10 years. HIV negative females in discordant couples are often threatened especially when the male partner refuses to use condoms. Explanation for Discordance HIV is not transmitted on every exposure just like: Women do not get pregnant every time they have sex 4 P age
Some people in a household will get flu and others will not when exposed Sometimes a couple becomes discordant due to outside partners or through other exposures to HIV According to information on Internet: unknown genetic factor(s) and neutralizing antibody of broad and high activity contribute to resistance to HIV infection in discordant couple Target audience for these guidelines These guidelines are meant for HCT providers, Non Governmental Organizations (NGOs) and community based organizations (CBOs) with interest and resources to initiate and support discordant couple clubs. This booklet articulates the basic guidelines which are grouped under five main headings: 1. Forming support groups 2. Purpose of support groups 3. Membership 4. Enrollment 5. activities Factors affecting HIV Transmission risks Probability of HIV transmission depends on the following factors: Use of Barrier protection: Condom use greatly reduces risk of transmission. The study findings amongst the TASO TORORO Clients (for those who were sexually active) show that non condom use was 57% among HIV positive clients who did not know the HIV status of their partners; while non Condom use was 68% among HIV positive Clients who did not know the HIV status of their partners and neither did the partner know that the client was HIV positive. This requires that the counseling provided spells out clearly the risks involved in non condom use if especially one does not know partner s Sero status or in cases of discordance. 5 P age
Circumcision There is increasing evidence of protection amongst circumcised males. Of the 415 discordant couples in the Rakai study, there was 17% sero conversion for the uncircumcised male partners where as there was no sero conversion for circumcised male partners. Abstinence Eliminates risk of transmission Type of Sex Risk of HIV Transmission Anal/penile 1 in 100 Vaginal/penile 1 in 500 1000 Oral Sex 1 in 10,000 There are other high risk sexual practices like dry sex and traumatic sex. Mutual masturbation is said to cause no risk. Frequency of Sex Sex less often means fewer chances of transmission Presence of STDS This can increase the transmission of HIV by ~5times. General Herpes (HSV 2) is very common and increases the risk of transmission. Among the PWP participants in TASO Jinja, amongst the men 73% had genital herpes whereas 81% of the women had it too. Viral load People with higher viral loads are more likely to transmit HIV to Negative partners. Information on Viral load from the Rakai study on the 415 discordant couples, revealed that: Mean viral load for those whose partners got infected: 90,254 copies per mil liter Mean viral load for those who did not transmit: 38,029 copies per milliliter. Immunity Rare mutation in people s immune system suggests a few people may have resistance to HIV infection; some may develop temporary 6 P age
resistance when highly exposed. (This is impossible to predict and provides dangerous counseling message). On average in a year 10 12% of discordant couples will transmit HIV to the negative partner. In a recent study in Tanzania, HIV negative partners in discordant couples were 58 times more likely to get infected than individuals in concordant negative couples. Why is it important to form discordant couple clubs? Discordant couples give and receive emotional, social and spiritual support during club meeting days. During these meetings, discordant couples share experiences confidentially, gain self confidence, make friends and build support from their colleagues, develop and sustain positive strategies for living with the virus and also strengthen their knowledge about HIV and AIDS and how the positive partner can protect the negative partner from the HIV infection. Couples also share challenges, experiences and they come to realize that they are not alone in their situation. It is through this experience sharing that members brainstorm solutions, give each other advice and form friendships. The members also get firsthand advice and approaches they learn from peers who are coping with very similar challenges. It is also during these clubs meeting days that couples are screened for tuberculosis and take another HIV test to monitor sero conversion. Couples also access treatment, condoms and insecticide treated nets to prevent opportunistic infections like malaria. In addition, the discordant clubs often advocate for member s mutual goals and create awareness about shared challenges which leads to policies that foster supportive community environments in which members thrive. These will provide opportunity for fellowship and support amongst couples undergoing similar experiences. 7 P age
It will also provide opportunity for the negative partners to get information on risk reduction and address their questions on discordance. It will again provide opportunity to mobilize support for the positive partners thus reducing some of the marital conflicts, blame and suspicions that often exist. These will offer psychosocial support to one another. Advocate for prevention of related diseases like TB, STIs and monitor the sero conversion of the partners. Coordination and logistics: i) The meeting venue should be accessible, affordable, safe and agreeable to all club members ii) Refreshment should be availed to members since some of them may have travelled significant distances to attend the meeting. iii) Meeting facilitators may come from within the organization or group or outside the organization. For facilitators from outside, there is need to have a clear understanding of purpose and must adhere to the ground rules and uphold confidentiality Participation of PLHIVS in the formation of couple clubs. Although health facilities, CBOS play a role in forming, nurturing and facilitating these groups, the couples need to be actively involved. They should be the drivers and the decision makers in such groups. Membership to Discordant Couple Clubs The couple club should comprise of HIV discordant couples who meet the following criteria; - Must have tested as a couple at an accredited health facility - Couples who are living together or have been together for more than six months - Couples in a stable ad sexually active relationship - Couples who voluntary agree to join the Couple Club 8 P age
- The clients code of conduct should be observed and situations that will enhance marital conflicts should be avoided/addressed The club should preferably have couples that have lived together for more than 6months married (with or without children) and are sexually active. These should be made aware that there is no definite answer/explanation for discordance Process of Enrollment into the club This process of enrolling couples into the club should be coordinated by a counselor supervisor or a designated official at the health facility. 1. couple should undergo some kind of briefing / orientation about the purpose of the club 2. Both partners should be tested to confirm the status 3. Couple must be registered by Counselor Coordinator. Note: The Center should maintain a Register of Discordant couples. 4. Introduce the Discordant club concept to those newly identified at the centre. 5. The couple joining must sign a consent form and agree to uphold confidentiality. There should be no fee charged to join the club. Benefits of belonging to the discordant couple club Free condoms Free on going counseling support whenever they come Free medical treatment Free access to support information such as educational films Access to HIV testing on recommendation by a counselor Free IEC materials There should be effort to provide practical unbiased information to this group and the following could guide the process of supporting the group: Special considerations for supporting the clubs? Ensure that information on, behavior change is clearly communicated and emphasized. 9 P age
. Provide on going support in form of counseling Encourage peer group support. (Train some in peer counseling) Provide up to date information on discordance Meet ladies alone and men alone sometimes; discuss with them the issues of window period and other concerns How regular should the clubs meet? Arrange for them to meet once every month or two months Ensure the positive partner is supported for the welfare of the children. Facilitation for the clubs: Invite facilitators for the group from outside. Provide adequate information on PMTCT and Family planning Encourage discordant couples that are coping to come and talk to them. Provide for group counseling The new ones should be supported. The on going couples should not feel they are alone Activities: On a regular basis, members should work together to develop a diary of events and a schedule of activities for a month or a quarter. Creating a diary helps ensure that members expectations and needs be addressed during that period. The couples (old and new) should be able to share their experiences Provide Educational films. Encourage partners to have HIV antibody Testing. Avail free IEC materials Home visit these couples following what has been found out during the meetings or report of illness of positive partner Organize co curricular activities like games and sports to strengthen the bond and use such as platform to sensitize the public on issues concerning discordance. 10 P age
Engage in regular follow ups for the members of the discordant club to monitor their progress based on the different issues discussed. Guidelines for Follow ups For consistency, follow ups will be done by the same counselor if possible. Reviewing of planned actions of the previous visit. Discuss how the planned actions were implemented in view of the success and problems/ challenges they faced while implementing the previously agreed plans. Separate couples for individual discussions. Revise AIC protocol on result counseling of discordant couples. Issues to be considered during follow up; Give clear information about the long term nature of HIV infections, window period which may call for other HIV test to confirm the results of the negative partner. Sexual relations and condom use. The need for couples to communicate and share feelings. The importance of keeping the HIV negative partner free from infection. Family planning methods that is, apart from the condom, encourage another back up method. Need for care and support for each other. Emphasize health care follow ups for the positive partner. Disclosure of results that is to family members and children putting into consideration their age. Family preparedness in terms of welfare. Explore external supports Will making vis à vis property inheritance. PLAN FOR REGULAR WORKSHOPS AT THE CENTERS These workshops should be designed to address the concerns of discordant couples. Use the opportunity for them not only to share experiences but also to get more information and lay strategies on how those coping can sensitize the public. Hold discussion groups and meetings where clients would come together to learn and gain skills on 11 P age
partner communication and disclosure and knowledge on sexual issues and risk reduction. Issues that could be discussed during the Discordant Couples Meetings/Workshops: Progression of HIV Comprehensive Prevention package Communication as a couple Importance of keeping the negative partner free from HIV. Family Planning methods. Healthcare follow up for the HIV positive person HIV status disclosure Planning for the families (e.g. get a facilitator for I GAs.) Explore external support Invite medical people to talk about discordance/discordant couples that are coping to talk to them Will making Positive living practices such as safer sex ART and HIV transmission Partner responsibility and support to address gender issues Risk reduction options for discordant couples. a. Disclosure of HIV status b. Use of condoms every time they have sex c. Diagnose and treat STDs d. Reduce frequency of sex. e. Practice alternative types of sex f. Seek ongoing support (join couples club) g. Consider circumcision, Abstain from sex h. Regular HIV antibody testing for the negative partner. Network with national organizations There are other organizations running such programmes. These should be contacted and their experiences shared to see what input this could add to the group. 12 P age
Documentation Make sure you document the best practices, key learning s and challenges for future programming purposes. Exchange visits can be an effective way of promoting, learning and sharing amongst clubs Community engagement /sensitization There should be sensitization programmes about discordance conducted in the communities. Radio programmes should include information on discordance as well as encouraging coping couples to share their experiences with the public. Operational Research Operational Research on the psychosocial challenges and coping mechanisms amongst Discordant Couples should be carried out so that a better intervention strategy could be devised. Monitoring and Evaluation Monitoring and Evaluation of Discordant Couples support programmes should be carried out regularly. 13 P age