The International Network of religious Leaders Living with or Personally Affected by HIV (INERELA+) Kenya Chapter is an interfaith platform that supports the involvement of religious leaders in HIV and AIDS initiatives. Through amplification of the prophetic faith voices, the network encourages scaled up and impact oriented responses to both HIV and AIDS, and poverty eradication at local, national and regional. The network has a membership of over 2,500 religious leaders reaching over 2 million people through congregations and community. Its secretariat is based in Nairobi.
Vision: The Vision of INERELA+ Kenya is to see a nation where Stigma, Shame, Denial, Discrimination, Inaction and Mis-action (SSDDIM) are non-existent; and where religious leaders living with or personally affected by HIV and AIDS are witnesses of hope and forces of change in their congregations and communities.
Mission: INERELA+ Kenya exists to equip, empower and engage Religious Leaders Living with or Personally Affected by HIV and AIDS to live positively and openly as agents of hope and change in their faith communities and countries
The network, which has presence in 21 counties in Kenya, promotes collaboration of faith and development leaders to encourage the development and implementation of multi-sectorial, multi-dimensional and multi-level policies, theologies, programs and strategies for defeating HIV and AIDS. The network also strengthens the capacity of local congregations/faith communities to effectively respond to HIV and AIDS through addressing its drivers among them stigma, engaging adolescents on SRHR within faith communities Gender Based Violence (GBV), poverty, inadequate access to sexual and health rights and discrimination of sexual minorities. It also encourages national governments to include Faith Communities and Religious Leaders in the broad response to HIV and AIDS, as well as providing the necessary space and support to religious living with and personally affected by HIV and AIDS for self -acceptance, positive living and involvement in the local, national and international partnerships against HIV and AIDS related Stigma, Shame, Discrimination, Denial, Inaction and Mis-action (SSDDIM).
Steered by four international partners – EAA, GNP+1, INERELA+2 and UNAIDS – The Framework for Dialogue is a tool for developing joint actions and ongoing discussions between religious leaders, faith-based organizations and networks of people living with HIV at national level.
Evidence that quantifies and illustrates the experiences of people living with HIV in a specific country is the starting point of all dialogue and future joint actions. A central piece of evidence used is the People Living with HIV Stigma Index, which measures and detects changing trends in relation to stigma and discrimination experienced by people living with HIV. The Framework for Dialogue process in each country is overseen by a small working group of partners at the national level that implements six key steps to ensure proper planning, follow-up and sustained, ongoing dialogue.
The tool was launched in August 2013 after being pilot tested in Malawi, Ethiopia and Myanmar, and also extended to Asia-Pacific at the regional level. Follow-up in these pilot countries continues, with roll-out to other countries envisaged over the course of the coming months and years.
The meeting was designed to employ a range of methods and approaches, which included the devotion, introduction, group work presentations,overview of the stigma index and the way forward.
The participants were drawn from various denominations and institutions which included; Revivalmissions’church, Immanuel Gospel church, CatholicChurch, and P.C.E.A.There were also Mugikatha andeagles community workers representatives. The meeting was facilitated by two INERELA+KENYA staff members: The National coordinator Jane Ng`ang`a and the program officer Rev.Joseph Njakai.
There were 24number of participants in total 11females 13 males
By Rev Joseph Njakai
The devotion was drawn from Isaiah 1:18`come let us reason together, says the lord. Though your sins are as red as scalet, they shall be as white as snow.’ In this bibletext, God was complaining to the children of Israel due to their sins and they went wayward against the will of God. He said,` my people, my chosen people, my chosen ones no longer hear me.God called the people and he requested for and he requested for dialogue as a way of bringing people who by reason of sins has gone a part and far from him. In this scriptural reference God set this as an example that He can reason with humanity so who are we not to reason with one another?. This is the reason we are here so that we can table out and dialogue our issues as a church and communities of PLHIV .It could be the church has not done what PLHIVhas expected and the PLHIV has not done as expected by the religious leaders. Amos 3: says that How can two walk together unless they agree?. We need to look at issues making the journey difficult fuelled by stigma. We are all equal before God and sickness doesn’t amputate the image of God in us. It is on this premise that we dialogue since we are all equal and made in the image of God.
We therefore need to be together, agree and reason and whatever we bring on the table makes sense and we challenge each other in love.
Inerela+Kenya is an interfaith network of religious leaders living with or personally affected by HIV.Inerela +Kenya is a network of members with faith communities and religious leaders who allows our exisistence.As a network we allow any interested faith leader who is living with or personally affected by HIV can fill a membership form. Inerela+Kenya basically deals with expunging 6 evils called (SSDDIM) and multiplying SAVE.
3.3 Participant Expectations
- Share experiences on positive living with others
- To get deeper knowledge on HIV
- Learn on how PLHIV can collaborate with the church to bring the difference
- To get a clarification whether being HIV positive a disqualification from God. ‘My pastor told me so and that’s why I want to clarify, when I tested positive and my wife tested negative, she left me because of this words said by our pastor. So I want a clarification so that I can overcome the depression that I have had for years. `
- To get a platform where I can encourage other people. ‘When I tested positive my mother discriminated me to the extents she could not come to my house. Since now I’m hopeful I want to vehemently encourage other people to have hope
- How can we strengthen each other in this journey
- Learn on how to live with and support PLHIV in the journey
- Learn on how we can help church leaders who are living with HIV and how they can easily disclose
- Get to learn on the positive living information
- Acquire knowledge on how to help the youths, PLHIV and the negative people I’m working with.
- Learn on how to provide support and care to PLHIV and help those who are negative to remain negative
- Expect to draw encouragement from within so that I can support others who are struggling with denial
- Get more knowledge because the bible says `my people perish for lack of knowledge.`
- Learn on how to support families with disclosure especially when parents are in denial
- To understand the role of church in the HIV agenda
- Learn on how to reduce stigma in the community not only in the HIV arena but other areas in life. For example, ‘I have been living with depression and I have been suicidal in the past due to the stigma that I have faced. I hope this meeting will live a level of expectance of my condition and be able to move on in life.`
- Expect to learn how we can draw support from each other in the journey of life
The model of framework for dialogue was applied in this meeting to generate discussions on the way forward for religious leaders and the PLHIV to understand each other and work together In eradicating the six evils and promoting the SAVE practices.
To strengthen country-level responses from faith communities, religious leaders and networks of people living with HIV that more effectively address the key concerns, experiences and needs of people living with HIV.
- Support the development and sustainability of long-term partnerships, encompassing both collaboration and dialogue, among networks of people living with HIV, faith-based organizations and religious leaders.
- Support the collection, analysis and use of evidence on the experiences and perceptions of people living with HIV within their faith communities.
- Support the documentation and sharing of good policy and practice as well as lessons learned to overcome challenges faced by people living with HIV and faith communities in the response to HIV.
- Strengthened and sustainable collaboration and mutual understanding between religious leaders and people living with HIV.
- Strengthened and improved participation in and quality of access to faith institutions and places of worship by people living with HIV.
- Strengthened responses by networks of people living with HIV to the faith-related needs and experiences of their constituencies.
- Improved access to HIV-related services for people living with and vulnerable to HIV, for example sexual and reproductive health services and legal services.
- Improved quality of life for people living with HIV through faith-based responses that better address the experiences of people living with HIV.
- Increased engagement and visibility of religious leaders in response to the HIV epidemic, including HIV-related stigma reduction.
- Identification of priority areas for further dialogue and collaboration
- Development of a joint action plan for continued dialogue
- Formation of a working group to further dialogue
- Development & signing of a joint commitment
- County-owned. The dialogue is driven by county partners and county priorities.
- Evidence-based. All actions and dialogue are based on evidence, both quantitative and qualitative.
- People-centred. The dialogue does not begin with what faith institutions are doing on HIV, but begins with the experiences of people living with HIV in practicing their faith and the impact of the work of faith institutions on their lives.
- ‘Do no harm’. All participants in the dialogue process agree to a ‘do no harm’ approach, especially in areas of disagreement.
- Equal and meaningful participation. All stakeholders enter into the dialogue as equal partners, allowing full participation and involvement in decision-making throughout the dialo1gue and emerging joint actions.
- New partnerships are formed, and ‘out-of-the-box’ thinking and solutions are encouraged.
- Action-oriented. The focus of the process is to move beyond dialogue to collaborative and constructive actions.
- Safe spaces. The methodology and facilitation of the dialogue aims to create a space where all entering into dialogue can be sure that they will not meet discrimination or judgment.
The presentation was titled;
HIV STIGMA AND DISCRIMINATION
Definition of stigma and discrimination
- Stigma:Stigma is a mark of disgrace that sets a person apart (Stigma is mainly an opinion or judgment held by individuals or society).It can also be referred to degrading attitude of the society that discredits a person or a group due to an attribute such as an illness, nationality, religion etc.
- Discrimination:Discrimination is when a person is treated differently either consciously or subconsciously from others due to an attribute they have like an illness, colour, nationality or religion. Discrimination consists of actions or omissions that are as a result of stigma and directed towards those individuals who are stigmatized.
According to UNAIDS (2007) HIV related stigma is a process of devaluation of people living with HIV or associated with HIV.HIV/AIDS is thought to be the most stigmatized medical condition in the history of mankind. This is mainly because:
- HIV is a chronic life threatening disease.
- Most people are infected with HIV through sex which brings up the issue of morality.
- HIV is associated with such behaviors as sex work, Injecting drug users (IDUs) and homosexuality which are already stigmatized in society.
- Lack of information on how HIV is transmitted. Some people still believe HIV can be transmitted through casual contact.
- HIV infection is often thought by some people to be as a result of one’s fault/personal responsibility.
A national stigma index study was carried out between March and May 2014 in Kenya.
The objectives of the study were as follows;
- To document the levels of the various forms of HIV related S&D against PLHIV.
- To identify factors that perpetuate stigma.
- To document the effects of HIV stigma and discrimination on HIV prevention, treatment and care and support services.
- To compute a quantitative stigma and discrimination index that can be used as a baseline for Kenya to draw conclusions and make recommendations to support advocacy programs that will enhance the rights of PLHIV.
Study populations included People living with HIV (PLHIV), Sex workers and Injecting drug users. Data was collected from a total of 3,127 PLHIVs using questionnaires and 60 focus group discussions.
The Overall Stigma & Discrimination index for Kenya was determined as 45.16 indicative of high stigma levels. The SDI was derived from five key indicators which were then scored on 100 % scale and then averaged to yield a total on the index. Individual categories of SDI were rated as follows: very high(60 and above), high (45-59points), moderate (30-44 points), low (15-29 points) And very low (less than 15 points).
- 18% of people expressing fear of contracting HIV from non-invasive contact with PLHIV.
- 47% of people who judge or blame PLHIV for their sickness.
- 17% of PLHIV who have experienced enacted/self-stigma in the last one year.
- 70% of PLHIV who fear and express concern disclosing their status.
- 74% of PLHIV who notes impact of HIV stigma on individual, family and community level.
The following is a percentage representation of forms of SD (Stigma and discrimination) meted on PLHIVS;
19.4% of the respondents indicated that either sometimes or always, they encountered people not willing that they cook at functions, 17.7% are people not willing to share meals with PLHIVs,17.5% are people not willing to allow PLHIVs to serve meals to guests,19.4% are people not willing to share beddings with PLHIVs, 21.1% are people not willing to share soaps with PLHIVs,13.1% are people not willing to shake hands with PLHIVs , 48% of the respondents reported that some parents did not think it was safe for their children to play with HIV positive children in school and 52.3% indicated that some people would refuse to buy food from them in a market place of several vendors if they were exhibiting signs of HIV and 45.9% of the respondents considered HIV infection a punishment from God
- Stigma leads to high rates of HIV infection.
- PLHIVs who are stigmatized may turn violent.
- Stigma also leads to denial, non-adherence to ART and malicious spread of HIV by PLHIV.
- Uptake of VCT is compromised as a result of high levels of stigma
- Stigma leads to loneliness among PLHIV.
- It also leads to weakened family bond.
- S&D leads to stress and hence early death among PLHIVs.
- PLHIVs spent a lot of funds on treatment far away from home to avoid stigma and discrimination.
Below is a summery table of the group discussions
|GROUP ONE (PLHIV)||1. What are the expectations of PLHIV from religious leaders?
2. What has not been working well that needs to be done?
3. What are the challenges faced/experienced in reaching out to the faith communities and religious leaders?
|GROUP TWO (RELIGIOUS LEADERS)||1. What are the expectations of religious leaders from the PLHIV?
2. What has not been done?
3. What are the challenges the religious leaders are experiencing in regards to PLHIV?
|1. GROUP THREE (THE COMMUNITY HEALTH WORKER)||1. What challenges do they experience?
2. What has not been done for the health workers?
3. What are the expectations?
Question one: What are the expectations of PLHIV from religious leaders?
- More spiritual support
- Give them moral support
- Religious leaders should not be used as a stepping stone to find money
Question two:What has not been working well that needs to be done?
- Religious leaders should collaborate with PLHIV to advocate for issues affecting the PLHIV community.
- They should provide support to the PLHIV especially for diseased women and men to retain their land and property rights.
- Religious leaders should PLHIV and the people who are negative to reduce stigma and help in bridging the gap.
- They should support the PLHIV inself-acceptance. The religious leaders should get involved with PLHIV in meetings and other forums and walk with them together.
Question three:What are the challenges faced/experienced in reaching out to the faith communities and religious leaders?
- Weakened support system for PLHIV- support and strengthen the support groups of PLHIV to have a voice from the CBO.
- Services at the hospitals are not up to expectations for example, talking for much time in the hospitals
- Being abused that is, photos are taken and are used to fundraise and they are not supported.
- Lack of confidentiality among community health workers/volunteers making PLHIV not access services or being involved in the community units.
- Lack of involvement of PLHIV in congregations. For example, opportunities to participate in educating communities.
- Churches should unite and also unite the PLHIV in order to increase support.
- There is a challenge of lack of information on how to educate those not infected to remain uninfected.
Question one: What are the expectations of religious leaders from the PLHIV?
- PLHIV should open up their issues to the religious leaders
- The religious leaders are willing to know PLHIV worries, fears and needs.
- The PLHIV should know that being positive is not the end of everything.
Question two:What has not been done?
- Lack of programs to create awareness on HIV in the congregations
- Religious leaders have not been embracing PLHIV
- Religious leaders have not been motivating and assuring PLHIV that they are important
- Lack of support to the needs of PLHIV
- Lack of networking with PLHIV and others in the HIV services provisions
Question three: What are the challenges the religious leaders are experiencing in regards to PLHIV?
- Dealing with denial among the PLHIV due to internal stigma
- Lack of information/knowledge in handling HIV related issues
- Lack of resources to support PLHIV like addressing their basic needs
- Lack of networking and partnership building
Question one: What challenges do they experience?
- Fear of opening up to the PLHIV thus there is lack of support and lack of confidentiality.
- Poor adherence to treatment among PLHIV who have accepted themselves.
- Lack of proper diet and hygiene among the PLHIV
- Misconceptions around support not because that one doesn’t love but as a sign of generosity.
- High level of poverty being experienced by PLHIV
- Lack of self-acceptance among couples putting health workers in an accepted situation
Question two: What has not been done for health workers?
- More training to be conducted in order to deal with the emerging issues.
- Lack of support for PLHIV support groups to grow
- Lack of enough opportunity to deliver information
- Empowerment of PLHIV to articulate issues for dissemination
- There should be motivation of the community health volunteer’s i.e the financial and material support
- To deal with stigma in congregations
- Hold health talks forums for health workers, PLHIV and religious leaders
- Remove negative mentality towards support to PLHIV
Question three:What are the expectations of the health workers from PLHIV and the religious leaders?
- Adherence to the treatment and nutrition
- Openness from the religious leaders in order to equip them with information
- Form more support groups and incorporate more HIV messages
- Promote more health education to enhance behavior change
- Make use of available resources to create awareness
- Establish CBO (Community based organization)
- More Training of religious leaders should be vehemently conducted in order to disseminated the HIV messages
- Health education among the religious leaders and PLHIV should be encouraged
- The PLHIV should take up spaces within the community units
- Community health workers should have a community health extension whereby they link up with the PLHIV communities.
- Networking like referral partnership among the religious leaders and community volunteers thus a way of saving lives.
- The church should revise or variate their sermons by avoiding stigmatizing sermons
- Promotion of more dialogues in order to reach out to other religious leaders
- Promote more dialogue forums in other counties in order to divulge the message to other religious leaders
- Promote advocacy among the religious leaders and other stakeholders thus circumventing the saying ‘the sheep were available but the shepherd was missing
Overall Project Completion