AND RELIGIOUS RESPONSES
An overview of issues relating to stigma and the religious sector in
D. Campbell –
International Health Programme Consultant
Alison Rader – HIV/AIDS and Community Development Consultant
1. A movement towards spiritual
health - perceptions and realities
Religion is a structural representation of personal faith within
people. The aspect of personal faith is often neglected in debate and
perceptions about religious organizations and leadership.
Religious groups, in general, have a reputation for responding to the
issue of HIV in negative terms. Factors that influence this
perception have included judgmental comment from religious
leaders; debate about condoms; and an obstructive stance towards
policy development, particularly regarding drug use, commercial sex, and
harm reduction approaches. The religious sector has been largely
unwilling to engage in any way that could imply dilution of moral
standards. As a result, people with HIV have experienced rejection by
religious people, congregations or institutions.
Such experiences have been widely shared, yet is this the whole story?
Have religious organizations been stereotyped before they are given a
chance to respond? Why has it taken so long (15 years) for the role of
religion in Africa to be affirmed rather than discouraged? What have
been the assumptions on the part of governments, WHO (GPA), UN
co-sponsors, and UNAIDS (since 1996)?
Not all religious organizations or congregations are responding – many
have not yet taken it as their concern, yet at the same time,
congregational and personal response has been happening which is more
difficult to accumulatively measure than the more visible organizational
response. The perception and reality are not always matched.
While many have not responded quickly, some faith based groups have been
working in community based care and prevention and have had clear
experiences of stigma reduction in whole communities. There has been
characterization of a relationally based community development approach
that affirms a wider confidentiality determined by the community that is
a safe haven for expansion of response for inclusion. This is in
contrast to community fear, lack of inclusion, and stigma. The fact
that religious communities are usually interwoven into the wider
community is a major asset and strength for scaling up, for sustaining
response, and for promoting mutual healthy accountability for care,
support and change.
The acknowledgement of capacity for personal faith, is critical to
effective community response. Intimate sexual and drug using
behaviours do not change easily, yet faith based motivation is a hugely
powerful internal response that is largely untapped. Politics,
environment, poverty, gender insensitivity, and power inequity influence
motivation but do not touch the soul of a community in the same way as
relationship based respect for spiritual capacity. Facilitation of
local family and neighbourhood spiritual connectedness is a key
foundation for effective response.
Efforts have been made to analyse the effect of accumulating loss on the
hope of persons with HIV, their families and communities. The analysis
has been linked to faith, to views about the future and to stigma
2. Response by religious organizations
Religious organizations and leaders have obstructed response. Often
this has happened in a context of passionate defence of moral principle,
consistent with their vocation and vision of service to God and to
people; yet also with too much distance from local reality.
‘Morality’ can be received as affirmation of the mutual good, without
assumption or judgement or exclusion. It can be an expression of
solidarity, containing beliefs that are offered and often owned by the
wider community. Articulation of religious values and norms can be
part of the community identity rather than an imposition.
There can be dysfunction between beliefs and practice, in any
organization. With religious people, vision is not in question
generally, because it is not difficult for people to subscribe to the
concepts of loving care and the need for hope. However, corresponding
practices are often in question. For example, instead of a
participatory approach, an imposing or provider approach is dominant.
For the religious sector there is an immediate need to develop
convictional motivation based on theological grounding for both beliefs
As leaders engage in the life situation of people with HIV, almost
inevitably, perspective shifts. This was the case for those involved
in exposure visits preceding a consultation of church leaders with
UNAIDS held in Botswana in September 1999. As leaders met with
families with AIDS/HIV in their homes and as they participated in
neighbourhood discussions, pain was felt, compassion deepened and
commitment to involvement grew. It was also significant that the
programs they visited were run by faith based groups.
The Botswana consultation was part of an African initiative to
strengthen action by people of Christian faith in their own local
communities, as part of those communities, and also as part of the
church. (see attached vision and direction framework developed for the
Consultation with Christian Leaders, Development Organizations and
UNAIDS on HIV/AIDS Related Issues, held in Botswana in September
There are other examples of innovative engagement, through which some
pathways for shared response can develop -- including religious
organizations and faith motivated neighbourhoods and other communities,
within wider societal and political response.
Examples already exist, and are developing, of interfaith dialogue and
co-operation in relation to HIV/AIDS. These include:
o In 1998, a ‘Conference on AIDS and Religion’ was held in
Senegal(2). After a presentation by a Christian organization of
community and home based approaches within countries such as India,
Haiti, Kenya and the Philippines, an Imam commented: ‘We can work
together in the community. We believe in family and reconciliation
with God. You believe in relationship between people representing the
process of relationship to God. Government is promoting community
ownership which depends on good relationship. We can all share on
o In Hikkadua
town, south of Colombo, Sri Lanka, a Christian team which has been doing
home care in Buddhist neighbourhoods for four years has recently been
invited to the local Buddhist temple to facilitate discussion between
members of the local community(3).
o The Africa Regional Forum of Religious Health Organizations in
Reproductive Health is based on partnership between religious health
networks, Christian and Islamic. The Forum, facilitated by
International Family Health was launched at the International
Conference on AIDS and STDs in Africa, September 1999.(4)
o The UK NGO AIDS Consortium is sponsoring a series of meetings on
responses to HIV/AIDS by faith based organizations(5).
o The draft declaration of UNGASS (April 2001) affirms the necessity
of faith based organizational response(6)
These and other
examples represent increased confidence within secular organizations
to explicitly affirm, respect, and engage with religious organizations,
faith based communities and persons of faith.
3. What has the experience of some faith-based responses shown about
reducing stigma? Some key themes include:
This is usefully characterised as a supportive presence that accompanies
people in their situation, for example, visiting a neighbour or a
community visit. Care is sometimes named as ‘love in action’; it
includes mutual support between family, neighbours, community, and a
relationship of being with and interacting with others. This
understanding is in contrast to the common view that care is provision
Change occurs by seeing care (or experiencing care), which leads people
to acknowledge the reality of HIV, and may result in a change in
understanding and attitude. Care helps to make change more likely to
happen especially when care is explored in the home setting. Change
does not happen simply in persons in isolation but when the care and
change process is relational in nature, change is expansive. It is a
foundation for going to scale, and for organizational and institutional
adaptation, as a contributing influence in scaling up response.
(3) Link between care and change
The link between care and change is relational. Care that is
personal and is observed by people in the household and neighbourhood,
can generate motivation and action for shared change. This can rapidly
shift a situation from stigma to shared responsibility for change around
issues of mutual concern.
The care to change linkage is also termed ‘care/prevention’ linkage. It
is a key strategic approach to expansion of circles of involvement in
local community and organizational responses to HIV/AIDS.
(4) Distinction between public disclosure and shared confidentiality
Shared confidentiality is shared knowledge and understanding of meanings
within a context of respectful intimacy within a group in which there is
a sense of mutual accountability. Knowledge that is shared in this
context is not a secret. The content and meanings are known within the
group, even though there is not necessarily open conversation about the
content and meanings.
People in local neighbourhoods live in an environment of shared
confidentiality, referring to the inevitable diffusion of information
that helps shift secrets to shared knowledge, shared understanding and
shared safe intimacy, which is a confidential environment. Recognition
of this community capacity is an entry point to disciplined community
counselling, which can rapidly accelerate commitment toward prevention
processes by local communities, as well as to care for each other.
It is possible to counsel a community on the basis of shared
confidentiality, without HIV positive members of the group having to
verbally disclose their status, and this has been found to be an
effective environment for stigma reduction and normalisation.
The person centred nature of the confidentiality experienced in a home
can shift to issue centred confidentiality in a community discussion
which helps share responsibility and influences prevention in the whole
SHARED CONFIDENTIALITY – A PATHWAY TO STIGMA REDUCTION
4. Suffering, participation and faith
How can a health or other team enter the heartbeat, the soul, and spirit
of a community? Clearly, by invitation with appreciation of local
strengths, and belief in the capacity of local people to care (or love),
belong, change and hope. Yet also with an acknowledgement of spiritual
capacity inevitably linked to belonging to the future as well as the
past and present. This approach generates hope for quality of life,
allows for adequate remembering and continuity even with the reality of
accumulating loss and deepens the understanding that community and
relational health are indivisibly linked to spiritual health.
There is a great difference between participation and observation. On
the one hand it is possible to be sympathetic and to do things for
people even as an observer but this is insufficient for sustainable hope
to develop. HIV/AIDS is an issue that leaves problems with people -
problems that accumulate if unattended and problems that do not go away
from homes simply because a person has attended a clinic or a hospital
or because they have received a home visit from an outreach team.
People have to live with the epidemic - and “we” need to be inside that
experience, which is an ongoing conversation about loss, hope, and
therefore about desire for the future.
This is inextricably linked to a mysterious yearning for connectedness,
and for a future that is unseen as well as seen. It is speaking
therefore of the experience of faith - reaching out for something beyond
what human beings can touch and articulate, something bigger than we
are. Faith is about innate desire to touch the essence of creativity
and creation, and of relationship that can always be better than what we
feel it is at the moment, and that recognises people in a spiritual
situation, where God is, and where hope is glimpsed. Such faith is not
naive - it is realistically grounded in honesty, and recognition of loss
5. Some key operational research questions
(1) What are the characteristics of an integrated care and
prevention approach that allows for conflict resolution and results
in stigma reduction?
(2) Within the local community experience, how can personal faith be
explored, respected and affirmed as a fundamental strength for community
response and destigmatization?
(3) Regarding partnerships of the religious sector (with other
organizations), how can theological principles and identity be expressed
respectfully, and linked to practices that are encouraged by the
partners (such as counselling, community choice making in behaviour
change, harm reduction, family protection etc.)?
(4) What evidence exists that organizational response can be
accelerated by community participation approaches that involve people,
including leaders, from the religious sector?
(5) What is the impact of accumulating loss in families and
communities? How does faith and future hope interrelate with the
(6) How can capacity for shared confidentiality within groups be
linked to scaling up both care and prevention action and impact?
(1) Consultation with Christian Development Organizations and UNAIDS
for Collaboration on HIV/AIDS-Related Issues, Botswana (March 2000),
Journey into Hope
(2) 1st International Conference on AIDS and Religion, Dakar,
Senegal (1997) sponsored by UNAIDS, Geneva. http://www.unaids.org
(3) Report of the first cross-regional consultation of programme
facilitation teams (India and Asia/Pacific) (February 2000). The
Salvation Army International Headquarters, London, UK
(4) Xth International Conference on AIDS and STDs in Africa, 12 – 16
September 1999, Lusaka, Zambia, African Regional Forum of Religious
Health Organizations in Reproductive Health – an initiative to promote
opportunities for increased advocacy and experience sharing among
religious health organizations in Africa, prepared by International
Family Health, Parchment House, 13 Northburgh Street, London EC1V OJP
(5) UK NGO AIDS Consortium (February 2000). E-mail : email@example.com
(6) Available through the UNAIDS website - http://www.unaids.org
(7) Available from NGO Health Networks workshop on shared
confidentiality, February 2000. Networks for Health, 1620 1 Street
NW, Suite 900, Washington DC 20006, USA. E-mail: firstname.lastname@example.org