The perinatal HIV team of the Academic Medical Center (AMC) has been training midwives and midwifery students in the Netherlands on all aspects of HIV testing and pregnancy for the past 19 years. Medical and psychosocial support has been offered
with a focus on the needs of HIV infected women and their children. However, feelings
of isolation , especially those of migrant women, could not be addressed until just over nine years ago, when the AMC started a collaboration with Positive Women of the World (PWW), an organization by and for HIV infected women. Since then, support for HIV positive women
improved significantly. Isolation was broken and empowerment was achieved through sharing experiences. Even the most vulnerable women, those who live illegally in the
country, could benefit greatly from this care.
PWW is a NGO founded and run by migrant and Dutch HIV positive women, which supports female immigrants living with HIV and their children. PWW's goal is to improve the quality of life of women living with HIV and their families, so that they will be able to find a place within the Dutch multicultural society.
PWW's Project "Immediate Intervention" has been able to reach its target group efficiently in collaboration with the Amsterdam Medical Centre. In a personal and informal setting, positive women are able to express emotions about the situation and ask questions, after which further support is provided. Additional monthly activities (see “other activities”) provide a place for women to share their experiences in order to break through stigma and isolation. By connecting medical care, on one hand, and psychosocial support by HIV positive women at the site of the hospital, on the other hand, absolute confidentiality is guaranteed. Furthermore, valuable additional knowledge of the social and medical problems these women face, is obtained and shared confidentially.
Positive Women of the World was founded in 2004 by Sylvia de Rugama, a Mexican
refugee who herself lives with HIV.
In 2012, around 21,000 people in the Netherlands were diagnosed as HIV positive, 78% of whom are men and 22% women. More than half of the heterosexually infected patients are women. In 2006, women were about 7 years younger when diagnosed with
HIV in comparison with men. The majority of the men were of Dutch origin, whereas
most women originated from Sub-Saharan Africa. In total, 749 women became
pregnant until 2006. From 2004 HIV testing in pregnant women is part of the national first
trimester perinatal testing procedure. Just over 235 children (under the age of 13) are living with HIV and around 90% of them have at least one parent who originates from outside the Netherlands.
(Source: HIV Monitoring Foundation 2006, 2012).
Health care is viewed as a basic human right, regardless of nationality, legal position,
sex, race or religion. PWW focuses especially on maternal care and childcare. Because of stigma and social isolation, pregnant women living with HIV often have to deal with their pregnancy without the help of family. The volunteers of PWW support the women throughout their pregnancy and sometimes even during labour.PWW and the Amsterdam Medical Centre both follow a humanistic approach, which affirms the dignity and worth of all people based on the ability to distinguish right from wrong by appeal to universal human qualities.
Therefore PWW believes that the provider of psychosocial support should be a non-governmental, non-political and non-religious organization with diverse and useful partnerships within the medical community, welfare bodies and local minority advocates.
In reaching HIV positive women and their families PWW has had to adopt a personal
and trustworthy approach in line with the interventionist framework. This approach entails the ability and constant disposition to troubleshoot and resolve emergencies and crisis. In this fashion PWW manages to overcome bureaucratic limitations through which it is impossible to respond to the immediate demands of a constantly changing migrant population.
As one of the biggest "migrant friendly hospitals", the AMC provides care for all patients regardless of their race, gender, nationality or legal position. Furthermore, the project places a strong emphasis on maternal health, with the goal of obtaining wellbeing for both mothers and children and providing tools for a healthy beginning and future development. The project's guiding principle is the implementation of the GIPA principle (Greater
Involvement of People living with HIV and AIDS).
· Empowerment and guidance of women and their families on better understanding of health issues.
· Sharing personal experiences of coping and living with HIV diagnosis.
· Encouraging and facilitating the creation of new support networks in minority communities, for overcoming stigma and isolation.
· Stimulating further integration into Dutch society.
Migrant (pregnant) women are reached in a neutral territory inside a hospital with 100%
confidentiality, after being referred by medical professionals with their informed consent. During the integrated outpatient clinic of the obstetrician, pediatrician and internist, customized personal care is provided, according to nationality, ethnic and
religious background and solely by women who are themselves living with HIV. PWW
works in close cooperation and understanding between the patient, the interventionist,
peers, coordinators and the medical personnel. PWW is equally involved in the decision-making process concerning the patient.
Furthermore, PWW reaches HIV positive immigrants through fieldwork in refugee
centres, churches, shelters and schools. For this purpose PWW works in close
collaboration with the medical organisations in refugee centres (MOAs) and HIV
counselors throughout the Netherlands. Additionally, PWW gives prevention
workshops in refugee centres and other organisations.
PWW takes a flexible approach towards the quick changes in the migrant population
and consequential personal problems of women living with HIV. The organisation
strives to be non-bureaucratic and pro-active in dealing with existing and future
problems and crises in the field. Geographically speaking, this means that PWW
provides care where it is needed. The organisation focuses mainly on the Amsterdam
region, but is ready to intervene nationally where urgent help is needed.
Following the "Immediate Intervention" PWW provides further care and activities. One
of the essential activities is regular meetings in which HIV positive women and their
children meet and share experiences. In this way they are able to create a new social
network which makes it is easier for the women involved to cope with HIV and
its treatment in their daily lives. Specific activities are organised during these
meetings to encourage contact between the women, such as celebrations, film watching,
drama, music and health education.
A migrant and minority population maximizes its use of available medical and social
benefits as a result of an outreach strategy of connection at the site of the medical treatment.
In the past it was challenging, sometimes impossible to communicate in a more intimate
fashion with the patient on sensitive subjects like sexual behaviour, motherhood,
HIV status disclosure, traditional medicine and daily life habits. In practice, we find migrants and minorities to be more receptive and open when they are far away from their place of
residence and their community. In the context of newly created networks of HIV positive women these issues are more efficiently addressed.
Generally speaking, NGOs working within the field of HIV and AIDS work outside the scope of the medical care. In this way valuable knowledge, for example about treatment,
cultural differences and psychosocial circumstances, is often lost. By connecting the support given by the NGO to the medical care, the hospital staff and the providers of psychosocial support, benefit greatly in sharing their knowledge and exchanging information. This alternative approach has proven to be a breakthrough in dealing with the challenge of reaching the target group and addressing sensitive subjects. In this way, the medical care and psychosocial support are maximised and more effective. www.positivewomenoftheworld.org