The Maternal Role in Feeding Children With Down Syndrome Within Family and Societal Contexts: A Qualitative Study

Oral-Motor Feeding Challenges

Seventeen participants described oral-motor feeding challenges their child with DS experienced related to difficulties with chewing, swallowing, and choking. Thirteen participants described how their children with DS had challenges chewing thoroughly and/or overstuffing their mouth with food. Participants described extra steps they took to prevent overstuffing and choking, such as cutting their child’s food into small, bite-size pieces. Three participants’ children had a history of aspiration, and three participants described choking incidents their children experienced that required urgent intervention including the Heimlich maneuver and calling 911 for emergency help. Other children experienced more mild symptoms related to choking and overstuffing. For one participant with a 7-year-old child with DS, their child’s oral-motor challenges related to chewing and swallowing resolved over time. However, for other participants, their child’s oral-motor challenges were persistent as the child grew older. Mothers whose children experienced choking described the lasting impact that previous choking incidents had on their mindset, stressing the need to always watch their child closely and stay vigilant to prevent choking. One participant with a 10-year-old child for whom overstuffing and choking have been consistent problems since toddlerhood described,

She has um, choked on stuff. So . . . we make sure everything’s smaller . . . we cut, even our ice cream. We make it into small like, cut it up into small pieces, or she’ll put the whole like, scoop in her mouth . . . I always make sure that it’s, you know, chewable, it’s not big. I’m always worried about that. (Participant 12)

See Figure 1, a photo submitted by Participant 12, for an example of the extra steps mothers took to prepare food for their children who had risks of choking. Figure 1 shows a portion of the lunch that Participant 12 packs for her 10-year-old child with DS to take to school, and includes bite-sized foods that are easy to chew and grapes that the participant cuts in half to prevent choking.

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Figure 1.

Photo Submitted by Participant 12: Part of the Lunch That This Participant Packs for Child With DS to Take to School; Includes Bite-Sized Foods That Are Easy to Chew and Grapes That the Participant Cuts in Half to Prevent Choking

Food Allergies or Intolerances

Nine participants’ children with DS had food allergies or intolerances, ranging from lactose intolerance to severe food allergies. Two children had been diagnosed with celiac disease, and two children had been diagnosed with Food Protein-Induced Enterocolitis Syndrome (FPIES). Traveling and eating outside of the home was challenging for these participants and their children with DS, particularly when children had celiac disease or FPIES. At times, participants were worried about allergen exposure and thus took careful steps to ensure that their children would not inadvertently eat foods with ingredients they were allergic to. One participant, whose 10-year-old son with DS has celiac disease, discussed the challenges of traveling, which the participant’s family does often to visit relatives:

Traveling with food issues is, is difficult because we are limited to what kinda fast food restaurants we can go. Chick-fil-A . . . that’s pretty much been like the only thing that he can, can really eat. Um, they do offer some grilled chicken nuggets that he loves. But other places, you know, like McDonald’s, every kid loves McDonald’s. He can’t eat at McDonalds, ’cause even the fries are fried in the grease that they fry donuts in, or chicken nuggets in that are coated, so, you have to really ask questions whenever you go to any kind of restaurant. . . . Um, it’s a, a big undertaking. (Participant 26)

Food Selectivity and Texture Sensitivity

Twenty-four participants reported that their child with DS had some degree of food selectivity, including sensitivity to different food textures. Some children’s selectivity was mild and required minimal extra foodwork on behalf of participants. For example, one participant described her 6-year-old child’s selectivity regarding vegetables, and strategies to manage it by offering vegetables in different forms: “He’s very picky. If he sees color, um, if he sees green or red or orange, he wants nothing to do with it. So we do . . . oven baked breaded green beans, or we do um, breaded cauliflower” (Participant 5). Another participant described her 4-year-old child’s selectivity related to food textures, stating that although her child does not like the texture of things that “crumble in his mouth” (Participant 4), like cookies or crackers, he still eats many other foods including fruits, vegetables, and meat.

More Pronounced Food Selectivity and Texture Sensitivity

Of the 24 participants whose children demonstrated food selectivity and texture sensitivity, 11 participants had children with more severe food selectivity and texture sensitivity, such that it was often challenging for children to eat enough food every day. Nine children required daily calorie supplements, and four children had feeding tubes. At the time of the interview, all 11 participants’ children with DS were enrolled in feeding therapy, although two participants were in the process of changing therapy providers. Most participants’ children with DS in this group were younger (seven children were 3–4 years old), but several children were older (four children were 5–8 years old).

The most common challenge that participants’ children in this group experienced was texture sensitivity with strong preferences for liquids or pureed foods. Several children accepted some solid foods intermittently, but most children refused any oral intake that was not pureed texture or liquid. One mother whose 3-year-old child with DS has a feeding tube described her daughter’s texture sensitivity and how her progression to eating solids, with hope for eventually weaning off the feeding tube, has been slow:

With any sort of textures, or anything that’s solid . . . as soon as it goes in her mouth she immediately will rip it out . . . it’s something that has been a big work in progress [with feeding therapy] for a very long time, that feels like you’re just kind of stuck in a rut and, and not going anywhere, because she just will not—she doesn’t like anything that’s solid, and the, the feel of that. (Participant 1)

Mothers made efforts to include their children with DS who had severe food selectivity and texture sensitivity in family mealtimes. Often this involved seating the child with DS with the family and administering tube feedings or providing pureed food along with routinely offering solid foods that the rest of the family was eating, even if the child typically refused these offerings. One mother, whose 4-year-old daughter with DS receives tube feedings, stated,

She gets 4 [tube] feeds a day, and, and I always offer her whatever food I give to [child’s sibling] . . . just to see if she’ll try it . . . So you know, I always try . . . You never know when she’ll do it [try solid foods]. You never know when she’ll just continue to throw it [solid food] off the tray. But whatever. I’d much rather pick it up off the floor . . . and take the chance that she will try it one time, than rather assume she won’t. (Participant 15)

See Figure 2 for a photograph submitted by Participant 15, which shows an example mealtime, during which a daughter with DS receives her tube feedings while sitting in her high chair.

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Figure 2.

Photo Submitted by Participant 15: An Example Mealtime for the With DS, Who Receives Tube Feedings While Sitting in Her High Chair and Is Included in Family Mealtime

Similar to participants whose children had severe food allergies, participants whose children had significant food selectivity, sensitivity, and limited intake reported that family travel and eating outside the home could be challenging. One participant whose 3-year-old son with DS had a feeding tube described,

We like to travel, and it’s something that our family loves to do together. So we have got the hang of it now. I, it took a little research, and I had to . . . look up, TSA rules . . . I always bring note from his doctor, so that I can bring the liquids on the plane . . . it’s honestly, it’s, we’re used to it. You know, we have to maybe sometimes pay for an extra suitcase to bring his formula or things like that. (Participant 24)

See Figure 3, a photograph submitted by Participant 24, for an example of the daily supplies needed for administering tube feedings to the child. Participants whose children with DS experienced significant food selectivity, sensitivity, and limited oral intake were often focused on making sure their child gained weight or maintained their current weight. Nine participants provided daily calorie supplements to their children with DS under the advice of health care providers. One participant with a 3-year-old with DS, described trying to get her child to eat and drink enough as: “Challenging and overwhelming and exhausting” (Participant 10). Another participant in this group with a 3-year-old child explained, “I am always aware of, like, you know, she’s a little on the thin side, and she needs to be bigger, or she needs to eat more like what, what’d she eat that day” (Participant 2).

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Figure 3.

Photo Submitted by Participant 24: Daily Supplies Needed for Administering Tube Feedings

Overeating

In contrast to participants whose children with DS had significant food selectivity and limited oral intake, there were nine participants who were concerned about their children with DS overeating. Six participants, whose children with DS ranged from 4 to 7 years old, described how their children would overeat preferred foods and not know when to stop eating these foods. Three participants, whose children with DS ranged from 7 to 10 years old, described how their children overate in general, including overeating preferred foods but also, for example, asking for more food after finishing a large meal. Two participants were concerned about significant weight gain their children with DS experienced in the past year before the interview. The remaining participants in this group were not explicitly concerned about their child gaining weight, and their priority in terms of preventing overeating was to promote their child’s health and healthy eating habits. Participants discussed strategies to prevent their children from overeating, such as monitoring portion size, distracting the child from eating more, and regularly discussing with the child how to recognize feeling hungry or full. One participant described how she tries to teach her 10-year-old daughter with DS, who often overeats, to recognize feeling full:

I’ll have her like, touch her tummy, like, “Is your tummy tight?” and she’ll [be] like, “Yeah.” I’m like, “Does your tummy hurt?,” she’s like, “Yeah.” I’m like, “Well, that means that you’re full. If your tummy feels like that, that means that you can’t eat anymore.” (Participant 28)

Participants Who Did All or Almost All Daily Foodwork

Thirteen participants did all or nearly all of the foodwork in their homes. Eleven participants in this group lived with a partner and two participants were the only adults in their household. Five of these participants worked full-time for pay, three worked part-time for pay, and five did not work for pay. One participant, who did not work for pay and whose partner did work for pay, described feeding her family of five children, including a 10-year-old with DS: “My husband occasionally will do some cooking, but that’s kind of um, sporadic. And when the inspiration hits. But. . . I’d say 98% of the time I’m the one that’s prepping the meals [including shopping] and doing the cooking” (Participant 26). Another participant who did not work for pay and whose partner did work for pay summarized her role in feeding her 3-year-old son with DS: “I mean, I control his nutrition” (Participant 13).

Participants Who Did Most of the Foodwork, With a Partner’s Help

Ten participants did the majority of foodwork, but their partners assisted them. Four of these participants worked full-time for pay, three worked part-time for pay, and three did not work for pay. Participants in this group commonly described their partners as “helping” or completing specific tasks related to feeding their child. One participant, who does not work for pay and whose partner does work for pay, described how her husband helps with foodwork for their six children, including a 6-year-old with DS: “So if I have forgotten maybe to take something out of the freezer whatnot, then my husband will take over, and he’ll usually make something simple. Um, quesadillas, or a frozen pizza” (Participant 19).

Participants Who Shared Foodwork With Partners

Four participants shared most foodwork with their partner equally. Two of these participants did not work for pay, and two worked for pay full-time. One participant provided several examples of how she and her partner share foodwork together, including working together to pack supplies when traveling with their 5-year-old child with DS, who mainly eats purees and requires daily calorie supplements:

We do it together . . . I’m kind of like a visual person, or my husband’s like a math person. So he’d be like, “Okay, we’re gone for 3 days. This is how much bottles [of calorie supplement] he needs” . . . And then I like, lay it out, um like, actually on the kitchen counter. And we kind of like, [say], “Do we have everything? Okay? Good.” So then we pack it. Um so it’s, it is a partnership in that way. (Participant 23)

The additional three participants who reported sharing foodwork with their partner also described daily tasks they shared with their partner, such as taking turns making family meals or shopping for food. One of these participants described how she did not want to be the sole caregiver responsible for feeding, thus she and her partner agreed to share foodwork. The two other participants described sharing foodwork but did not discuss detailed reasons why foodwork was shared. However, all three of these participants provided more examples of foodwork tasks that they completed themselves compared to their partners. For example, two participants described how they do most of the grocery shopping for their household. When participants described instances of doing more foodwork than their partner, rationale again was centered on logistic reasons such as having more flexible daily schedules than their partners. One participant, when probed about why she does the grocery shopping, stated, “Uh, my husband works full time, and I am a stay-at-home mom, so I just have the, the bandwidth for it” (Participant 4).

Participants Whose Partners Did More Foodwork

Two participants had partners who did more foodwork. One participant, who worked full-time for pay, previously did the foodwork for her family and it became too difficult to balance with other family caregiving responsibilities. This participant asked her partner, who also works full-time, to take over cooking and shopping while she did other caregiving tasks, and her husband agreed (Participant 29). The other participant, who did not work for pay, stated that she “can’t cook,” thus, her husband does the cooking in the household (Participant 18).

Sibling and Extended Family Influences on Foodwork

Twenty-four participants had more than one child, though all participants had only one child with DS. Many participants discussed how siblings of the child with DS and extended family members played important roles related to feeding. Participants generally described their other children as helpful with feeding the child with DS. The child with DS was the youngest in most families; however, a few children with DS had younger siblings. Participants discussed how older siblings would sometimes help prepare food or help feed their younger sibling with DS. Siblings also helped encourage the child with DS to try new foods. For some participants, their experiences raising their older children helped shape their perspective on feeding and raising their child with DS. One participant, who has two children older than her 5-year-old with DS, discussed her view on her son with DS’s food selectivity:

I don’t worry about that, because I had a picky eater, and he [sibling] eventually evolved . . . If [child with DS] was my first kid, or my second kid . . . I think I would really struggle with like, “he’s not eating this,” or “he’s not doing this,” and “his growth is really slow” . . . but I think having older kids and kind of [having] been down that road, it’s, I feel like parents worry about too much. (Participant 16)

Ten participants described interacting frequently with extended family members, most of whom lived close by. Participants described how these relatives were supportive and helpful in caring for and/or feeding their child with DS. This included family members helping with grocery shopping or cooking as well as providing hands-on child care to the child with DS. Eleven participants described living far away from most of their extended family and thus saw and interacted with relatives less frequently. Six participants did not think that relationships with extended family members significantly contributed to their experiences feeding their children with DS. Two participants described their extended family as not being very helpful or supportive, even if they lived close by.

Several participants described how interactions with extended family could be stressful at times, particularly when children with DS had more significant feeding challenges. For example, some extended family members offered food to a child with DS that the child was allergic to or was a choking hazard. Participants described the need to be extra vigilant about making sure their child could eat safely when around relatives. At times, extended family members offered unsolicited advice about feeding, especially when children with DS had limited oral intake due to food selectivity and sensitivity. Although participants acknowledged that their relatives were well-meaning, these interactions could be frustrating. One participant whose 8-year-old child with DS eats pureed foods and liquids by mouth and receives calorie supplements described,

When we eat meals with other people, particularly older people like our parents, um, who haven’t necessarily seen all of the appointments . . . they’re like . . . “Oh, have you tried this? Have you tried this?” And it’s like, “yeah, we tried that seven times 4 years ago,” you know.” (Participant 7)

Gendered Family Foodwork Traditions

When discussing daily foodwork routines, most participants cited logistic reasons, such as paid work schedules, as rationale for the current division of foodwork labor in their households. Few participants discussed how societal norms and expectations on women, or gender roles, impacted their experiences feeding their children. However, several participants described family traditions that aligned with typical gender roles. Participants acknowledged the traditions of women doing most of the foodwork in their families historically but emphasized logistic reasons or personal preference for why they currently do most of the foodwork. One participant, who works part-time for pay and whose husband works full-time for pay, discussed foodwork for her family of four children, including a 3-year-old with DS:

For me and [husband], we both grew up in I guess what you would call a traditional family, where mom was the one home with us the most, and made the meals and took care of the kids. Not that either of our dads weren’t around, they were, and they did help. But it was similar to what [husband] and I do now, where I’m just home more now, and . . . yeah, I, I actually enjoy taking care of the family like that and cooking much more than he does. (Participant 24)

Compromising on Family Traditions Rooted in Cultural and Ethnic Identity

Several participants discussed how family and cultural norms and traditions about foodwork and gender specific to their cultural, racial, and ethnic identities contributed to their experiences feeding their children. Often, participants tried to find compromises between cultural expectations and their own family priorities and demands of their daily lives. At times, participants actively resisted cultural traditions, including those that aligned with typical gender roles. Resisting gendered family caregiving traditions was mentioned particularly often by women who identified as Hispanic. Three participants who identified as Hispanic discussed their efforts to resist family traditions in which women do all the foodwork. One of these participants, whose 4-year-old child with DS has two older siblings and three older stepsiblings, stated: “Especially in our culture, they said. . . mothers are the one who cook. And that’s something that, I’m already working on it, and I’m like, ‘No. I can’t. I cannot, I can’t always cook’” (Participant 25). These participants do most of the foodwork in their households but have made concerted efforts to delegate tasks to their partners and talk with their partners about how they do not want to engage in daily foodwork alone.

Several participants described compromising on family traditions and expectations related to cultural and ethnic heritage that mothers should feed their children in a certain way. For example, one mother of two children including a 7-year-old child with DS, discussed how during her childhood, her parents prioritized healthy eating habits and talking about nutrition with their children. This participant identifies as white. Her husband, who identifies as Mexican, was raised with different expectations related to food. She explained,

He [husband] says that in a Mexican family, if your child is skinny, that is a bad reflection on the mother, the parents, because they haven’t fed their child well. But . . . if the child is fat, that’s a good thing, ’cause they’ve, the mother has fed him well, um. So . . . you know, two very, very different kind of backgrounds, trying to compromise in, in current life. (Participant 11)

Other participants who did not self-identify as Hispanic, including those who identified as either White, Black, Asian, another race, or more than one race, also discussed how their cultural and ethnic heritages contributed to their experiences feeding their children. However, these participants did not emphasize their cultural and ethnic heritage to the degree that participants who identified as Hispanic did. Although participants across all demographic categories discussed how societal ideologies regarding women and motherhood impacted their daily experiences, women who identified as Hispanic put more emphasis on how ideologies specific to the Hispanic heritage in their families contributed to daily experiences.

Countering Wider Societal Ideologies

Participants also described broad societal ideologies and social pressure on mothers to assume family feeding responsibilities and feed children healthy food, particularly organic or natural food. Participants prioritized feeding their children nutritious foods and encouraging healthy eating habits but needed to find ways to balance the social pressure to feed their families in a healthy way with the daily demands of their lives. At times, this social pressure was intertwined with expectations from participants’ family members. One participant, whose 3-year-old child with DS eats mainly pureed foods, explained,

Nowadays. . . it’s so much more like, “Oh, you have to feed your baby all organic and all you know, sugar-free, and all these things are bad for you” . . . even like you know, from my own family, like I’ve heard. . . “Oh, you should just puree . . . fruits and vegetables . . . yourself,” and, which is great, like, I would love to do that. But I’m going to admit that most of the time I don’t wanna like, sit there and be like, “Oh, make myself have more work to do” . . . sometimes I’m totally fine with just buying like the pre-made, pre-packaged, whatever. (Participant 2)

Other participants discussed balancing societal pressure to feed their children in a certain way with their desire to make sure mealtime was not stressful. A participant with two children, including a 4-year-old with DS who has sensitivity to some food textures, described,

I’ve gotten older and just realized, you know, some of the societal pressures . . . I really try not to let any of the weight of, you know, the stuff about like ‘all natural, and you know, can’t do that or can’t give your kids that.’ I just want them [participant’s children] to eat. I want them to be okay. I want them to be as healthy as possible, and I don’t want mealtimes to be a battle. So that I think that’s where my head is at these days, is just how can we enjoy our mealtime versus having it be a battle for the “absolute best.” (Participant 4)

Despite efforts to resist societal messaging, many participants still felt strong social pressure to feed their children in a certain way and to be the caregiver who is responsible for feeding in their family. One participant described how these social expectations contribute to her experiences feeding her 7-year-old child with DS:

I try not to like guilt myself in, in like ‘you’re not doing enough’ in terms of what she’s [child with DS] eating or how she’s eating. She’s not eating enough greens, and she’s not eating enough this and she’s not eating enough that. But definitely that feeling of . . . you have to provide, like it, it, her habits that she is going to have for the rest of her life are depending on you as a mom. Like, that’s it. Like Dad—no . . . it doesn’t matter what he eats or what he wants to eat or what like; it’s gonna be you [mom]. You’re the one who’s feeding your family. (Participant 9)