The Positive Sisters is a successful, unique peer project designed and managed by ShivA. The project matches and supports trained HIV-infected migrant women from Sub-Saharan Africa or the Caribbean, ‘Positive Sisters’, with other HIV-infected migrant women. Positive Sisters support migrant women who encounter difficulties in living with HIV in the Netherlands. As a role model, the Positive Sister helps women to break through self-stigma and social isolation and empowers them. Because of the support, women become compliant to their treatment. The holistic approach of the Positive Sisters project makes it distinctive to many other peer projects: “I will live! I take my medication! I continue with my life; HIV is not the end!” are the three pillars of the Positive Sisters Project.
Challenges of a HIV-positive female migrant
Research has shown that migrants experience numerous (additional) challenges in accessing HIV care and treatment. They may face discrimination, social exclusion, language barriers, and services that are not culturally sensitive. Additionally, limited knowledge of HIV makes migrants vulnerable to improper HIV treatment. Furthermore, migrants can be limited in seeking HIV care at an early stage, or may even be unable to access care due to numerous obstacles at policy, provider and patient level. Particularly, undocumented migrants are at risk of not seeking HIV care as a result of persistent problems with living and working conditions. Though most HIV-positive migrant women living in the Netherlands receive clinical care from HIV nurses offering medical and psychosocial support, addressing feelings of isolation, (self-)stigma and improving their perspective of the future has proven to be challenging. Being dependent on their mothers, children are equally affected by this.
The Positive Sisters project
The Positive Sisters project was designed in 2011. Since its inception, more than 180 women have been supported by their trained peers. The Positive Sister functions as a role model for the woman she is supporting. She does not give advice but gives perspective and information aimed at building self-confidence and having a conversation at an equal level, as opposed to talking to a white HIV care professional. The Positive Sister supports the woman by sharing experiences, life’s wisdom, warmth and assurance that the woman will be alright. The women can talk with the Positive Sister about any issues regarding a life with HIV, including the judgmental or empowering role of faith from an African or Caribbean perspective, which includes the belief in spirits and ancestors.
To become a Positive Sister, women follow a six-day course from ShivA’s trainers. Training topics include knowledge training regarding medical, psychological and social aspects of HIV, the Dutch health care system and other Dutch social systems; communication and counselling skills and knowledge and skills regarding ethical behavior and confidentiality. The training emphasizes on the fundamental principles of the project: active listening and supporting to speak up, not taking over the problems and not to advise, but to work on self-confidence of the migrant. Additionally, ShivA aims to empower the Positive Sisters themselves with specific trainings, reunions, special days for HIV-positive migrant women from Sub-Saharan Africa and the Caribbean, and intensive support during the match with their peer. The target groups of the project is not only the women supported by Positive Sisters, but also the Positive Sisters themselves.
Women who require a Positive Sister are nominated by their HIV nurse. ShivA, represented by the project coordinator, carefully selects a Positive Sister matching the profile and the specific challenges the woman encounters. After connecting the woman and her Positive Sister, the project coordinator or one of the colleagues, keeps contact with the Positive Sister to support her and reminds her of the project’s fundamental principles. The Positive Sister and the women she supports meet at places convenient to them, call, email and use What’s App to stay in touch. The contact focuses on the themes “I will live! I take my medication! I continue with my life; HIV is not the end!”, which represent issues such as empowerment, self-esteem, stigma, acceptance and treatment compliance.
The far-reaching effects and impact of the Positive Sisters
A match has a duration of between 6 months and 1,5 years. Research on the effect and impact of the Positive Sisters project found the project to be beneficial in various ways:
1) The Positive Sisters help women to develop confidence and self-esteem, and become more empowered to live with HIV in the future. Women supported by a Positive Sister feel good energy achieved through the sharing of personal problems, and by taking them out of their isolated and depressive situation. The message that comes from the Positive Sisters is powerful; to change perceptions of HIV, its associated stigma and future perspectives in other HIV-positive women living in the Netherlands. Positive Sisters played a role in helping other women to accept their life with HIV by sharing their own stories and experiences with regards to acceptance of their HIV status. Also, they shortened the process of HIV acceptance among the HIV-positive women. By sharing their own experiences in having disclosed their HIV diagnosis to other people, the Positive Sisters help other women to also disclose their status to their family and friends. The Positive Sisters project gives the women hope for their future and their life. Some women start with education, search for a job or start a relationship and a family. Women supported by a Positive Sister regularly become a Positive Sister themselves.
“I used to worry a lot. I thought, does this happen because I am in a foreign country? Far away from home and have nobody? Now, I don’t panic like I was years ago. With her [the PS] I am comfortable. Now I know myself, and it [her HIV status] is slowly getting a place in my heart. She [the PS] makes that I can talk about it.” – woman supported by a Positive Sister
- “The Positive Sisters are really filling the need especially for this group of women because they are so scared of being stigmatised that they will not tell anybody about their diagnosis. So they cannot share with anybody and it’s a heavy load to bear for them and sometimes it causes a depression. The Positive Sisters are really helping”. - HIV doctor
- 2) The Positive Sisters were found to be an important additional help to health care providers in providing culturally appropriate psychological support to the specific group of HIV-positive migrant women. The Positive Sisters have the distinct feature of being able to understand the culture of the patient, which causes the health care providers to consult the Positive Sisters sooner than psychologists. It appears that the same information from Positive Sisters and health care providers is received differently by the HIV-positive women. Acceptance of their HIV status motivated the women to engage in HIV care and treatment. After they came into contact with the Positive Sisters, HIV-positive women consult health care providers only -and actively- for illness-related issues. Health care providers often see a change from a subdued, timid person to an empowered patient addressing specific themes.
- “When they [HIV-positive migrant women] became stronger you can call empowered, they are asking less to me and then they are only visiting me for illness related issues. In the beginning they ask me basic things, when they have a quick introduction with the Positive Sisters they can ask them”. (HIV nurse)
- 3) The Positive Sisters contribute to treatment compliance in HIV-positive migrant women. The understanding of the Positive Sisters towards other women and their problems facilitates good adherence to treatment, also among women who are previously non-compliant. Positive Sisters work with the women to take away any barriers, like not willing to live and fear of someone seeing them taking their medication, which in turn makes the women motivated to take their medication. Positive Sisters change the role of women’s faith; instead of a judgmental, blocking role, faith becomes positive and supportive to the extent of women becoming compliant to their medication. Because of their healthy appearance, the Positive Sisters usually acts as an example for the other women and changes their perceptions of living with HIV, which gives them the courage to (start and) continue taking medication.
- “There was a young mother with children who was not able to take the medication all the time (…). We could not convince [her] and it did not work out. Then, we asked help from the Positive Sisters. First, she was afraid (…). Now, she really feels comfortable and she is so happy that she sees now how important it [the medication, red.] is for her life, for her children.(…) Now I really know that she is not going to stop her medication anymore” – HIV doctor.
- “Instead of the medicine reminding me of having HIV; it is said that the medicine reminds me that I am still alive and that I can have children.” – woman supported by a Positive Sister
For more detailed information on the Positive Sisters project, please download the description of methodology.