Tearfund Good Practice Guidelines
Niche Area Four
Ending stigma and discrimination of people living with or affected by HIV and AIDS
1.
DEFINITION AND DESCRIPTION
It has been stated that ‘the AIDS pandemic has highlighted the positive role played by faith-based
organisations in the fight against HIV and AIDS. It has also exposed the weaknesses and failures of the
church which are evident in its discrimination towards people living with the virus, the struggle in the area
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of prevention and its silence in the face of the pandemic ’. This discrimination, for a variety of reasons, is
shared by other religious and secular groups worldwide and has a profound effect on perpetuating, and
increasing the negative impact of the AIDS pandemic.
Stigma is the isolation, or creation of negative attitudes towards someone on the 'basis of particular
attributes such as their gender, HIV status, sexuality or behaviour'. Stigma can be “felt”; anticipated or
feared, or “experienced”. Stigmatising actions such as exclusion from church activities or leadership
positions still occur. Discrimination is ‘a manifestation of stigma, and is any form of arbitrary distinction,
exclusion or restriction, whether by action or omission, based on a stigmatised attitude’2. In terms of HIV
and AIDS, stigma and discrimination is felt by and enacted towards a range of individuals and groups
including those who are HIV positive, their families, members of a group of people who are perceived to
be at greater risk of contracting HIV, and people who go for HIV testing.
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Tearfund is committed to an integrated approach to ending stigma and discrimination . This includes
impact mitigation through support services for women and children (niche area 2), promoting access to
treatment for opportunistic infections and anti-retroviral therapy (niche area 3), prevention of parent to
child transmission (niche area 1), and behaviour
2. NGO CODE OF GOOD PRACTICE IN HIV²
The NGO code of good practice, subscribed to by Tearfund, gives a series of commitments for NGOs to
provide in order to reduce stigma and discrimination:
• Easily accessible information to people living with HIV and AIDS (PLHA) about their rights, with advice
and support for taking action in response to discrimination, through an individual advocacy service or
by referral to other agencies such as legal services, human rights organisations and unions.
• Support in responding to and addressing the consequences of discrimination, including peer support,
counselling and referral to housing, employment, social services and related services.
Specific recommendations by the NGO Code to reduce discrimination include:
• HIV testing is voluntary and includes adequate pre- and post-test counselling with protection of
confidentiality.
• Staff are trained to implement anti-discrimination policies. A mechanism for complaints regarding
discrimination is available.
• Involve community leaders - religious and political – in addressing stigma and discrimination.
Encourage them to play leadership roles including disclosure of personal HIV status.
• Provide public opportunity to discuss HIV and address fears and misconceptions about HIV
transmission. Encourage community involvement in education about HIV transmission, care and
support, and discussion of stigma and the consequences of it.
• Advocate legally with regard to discrimination, directly or through linkage with other agencies.
• Address lack of access to education and socialisation for children affected by HIV.
Underpinning all of these is the importance of the participation of people living with HIV and AIDS (PLHA),
under the movement of ‘Greater Involvement PLHA’ (GIPA) in all aspects of programming (planning,
policy, implementation). An organisational goal should be to achieve GIPA within one’s own organisation.
3.
GUIDELINES FOR PRACTICE
3.1 What would this mean for the person living with HIV?
Implementation of the above should result in a reduction or elimination of negative consequences of
stigma and discrimination relating to HIV which result in a denial of the human rights of privacy, right to
treatment, education, socialisation and an adequate standard of living.
3.1.1 For an individual, the belief that society will have negative attitudes towards them can result in:
• Fear of the diagnosis being made, which results in a failure to get testing, receive treatment and take
precautions against transmitting the virus to sexual partners or the unborn child.
• Low self-esteem if a positive diagnosis is made, which results in poor compliance with treatment,
increased use of alcohol or drugs, and a failure to take preventive measures for transmission.
3.1.2 Where the individual is affected by the negative attitudes and behaviour of others:
• They can be the victim of domestic or other sexual abuse, abandoned by the family or not helped in
getting treatment.
• Within communities there can be social isolation and a refusal by community members to do
business with them, such as buy from a market stall or food vendor
• Children of HIV positive parents may be unable to attend school, be prevented from playing with their
friends by stigmatising relatives, be refused medical services and have limited access to housing and
employment.
3.1.3. Stigma relating to groups at higher risk of contracting HIV:
Individuals belonging to particular marginalised groups may be at increased risk of contracting HIV, either
because the particular practices they engage in are high risk for infection (e.g. men who have sex with
men, intravenous drug users or female and male sex workers) or because their lifestyles involve
interaction with these high risk groups (e.g. prisoners and migrant workers). These groups are less likely to
access regular medical services and to receive targeted educational interventions. This perpetuates the
disadvantage they already suffer. There may be the added problem of deliberate harassment and abuse
by police, religious leaders or others. People from these groups who are HIV positive may be particularly
at risk of being driven away from church, education, treatment, care and support services.
3.2 What should Tearfund-supported projects implemented by partners cover?
• Access to voluntary testing and counselling where locally available.
• Protection of confidentiality with strong resistance to forced disclosure, including by government,
religious leaders or the community.
• Prevention and care targeted at particular high risk population groups
• Home-based care which offers professional help and social support including friendship for the
recovery of self-esteem, and encouragement to seek and comply with treatment.
• Provision of information and education regarding the rights of PLHA.
• Support of PLHA who are negatively affected by discrimination affecting employment, housing and
education (niche area two), including referral to legal or other appropriate services.
• Education for behaviour change (niche area five) including teaching and demonstrating to teachers
and students in order to develop and maintain a positive attitude towards PLHA, and in particular
children affected by HIV and AIDS.
• Education of key community leaders, in particular religious and governmental leaders, regarding
means of transmission of HIV, negative effects of stigma and the importance of encouraging people
to know their HIV status.
• Challenging and enabling church leadership to be tested and to become advocates for testing and to
embrace church members living with HIV and AIDS through national church and individual fellowship.
• Access to treatment, which helps to reduce stigma (niche area three).
• Involvement of PLHA in the programme design, management and implementation.
• Organisational commitment to reasonably accommodate PLHA in the workplace.
• Staff attitudes need to reflect non-discriminatory and non-judgmental attitudes to PLHA.
3.3 How can people living with HIV be involved?
4. People living with HIV provide a positive role model for acceptance of the diagnosis and living with
the virus so should be involved in education and awareness programmes. They can model positive selfesteem and a positive life, and are able to show empathy and understanding to others who are HIV
positive. Involvement in the project can be helpful for the role models also. The partner organisation may
support PLHA to be involved independently of the partner in self-help or other advocacy groups. For
example it could pay transport costs for meetings or a small stipend to cover loss of income while working
in the project. This can particularly encourage the participation of those from minority groups who may
need extra encouragement to participate in national fora across social or cultural barriers.
Greater involvement of people living with HIV and AIDS should be encouraged at all levels of the partner
organisation and programmes, with the aim being to obtain representation in each of the following
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categories: target audience; contributors; speakers; implementers; experts and decision makers . The
level and extent of PLHA involvement in the organisation will depend on access to treatment; other
responsibilities in particular for family and income generation; climate of discrimination e.g. with severe
community stigma it may not be possible for PLHA to disclose status to wider community. Women need
to be actively encouraged and supported to participate.
4.
UNDERSTANDING THE GENDER DIMENSIONS WITHIN THE AREA
Women are particularly vulnerable to negative stereotyping due to HIV and AIDS. They are likely to be
perceived as having been unfaithful to their husband, or of being a sex worker, or of having brought bad
luck to the family. Whereas in many communities – the faithful wife is infected by the unfaithful husband.
This attracts disapproval, a denial of rights and often violence and abandonment. Where a woman is
perceived as being the property of her father or husband, HIV testing of her fiancé prior to marriage is
unlikely to take place. Programmes need to specifically target women in all the areas mentioned under 3.2
above. In particular:
• Protection of property rights of women
• Encouraging families to care for women infected with HIV
• Encouraging church pastors to promote HIV testing of men as well as women prior to marriage
supporting men and women in discordant couple relationships and encourage sexual faithfulness
within the marriage relationship.
5.
RELATIONSHIP TO HOMECARE
Homecare is key in the reduction of discrimination. It increases the self-esteem of someone with HIV if
members of the community go into their home, help them to access treatment and take an advocacy role
at clinics or hospitals. Homecare encourages positive care by other family members and is a model for
neighbours and others in the community of the safety of contact and of how to relate to someone with
this serious chronic illness. If the home visitor is HIV positive themselves, depending on the extent of
disclosure, this can also be a positive model for other PLHA and the wider community. Organisational
involvement with PLHA needs to become personal and friendship based, as well as providing professional
services. Integration of PLHA into the organisation and its ethos is essential.
6. KEY INDICATORS
Baseline measurement of these indicators will be part of project planning and be included in the initial
proposal submitted to Tearfund. This may be carried out by the partner organisation or rely on
information gathered by other agencies within the target community.
Ratio of school attendance with less than 15 days of absence per term, among orphans and
children of HIV+ parents to that among non-orphans and children of HIV- parents
• Evidence of participation of people living with HIV in church:
o by leading in prayer and leading in teaching/fellowship groups
o being able to take communion with others
o taking part in Bible study /fellowship groups
o able to reveal their status.
• PLHA representation within the partner organisation as community care-givers, educators and in
management.
• PLHA receiving regular visits from neighbours.
Number of hours of programme time allocated to education of church leaders and care to
marginalised groups.
• Practice of care and support around pre-marital testing for HIV
• Church seen as a role model for care and stigma reduction in the community
• Questionnaires about stigma. There are standardised questionnaires available which cab be
given anonymously with a focus on:• Should a PLWHA be able to train as a religious leader?
• Should a PLWHA lead a Youth Group?
• Should a PLWHA use a condom?
• The questions can be asked on a Likart Scale – ranging from Strongly Agree to Strongly
Disagree
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REFERENCE LIST
1. Making a difference. Tearfund’s strategic response to the AIDS pandemic. July 2006
2. Renewing our voice: Code of good practice for NGOs responding to HIV/AIDS 2004. Addressing
stigma and discrimination pp70-73. Julia Cabassi, David Wilson. Distributed by Oxfam GB.
Document can be accessed through the website: www.oxfam.org.uk/publications
3. Ecumenical Advocacy Alliance – www.e-alliance.ch