Emma Marston, RN, BSN, CLC
In this post, I discuss my rationale for combining two theoretical frameworks – feminist theory and an ecological model – to study maternal experiences related to food and feeding children with Down syndrome. First, I acknowledge my positionality: I am a PhD candidate in nursing and a white, married, heterosexual woman without a disability. I am a mother of two typically developing children. I do not know what it is like to be the mother of a child with Down syndrome. My program of research is focused on health promotion for children with disabilities and their families, with an emphasis on feeding, physical activity, and maternal caregiving. Acknowledging my social location as a nurse scientist working in this topic area is important because it allows for a recognition of the limitations in my analyses. It thus also welcomes the perspectives and insights of other nurse scientists who can help enhance our understanding of the unique needs of children with disabilities and their families so that we can better support families and improve health outcomes.
Down syndrome is a developmental disability caused by abnormalities with chromosome 21. In the United States, Down syndrome occurs in about 1 in 772 live births, meaning about 5,100 babies with Down syndrome are born each year. Children with Down syndrome typically have low muscle tone, intellectual disability, and higher risks for conditions such as congenital heart defects. Children with Down syndrome also have high risks of feeding challenges, including food selectivity, trouble chewing, and trouble swallowing (Jackson et al., 2016; Osaili et al., 2019). Still, people with Down syndrome can live long, productive lives, so health care providers should focus on promoting health and preventing chronic disease in addition to managing underlying health conditions. Individuals with Down syndrome have higher risks for overweight and obesity (Ptomey et al., 2020), so health promotion should include weight management. Research on health promotion and weight management for children with disabilities including Down syndrome is limited (Must et al., 2014; Ptomey et al., 2020). There is especially limited research within the discipline of nursing related to feeding and dietary intake among children with Down syndrome.
Feeding children is a health-related experience within the family context that can impact children’s nutrition, growth, development, and weight, as well as social and emotional connections among family members (DeVault, 1991; Goday et al., 2019). Feeding is family caregiving work. Caregiving is most often done by women and is under-recognized and undervalued in society (Brenton, 2017; DeVault, 1991). Gender inequity in caregiving has worsened in the last several years due to COVID-19, especially for mothers of young children. As feminist sociologist DeVault described in 1991, feeding work is complex and involves shopping for food within a family’s budget, planning meals, and meeting family members’ dietary needs and preferences. This complexity is still present in feeding work today and may be even more complex if the child has feeding challenges (Brenton, 2017; Estrem et al., 2018).
Scholars have recommended using ecological/socio-ecological frameworks to guide studies about overweight and obesity in children with disabilities (Must et al., 2014; Walker et al., 2019). There are different versions of ecological frameworks, but the main focus of these frameworks is on levels of individual-environment interaction. The levels of interaction described by Bronfenbrenner in 1977 (the microsystem, mesosystem, exosystem, and macrosystem) are commonly used terms. Bronfenbrenner’s (1977) ecological model is the main inspiration for my application of an ecological framework.
Ecological frameworks offer insight into factors that may be related to how parents feed their children. Using ecological frameworks can help scholars identify areas for potential nursing interventions by locating each factor related to feeding within an environmental system level. Examples of factors related to child feeding that researchers have identified within ecological frameworks are the child’s health condition (microsystem), interactions with health care providers (mesosystem), school lunch policies (exosystem), and sociocultural norms about weight (macrosystem; Must et al., 2014; Walker et al., 2019).
There is a gap in the literature about feeding children with Down syndrome that may be hard to address with continued use of ecological theories alone. Although most participants in existing studies about feeding children with disabilities such as Down syndrome have been mothers, few authors have discussed the gendered nature of feeding work and how this may contribute to maternal feeding experiences. Applying a feminist perspective may help address this literature gap relating to how gender may contribute to mothers’ experiences feeding their children with Down syndrome. The feminist perspective I apply to this topic is mainly based on the scholarship of sociologist DeVault (1990, 1991, 2014) and also informed by feminist scholars in nursing (Hall & Stevens, 1991; Im, 2010, 2013; Mkandawire-Valhmu et al., 2009; Ruiz et al., 2021). I also draw inspiration from tenets of feminist disability studies and intersectionality (Hirschman, 2012; Ruiz et al., 2021; Saxe, 2017).
Applying a feminist perspective to this topic encourages scholars to explore mothers’ experiences within current and historical contexts, while recognizing how power dynamics related to dominant ideologies such as patriarchal beliefs, societal expectations on mothers, and stigma against disability may contribute to maternal feeding experiences (DeVault, 1991, 2014; Hall & Stevens, 1991; Im, 2013). Applying a feminist lens urges scholars to consider how various systems of oppression such as ableism, racism, sexism, and classism exist and may intersect to impact mothers’ feeding experiences (Brenton, 2017; DeVault, 1991; Hirschmann, 2012; Ruiz et al., 2021). Engaging in reflexivity as a feminist nursologist drives scholars to acknowledge the social location of mothers and of themselves as nurses operating within the medical model of disability that dominates our health care system (DeVault, 2014; Hirschmann, 2012).
A combination of ecological and feminist frameworks offers nursologists a valuable and more holistic scholarly insight into the experiences of mothers feeding their children with Down syndrome. Combining feminist theory and an ecological model to the study of mothers’ experiences feeding their children with Down syndrome is innovative. Although variations of feminism and ecological frameworks have been combined to study health-related behaviors (e.g., Opara, 2018), to my knowledge the use of these two perspectives together has not been applied to the study of maternal experiences feeding children with Down syndrome. Keeping an ecological model as part of the framework will make it simpler to compare findings and implications for nursing practice with findings from existing literature. Applying a feminist approach brings dominant ideologies specific to women into focus. This allows nurse scientists to expose the complex, undervalued caregiving work related to feeding that, to my knowledge, is currently not detailed in the literature specific to mothers of young children with Down syndrome. The two frameworks work well together, as concepts important to feminist theory combine well with ecological frameworks (e.g., dominant ideologies about gender fit into the macrosystem level).
This topic and these frameworks are significant to nursing. However, the primary theorists I cite (Bronfenbrenner, 1977; DeVault, 1990, 1991, 2014) were not nursologists. To demonstrate how studying mothers’ experiences feeding their children with Down syndrome from an ecological and feminist perspective is relevant to nursing, I refer to a blog post by Dr. Peggy Chinn: “What makes a theory or model “nursing”?” Dr. Chinn (2019) explains that a theoretical perspective can be considered a nursing perspective if it leads nursologists to focus on the defining values of our discipline, including two essential constructs: “knowledge of the human health experience, and knowledge of nursing actions leading to health and well-becoming”. Investigating mothers’ experiences feeding children with Down syndrome from a nursing perspective using a combined ecological and feminist framework will result in knowledge of the human health experience of caregiving for children with disabilities. This knowledge will be uniquely nursing knowledge because of the significance of this research topic to nursing. The concepts of health, human wholeness, the human-health-environment relationship, and caring are key concepts within the nursing discipline (Smith, 2019) and are each reflected within the study of maternal experiences feeding children with Down syndrome. T
he phenomenon of feeding children is related to health and human wholeness, as feeding is related to not only children’s physical health, but also to social and emotional health among family members (DeVault, 1991; Goday et al., 2019). Considering maternal experiences feeding children with Down syndrome within a feminist and ecological perspective brings the human-health-environment interactions related to feeding into focus. This knowledge will have implications for caring, or nursing actions to promote health and well-being of children with Down syndrome and their families. For example, if primary care nurses have more knowledge about the unique needs of children with Down syndrome and their mothers related to feeding, these nurses can make more tailored recommendations to mothers when providing anticipatory guidance related to feeding and health promotion for children with Down syndrome. Knowledge generated from the study of maternal experiences feeding children with Down syndrome will also have implications for further nursing research.
Readers, have you ever combined two theoretical frameworks to guide research?
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About Emma Marston
Emma Marston, RN, BSN, CLC, is a PhD candidate in Nursing at the University of Wisconsin – Milwaukee. Her research interests are centered on health promotion for children with disabilities and their families. Emma is a graduate of the Wisconsin Leadership Education in Neurodevelopmental and Related Disabilities (WI – LEND), a federally funded training program focused on interdisciplinary systems of care for individuals with disabilities. Emma’s clinical practice and research experience in nursing has primarily been in pediatric settings.