Support Groups Build Trust among HIV-Positive Pregnant Women and Mothers
By Julie Karfakis and Mzondwase Mwanza
Lucy Mang’anda* received an HIV test when she was pregnant with her first child when she visited the Chilomoni Health Centre in the Southern Region of Malawi for antenatal care. The results shocked her. “I tested positive. I was devastated and terrified at the same time,” Lucy explained. She was immediately referred to mothers2mothers (m2m), an African-based NGO that provides education and support to women at Chilomoni Health Center and 100 other health facilities in Malawi, where she learned she could return for further guidance and participate in a weekly support group for HIV-positive pregnant women and mothers.
“I went home that day and failed to gather enough courage to disclose the sad and tragic news to my husband,” Lucy said. Since the idea of telling her husband about her status was too terrifying, she decided she must go back to the hospital to see the Mentor Mothers from mothers2mothers.
When she returned, the Mentor Mothers counseled her on disclosing her status to her husband and provided her with much needed emotional support. With encouragement from the Mentor Mothers and her peers in the m2m support group, Lucy regained her confidence and managed to share the news with her husband. Lucy noted, “If it wasn’t for the support groups and the Mentor Mothers, I would not have disclosed my status to my husband.”
In Malawi, m2m offers group and one-on-one support provided by women who intimately understand the social and cultural challenges of living with HIV — HIV-positive mothers from local communities. By sharing their own experiences with HIV, Mentor Mothers are able to create a safe environment and develop intimate and trusted relationships with the women they serve. Support groups facilitated by Mentor Mothers provide psychosocial support, general health and treatment education, and vital information about the prevention of mother-to-child transmission (PMTCT) to women and male partners. In most facilities where m2m operates, the support groups are held once a week and are open to both antenatal and postnatal clients.
The benefits of linking expert clients (such as Mentor Mothers) to support groups was studied in Mozambique, and it was found to help improve retention and adherence to ART (antiretroviral treatment). Participants in the study reported that the group provided a “means of encouraging greater patient responsibility for their own health and building and reinforcing social networks and peer support.” It was also found that group counseling may increase the efficiency and impact of expert clients.[1]
After disclosing her status to her husband, Lucy was surprised when her husband was easily convinced to go for testing. As feared, he also tested positive. Lucy happily told me her husband has been supportive and takes a leading role in managing their health. “He is always cautious that I take my medicine and encourages me to attend support group meetings.” Lucy continued her praise of the m2m support groups and shared her belief that the groups have saved the lives of many women. “To most of us, it is such a huge blow to come to terms with the fact that we have HIV. We become so depressed and even have thoughts of committing suicide. But through these support groups, we are encouraged by the personal stories shared by other women and Mentor Mothers. Now that we have seen others in the same shoes as us, living positive, fuller lives, we have hope. We have learned that we too can live healthy lives, despite our status.”
Mentor Mothers face many challenges in their work, but through the support groups, their work is made easier and they are able to make a greater impact as they meet and create bonds with other HIV-positive pregnant women and mothers. One Mentor Mother at Chilomoni Health Centre told me, “We always open up to our clients about our status and even share our experiences of motherhood. This gives them hope and allows them to open up to us. Some women come here and they have lost all hope, but when we share our stories and tell them that they can also give birth to a healthy baby, they are encouraged and realise life is not over.”
Lucy’s experience is testament to how important these support groups are to HIV-positive mothers through pregnancy and beyond. She first attended a mothers2mothers support group as an antenatal client and continues to see the value in these interactions with other clients. Throughout pregnancy and following delivery many women travel to a health facility once a week to speak with Mentor Mothers and other HIV-positive mothers in a support group. With organisations like mothers2mothers implementing valuable activities that assist community members and build trust among the beneficiaries, women like Lucy can be empowered to live healthy lives themselves, and allow them to give their children a fighting chance.
*Identity shared with permission.
[1]Decroo, T., et al. “Distribution of antiretroviral treatment through self-forming groups of patients in Tete province, Mozambique.”Journal of Acquired Immune Deficiency Syndromes.2011 Feb 1;56(2):e39–44.
Julie Karfakis and Mzondwase Mwanza worked together during Julie’s GHC fellowship at mothers2mothers in Malawi from 2014–2015. All GHC fellows, partners and supporters are united in a common belief: health is a human right. There is a role for everyone in the movement for health equity. Join the movement today.
