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Aids Awareness Week - The Faces of Aids

Learning about Health Promotion from Community AIDS Organizations

A. Introduction & Overview
B. Learning from AIDS Community Organizations
i) Principles,
ii) Issues,
iii) Approaches,
iv) Advice for HP
C. Synthesis -a model for HP work
D. Key References & Resources

A. Introduction/ Overview

There is so much to learn, and to do in our work in health promotion. What if we were all driven with the same time pressures, needs, diversity of people, scarcity of resources, passion, critical analysis
and commitment of community AIDS work? This week OHPE goes to the people doing vital AIDS work and asks - "What is your perspective? What should health promotion learn from your work? What can make a difference?" AIDS work is health promotion, although it may not be named as such by the people doing AIDS work. We shifted a point of view taken in papers and articles, that health promotion can guide the practice of AIDS work, to see if we can learn "how to do health promotion by practices in AIDS work" (Trussler & Marchand 1993).

AIDS Awareness Week (November 23-30) and World AIDS Day (Dec 1) has the evocative theme of The Faces of AIDS. When we began to prepare a feature on community based organizations (CBOs) working on AIDS, we wanted to learn about the less visible or "marginalized" communities who are tackling HIV and AIDS prevention. It is another step from last week's overview of "removing barriers - promoting inclusion, diversity and participation.

Rachel Smith contacted 14 AIDS organizations in Toronto, Ottawa, and London Ontario, seeking out groups who were focusing on immigrant and visible minorities, women, aboriginal communities and disabilities. Interviews were arranged with seven of these organizations, asking about their programs, their principles and mission, main issues, perspective and approaches, what health promoters, service providers and volunteers should learn/know about AIDS work, and key groups and resources they recommend. Each of these contacts received draft versions of this feature and resources listing for their comments. We hope that this approach of dialogue and exchange can be used in more features.

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Many health promotion and community health organizations are formed to provide a service, or to focus on an issue relating to the health and well-being of their constituency. Community Based Organizations (CBOs) working in HIV/AIDS, share that basic intent, however there are differences.

Their missions and guiding principles emphasize:
* empowerment of their community to make informed choices
* providing a safe environment, of respect, dignity, and integrity
* promoting the health and quality of life of people with a chronic (and likely terminal) illness
* member led by people who are HIV+ or living with AIDS
* working against discrimination of race, age, ethnicity, gender, class, caste, religion, sexuality, ability
and nationality
* work as much with their community on AIDS awareness as with service providers teaching cultural
sensitivity to their community

"we support the empowerment of individuals to make informed choices concerning lifestyles, support and treatment" Guiding principle of Alliance for South Asian AIDS Prevention (ASAAP)

Safe, Respectful Environment:
"We are committed to providing a safe environment that promotes the dignity and integrity of all people infected with and affected by HIV/AIDS." (ASAAP)

Health & Quality of Life Promotion
"To enhance the quality of life of Black people living with or affected by HIV/AIDS" Mission of Black CAP; "to enable people living with and affected by HIV/AIDS to make informed choices." AIDS Committee of London (ACOL)

Member Led:
"a member-driven agency, and all of our members are women living with HIV/AIDS" Mission Statement of Voices for Positive Women

Working Against Discrimination:
"We believe in the eradication of all areas of discrimination including those of : race, age, ethnicity, gender, class, caste, religion, faith, sexuality, ability, and nationality."
Guiding Principle of ASAAP;
"We acknowledge the presence and impact of racism, sexism, heterosexism, homophobia, classism, and other forms of discrimination on our lives,,," Philosophy of Black-CAP;

Teaching Cultural Sensitivity to Service Providers

"The Deaf Outreach Program (DOP) also works with hearing health care agencies to teach them about Deaf culture, teaching cultural sensitivity, and their responsibility to make their services accessible." Interview with Bonnie Benedik, Deaf Outreach Program

The Issues that community AIDS organizations work on might seem to be straightforward, but they are not always the ones that people in health promotion might expect. They include access, image, awareness and isolation.

Access - within the AIDS community, equal access (to services, research, information), respect and safety may be less available to women and immigrant communities. The issues are not always with
health care agencies.

"the main issue of the organization is to obtain equal access for HIV+ women. . there a lot of organizations run by gay men which do not recognize the particular needs of women, nor have the same experiences". Voices for Positive Women, interview

"A sensitive issue is gender. A male patient may not want a female interpreter in the room during his examination with the physican. And vice versa." Interview with B Benedick DOP

Promoting a Positive Image of people living with AIDS and HIV, and that people can live well for many years, is an issue with health promoters and with the general public.

"We are trying to promote a positive native image. walking towards health and coming back to the community that they want to be part of" (Native Child & Family Services of Toronto)

Awareness among their population, that AIDS can affect them
"Many of our people [Asian] think it is a Western disease and are not aware of the risk".

Geographic isolation - AIDS is not all in the metropolitan area
"It makes sense for HIV/AIDS centres and organizations to be located in the Ghetto of downtown Toronto for Gay Men because that is where the majority of the live." However for women, they are not centralized and may live in small communities and rural areas, making it harder to serve the population. (Voices for Positive Women interview with Sandy Crossgrove)

Perspectives and Approaches
Themes emerged in the interviews about approaches that work in these communities, and perspectives that are needed in the work that these organizations do.

A strong focus on a holistic approach to a person's life is important - their health depends on considering housing, income, supports, faith and culture, as well as treatments and prevention.
Community and community development is integral to the work, but is an approach that is constantly developing in the AIDS communities. One problem is cohesion, the things that build a common sense of action - with widely divergent groups, varying from sexual identity, to
gender, culture, country of origin, language, to differing abilities - the commonality is the disease, not the community of the affected. A spectrum of differences may make a "diverse community" of AIDS organizations but also separate communities. The bridges in approaches
are found in each organizations concern about sensitivity and cultural/community relevance of their approaches.

In the Gay Men's Education Network (GMEN) "the members of the network try to educate one-another about the differences. ("learn from each other") Most the training is done informally, but they are trying to do more formal cultural sensitivity workshops. . may not be of [each others] ethnic background but is sensitive to their needs and tries to
appreciate the differences. This makes us better educators to know about family traditions, community perceptions, rituals, and their values about per-marital and extra-marital sex."

Bonnie Benedick of DOP notes that community development is the major approach - they listen to what the community needs and takes direction from them. It is a very tight knit community, where Deaf people (living with HIV/AIDS) cherish their own members.

Empowerment is central theme, a subject of discussion about power and control, and the loss of both with the onset of chronic illness. As a result, empowerment, enabling and approaches that support greater self-detemination are strong aspects in AIDS CBOs approaches.

Voices for Positive Women uses the empowerment model - providing emotional support by creating a safe environment; creating a relationship and networking; providing mentorship to help with learning and developing their confidence and skills; and providing money/support

Education/ Capacity-Building is important approach that is considered central to AIDS work - although the focus may differ. From "train-the-trainer", offering educational workshops to Deaf teachers, or cultural sensitivity training to health professionals (ACOL); to using talking circles; to support for individuals to reduce their risks, gain confidence about treatments and options, to health communication methods - the range of "education" is as diverse as the communities.

Harm Reduction approaches are taken in several AIDS organizations, to minimize risks taken by promoting the use of condoms, and safer-sex practices. The HIV/AIDS messages are combined with a number of messages, such as health and addictions/sobriety; and are not separate programs or activities, but part of daily life. For the aboriginal community, the integration of the AIDS communications into community life is key.

In the aboriginal community, they use talking circles [see key references] to promote communication, positive images of their culture, and ceremonies directed towards health and taking care of one-self,
including the notion of responsibility. (Interview with Kenn Richard, Native Child & Family Services)

Non-threatening, "passive" communications helps with some education approaches, such as condom inserts into wallets for black youth, or approaches in bathhouses and parks in 'risk environments' -
taking education into new venues. (G-MENs interview with P. Evans)

Voices for Positive Women focuses on Capacity and knowledge,. They want to increase women's skills, knowledge level, confidence level, about drugs/treatment and complementary Westernized medicine so they can make their own choices, be able to take control for personal life choices (having relationships, being able to tell you family members and understand why they may not understand).

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Sensitivity to communication and culture, Flexibility, Support and Respect for the community and the work that has been done - these are the main messages for community health promotion work in AIDS. Community AIDS organizations have repeatedly noted that there is a huge training need among health professionals, to help improve basic understanding of the issues of AIDS, and to change attitudes and prejudices. For some health promoters, a move from a factually oriented, information-giving process, to one which recognizes the importance of sensitivity, attitudes, support and feelings, may be a challenging and difficult shift. In respect for the urgency and time pressures that these AIDS CBOs are experiencing, health promoters should not be expecting to invite someone from the AIDS community to sit on a committee, or take part in an intervention, without giving back to the group. "Be aware of why you need or want a HIV+ to participate. Don't ask us what we need if you can't follow through." (Voices for Positive Women interview)

Be sensitive on how a person communicates by asking what they prefer or how do you usually communicate (DOP).
Be willing to make an effort to assist the person even though there are cultural differences.
"Sometimes we do things that are offensive, that we are not even aware of doing". Be culturally sensitive. (Black CAP)

How sensitive the subject is to this culture (Asian). The topic is taboo because the culture/ religion/community are tied together and they don't talk about sex. People are often stigmatized and
alienated if their community finds out. There is relatively little or no support from the community.

Suggests being sensitive about how important confidentiality is to someone in this culture about HIV/AIDS. "A person needs to feel secure." (ASAAD)

There is someone from the culture to help communicate the message. Understand there is a different cultural context. (Native Child & Family Services)

Be flexible and pragmatic to find feasible, do-able solutions, which can consider political constraints and the social climate. (Nutbeam & Blakey 1990)

Talk to the people in a way that will best be heard and not how it will benefit you. This approach needs you to be flexible and fluid. (Black CAP)

Provide support for child care, travel, food, and time. Remember many of the women are not able to work. (VFPW)
Develop a relationship early on, listen to her needs and respond, be there for the long term, "This disease draws out and people's lives change over time".

Pay respect: Provide incentives to participate, many times it is only a "take" relationship. The women have expertise and should be paid just like the doctors and nurses who attend the roundtables. Their
organization supports them while they are at the meeting. (honorariums) (VFPW)

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From "Taking Care of Each Other"

The points made in Perspectives and Advice for health promotion practice are reflective of health promotion theory and strategies for action (such as the Ottawa Charter for HP), and suggest a loose
framework. We began these interviews and this feature with the assumption that AIDS groups are doing health promotion now, and have much to teach the field about community work, empowerment,
powerlessness, participation, support and education, as well as supportive environments. The paper prepared by Terry Trussler and Rick Marchand of AIDS Vancouver in 1993, "Taking Care of Each Other" offers a very appreciative and critical review of health promotion, and proposes a way of refining the practices of AIDS work. We would like to turn that around to use their model for HP practice.
Taken as a whole, the model proposes "taking care of each other" as the basic theme guiding the evolving practice of community-based AIDS work. An internal strategy is proposed for conduct within an organization; and an external strategy for effects of this work on others in the community and environment. Here, we note the external strategies only, and invite further commentary.

* self-care - on an individual level, embrace both prevention and health of people with chronic illness.
On a community level, shift attention to cultural beliefs, pride and respect

* caring communities - community organizing is a process of continuous learning, an agreement
among participants to work together for knowledge and empowerment

* professional care - shared understanding about establishing and supporting conditions of health.
Health professionals are a target audience for learning about AIDS

* sustaining services - a range of programs for changeable situations of illness and income loss, including basic support of food, cleaning, transportation

* support networks - friends, family, volunteers and professionals - recognizing the value of personal relationships in health

* social advocacy - policy, attitudes and practice changes are needed in healthcare providers, social workers and many others

* Focus - messages need to be intentional and focused on desired action about what the audience is to do.
* Target - good information is needed about the character, culture and context of a target audience.
* Influence - using mass media is not enough; influence requires face to face, peer to peer and much more focused on changing power

* community driven - the work of organizing people, forming coalitions and forging partnerships is a movement with far reaching effects.

* advocacy & partnerships - setting up partnerships with political forces and decision-makers to exchange information and advocate for the community.

* empowering leadership - a fully empowered community organization has leadership that gets its strength from the community's power. It is the work of health promotion to enable this leadership.

The way to approach this model is to think of it as a means of evaluating health promotion practices.
Ask to what extent a particular initiative embraces these aspects.

Is the initiative community driven?
Does the initiative support and involve those most affected (ie living with HIV)?
Does the initiative invite opportunities for partnership?
And so on. Refining our work never ends.

Alison Stirling and Rachel Smith


The true "Key Resources" for this feature are the Community AIDS Organizations and people who contributed their insights and resources of their programs. They are listed in the next message with brief descriptions of their programs; followed by the resources that each respondent suggested for OHPE readers. Below are the 3 papers that assisted in the framing of this feature.

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Trussler, T. & Marchand, R. (1993) Taking Care of Each Other: Health promotion in community based AIDS work. AIDS Vancouver

Through extensive participatory research in community based organizations working in AIDS, the authors explored what health promotion means in community AIDS work. They undertook an inventory of key health promotion concepts and engaged key informants in interviews and critical analysis of issues and conditions in their work. They found that people in AIDS work are practising health promotion without naming it. In the synthesis, they propose a model for refining AIDS work informed by HP research, theory and practice. The report concludes with an outline of a specific targeted action that AIDS Vancouver initiated as a result of the paper.

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Nutbeam, D. & Blakey, V. (1990) "The concept of health promotion and AIDS prevention. A comprehensive and integrated basis for action in the 1990s" Health Promotion International. V. 5 #3, Oxford University Press.

This paper examines programmes directed towards preventing HIV infection from a health promotion perspective. The five action areas for health promotion set out in the Ottawa Charter are each considered. Examples of good practice are highlighted, and the importance of learning from experience gained from other health promotion programmes is emphasized. The authors recommend that less effort be put into high profile, mass media activity, and that more comprehensive approaches to preventing HIV infection are adopted. Pragmatism and flexibility
in gaining public and political support are also encouraged.

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Erben, R. (1991) Health Challenges for the Year 2000: Health Promotion and AIDS Health Education Quarterly, vol. 18(1): 29-37 (Spring)

Abstract: This article examines how the concept of health promotion can be of value to professionals who have a special responsibility to promote the health of young people and adults. What does it mean to address the issue of AIDS within the broad concept of health
promotion? Health promotion needs a comprehensive strategy of action oriented towards the development and implementation of various measures concerning the prevention of HIV/AIDS.
The five activity areas of the Ottawa Charter for Health Promotion provide a framework to introduce concrete examples of good practice. This is the framework of action that the health promotion concept can provide.

More Resources in next message - OHPE #82.2 including descriptions of AIDS organizations interviewed for this feature.