An infant feeding resource co-created with HIV positive mothers

We sat down with the Teresa Group’s New Moms Group and together we looked at existing resources for HIV positive mothers. The initial intention was to discuss their opinions of the images, styles, and colours. However the participants wanted to go much deeper. They wanted to talk about their relationships to these resources.

“One set for HIV negative mothers, one set for HIV positive mothers.”

The women spoke about having feelings of stigma and shame upon learning of their positive HIV status, and later experienced guilt and anxiety about being pregnant. Some had tested positively for HIV at the same time they tested positively for pregnancy. Resources about pregnancy were often packaged with other HIV/AIDS information, making it difficult to think about the baby’s health without raising feelings about the mother’s HIV status.

Collage is an incredibly powerful form of self expression. It is far less intimidating than drawing, and it allows creators to re–mix the pieces of a current story into an entirely new narrative. The participants were asked to cut out and remix images and text from the resources we’d just discussed to design a cover for our infant feeding publication. As we cut and pasted, we talked about what kind of resource the participants wanted. They told us it should be discreet so they could comfortably read it in public without inadvertently disclosing their HIV status. They were tired of seeing starving and sad babies symbolizing associated with HIV – their own babies were happy, healthy and chubby. They wanted other HIV positive parents to know that their babies would be okay.

“It should be about the baby’s health, not the mother’s HIV status.”positive mothers.”

Unlike the resources we looked at, most of the collages that the participants created featured only babies, they had cut the parents out. They wanted the imagery to focus on a healthy, happy, chubby baby (which is what the women were most concerned with) rather than a mother (which is what the public health experts were most concerned with).

Instead of using fear and guilt to persuade, the participants were thinking aspirationally. They wanted to say that you can raise a healthy baby on formula. They focused on growth, health, and potential rather than HIV transmission. They also wanted the resource to speak to an HIV negative audience. By framing HIV status as just one of many reasons why a parent might choose to formula feed, they hoped the publication would address stigma around formula feeding.

One of the participants titled her collage “Is Formula Good For My Baby?” The response was unanimous – that would be the title of the resource. The working title had been “Feeding your baby when you’re HIV positive: do you have all the facts?” The title captured simply and beautifully what expectant parents who are HIV positive want to know.