Kudziulura: The power of disclosure in coping with an HIV diagnosis

Sigele Kalino (in blue), a mentor mother at work. 
© UNICEF Malawi/2017/Rebecca Phwitiko

By Rebecca Phwitiko, UNICEF Malawi

A woman sits in a circle with mothers and pregnant women. They are at a health centre. She smiles as she speaks to the women.

“You too can live a happy fulfilling life like us,” Mentor mother Sigele Kalina says. “An HIV diagnosis still feels like a death sentence to many. My job is to counsel and encourage HIV positive mothers and pregnant women.”

Sigele Kalino has been doing this for nine years. She and five other mentor mothers work at a UNICEF-supported mothers2mothers (m2m) organization site at Area 25 health centre in Lilongwe. Thirty to forty new mothers turn up every day. First, they attend a pre-test group counselling before getting tested. After that the women return for one on one counselling sessions with the mentor mothers. If the result is negative, the women are asked to come back for another HIV test after three months. If found positive, pregnant women are encouraged to stay in the mentor mothers programme throughout pregnancy until the baby is two years old.

“When we talk to the HIV positive women we start from the point of disclosure. My own openness to disclose my status to these women who feel like their lives have come to an end gives them a sense of hope, that if I can do it then they too can” explains Sigele.

One on one sessions give Sigele more information about the client’s unique situation. 
© UNICEF Malawi/2017/Rebecca Phwitiko

Revealing yourself

In the local Chichewa language, the word for disclosure is “kudziulura” and you hear it a lot when you speak to the mentor mothers. It is an important aspect of their work and engagement with HIV positive women in the programme. Kudziulura literally means revealing yourself. Sigele says it is a critical step in accepting one’s diagnosis, disclosing it to loved ones who can be instrumental in promoting adherence to medication.

“Adherence is even more critical for HIV positive pregnant women, to avoid HIV transmission to the child,” she adds.

Sigele herself successfully delivered two healthy babies who are both HIV negative following similar steps of avoiding transmission. She was supported by mentor mothers just like herself. This empowered her to support other women going through similar experiences.

At the clinic, Sigele supervises five other mentor mothers. Together, they see about 35 new clients every day, and 7 or so subsequent clients. Mentor mothers Dorothy and Juliet have similar experiences. They used to attend a support group and later saw an advert calling for those interested to apply for mentor mother positions.

Sigele (second left) and her colleagues; mothers standing for mothers.
© UNICEF Malawi/2017/Rebecca Phwitiko

Access to treatment

M2m is one of UNICEF’s partners within the Optimizing HIV Treatment Access project. The project is funded by the Governments of Sweden and Norway. Since 2013, UNICEF has supported m2m’s work in providing psycho-social support to pregnant women and their families. This has promoted uptake of prevention of mother to child HIV transmission (PMTCT) services including getting HIV positive mothers to adhere to their medication.

“Around 9 percent of adults in Malawi are HIV positive, so the epidemic is far from over,” UNICEF Chief of HIV and AIDS Judith Sherman says. “Supporting pregnant and breastfeeding women who are living with HIV to adhere to treatment, for both their own health and to prevent HIV transmission, is critical. The mentor mothers have demonstrated how effective peer support can be.”

Sigele and her colleagues use manuals which cover various topics as they engage with their clients. These include starting early antenatal care, getting tested for HIV, disclosure of status, practicing safe sex, adhering to retroviral therapy and exclusive breastfeeding. A day before, they prepare the day’s session, jotting down a few notes for reference.

A client appointment diary helps them track the women in the programme. The mentor mothers check the facility’s records and follow up with clients who miss their appointments. Sigele feels that the work they are doing with the women takes some of the pressure off frontline health workers.

“We are in close contact with the women so we are able to remind them to get their viral load checked six months after starting the anti-retroviral therapy, and other important things,” she says.

Because issues of disclosure are sensitive, they require a lot of time with each woman. Frontline health workers don’t have enough time to do the counselling so the facility relies on the mentor mothers to encourage the women to disclose.

For Sigele, it is a rewarding experience to support HIV positive women throughout their pregnancy, culminating — with hard work and a bit of luck — in the delivery of an HIV negative baby. That is the perhaps the greatest reward imaginable.

A happy Sigele after a good day’s work.
© UNICEF Malawi/2017/Rebecca Phwitiko

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