Two infants drawn on beige background

Co-designing an infant feeding resource with HIV Positive Mothers

with

CATIE, The Teresa Group, Women's College Hospital

 

Photo: Cover of “Is Formula Good for my Baby?” — an infant feeding resource for HIV positive parents. The resource was designed with CATIE, Women’s College Hospital, The Teresa Group as well as HIV positive mothers.
Front cover of the resource. Photo by Una Lee

The Need

Having a baby when you are HIV positive can give rise to some complicated feelings, especially when it comes to making decisions about what to feed your baby. In Canada, doctors and public health experts agree that breast/chestfeeding increases the risk of HIV transmission and recommend feeding the baby formula. However, many of us have heard that breast/chestfeeding is healthier than infant formula. This can cause confusion as well as a sense of shame and stigma. And Also Too was asked by CATIE to design a resource that would clear up the confusion, address the negative feelings that formula feeding can evoke, and point to resources that could offer support. The resource needed to do this in a way that is non-stigmatizing, trust-building, attractive, and memorable.

Photo: Collage materials, including glue, tape and scissors as well as cutouts of baby pictures on a desk.
Collaging with the Teresa Group’s New Moms Group. Photo by Una Lee

Storytelling

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.

 Photo of two collages by a project participants. Participants were asked to cut out and remix images and text from the resources to design a cover for an infant feeding resource for HIV positive parents. In the first collage, the text at the top states: “is formula good for my baby?” In the centre of the collage is a magazine cutout of a picture of a bottle and a can of powdered formula with a hand holding a spoon scooping out the formula. At the bottom left of the collage is a magazine cutout of a mother holding her baby. The mom is nuzzling the baby and smiling. The baby is sleeping. The second collage shows an image of a parent feeding their baby through a bottle in the middle of the page. The red text at the top says: Infant Formula Feeding. The red text at the bottom asks: Is breast best? The red text towards the bottom states: eg. formula is as good as breast.
Participants’ collages. Photo by Una Lee

Collaging a Counter-Narrative

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.”

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).

Participants’ collages. Photo by Una Lee

Re-framing

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.

Photo: Cover of “Is Formula Good for my Baby?” — an infant feeding resource for HIV positive parents. The resource was designed with CATIE, Women’s College Hospital, The Teresa Group as well as HIV positive mothers.
Photo: Two-page spread from “Is Formula Good for my Baby?” — an infant feeding resource for HIV positive mothers. On the left is a page with text. The right side of the spread is an illustration of a baby with a large text inside a spilled milk shape that reads “formula provides the nutrition babies need to grow up healthy and strong.”
Photo: Two-page spread from “Is Formula Good for my Baby?” — an infant feeding resource for HIV positive mothers. The right side of the spread is filled with text. The left side is an illustration of a baby being held up by an adult. Only the arms of the adult are visible. On the illustration is large text reading “It’s normal to have different feelings about the right way to feed your baby. Talk to someone you trust.”
Photo: Two-page spread from “Is Formula Good for my Baby?” — an infant feeding resource for HIV positive mothers. The spread is filled with text on both sides. In the middle of the spread is an illustration of a baby’s hand holding the forefinger of an adult hand. Two spilled milk shapes are on either side of the page spread. Inside the left hand shape the text reads “Your baby’s immune system will build over time, with or without breastfeeding.” Inside the right hand shape the text reads “You can bond with your baby in many ways.”