(HEA1d) Sociology of Medicine, Health, and Illness IV: Medical Sociology Early Career Symposium

This session focuses on the theoretical, methodological, and empirical issues pertaining to the sociology of health and health care. Papers explore health inequities, individuals’ experiences of illness and/or interactions with health care services, intersections between work and health, health care professions, and organization of the health care system. Tags: Equality and Inequality, Health and Care, Policy

Organizers: Elena Neiterman, University of Waterloo, Michael Halpin, Dalhousie University

Presentations

Garrett Parry, University of Calgary

Diabetes and Networks of Support

Diabetes is a chronic medical condition affecting approximately 8.8% of Canadians (LeBlanc, et al. 2019). Diabetes can be divided into several distinct types with Type 1 and Type 2 being the most common. While these types are separate, carrying their own stigmas and self-management requirements, there is also substantial overlap between them, especially in the public perception (Browne et al., 2014). Social support, or the “resources provided by other persons” (Cohen and Syme, 1985, p.4) can be important in improving health outcomes (Cobb, 1976; Berkman et al., 2000). For diabetes specifically, higher social support has been associated with improved self-management behaviours (Song et al., 2017; Tang et al., 2008). However, this support does not exist on its own. Rather it is embedded in our tangible social networks. Networks can be analyzed according to their structural (such as number of relations or density) and functional (such as support and other relational content) aspects (Thoits, 1995; House and Kahn, 1985). A majority of research has focused on how network structure and function impact health, but little attention has been paid to how these chronic conditions can themselves impact networks (House, Umberson, and Landis, 1988). Studies involving stroke victims found that post-stroke individuals had smaller networks and struggled to maintain their pre-stroke friends (Northcott et al., 2016). Similarly, Hass, Shaefer and Kornienko (2010) found that children with general poor health were less central in school networks and were more likely to be isolates than their peers. This study aims to expand that literature by exploring both the structural and functional dimensions of diabetics’ personal networks. To best assess the content flowing through these networks, I use a methodology rooted in network diagrams (Antonucci, 1986) that allows for an analysis of structure alongside a qualitative interview exploring the flow of support through that structure. Special attention is paid to the differences and similarities between Type 1 and Type 2 diabetics. The study first explores the diabetics’ close network by asking them to provide their most important relations. Follow-up questions then explore if and how these relations provide them with support for their diabetes management. Support is conceptualized along five dimensions: emotional, reassuring, guiding, integrational, and emergency support (Weiss, 1969; Weiss, 1974). This allows for a multiplex analysis and indeed multiplex relations feature heavily in these networks. Findings suggest that specific dyadic types such as parent-child relations can create barriers to support. Alternatively, these traditional role relationships are sometimes cleverly manipulated to provide support within a diabetic context, often aided by homophily or reciprocity. Furthermore, the relationship between subgroups and support functions yielded interesting insights. For instance, some subgroups specialize by providing only one type of support function that is not present in the rest of the network. Additionally, attitudes and perspectives on diabetes often coincide with subgroup boundaries, representing a potential source of stress for diabetes who have multiple subgroups within their personal network. This research aims to move away from the common approach of analyzing how networks impact illness and instead see how the opposite operates.

Mary Berger, Centre for Advancing Health Outcomes

Altruism and blood product donation: Problematizing altruism and voluntary donation

Blood product donation (BPD) is perceived to be a socially and morally valued act within society (Titmuss, 1971). In the Canadian context, BPD is always voluntary and people who donate never know who receives their donation except in extreme cases. Due to these factors and based on Titmuss’ work (1971), BPD has been dubbed the last purely altruistic act. However, viewing unpaid, voluntary BPD as a purely altruistic act has negative implications for those who experience marginalization in the blood donation space. The value placed on voluntary BPD gives those who face limited barriers a privileged status in the blood donation space. Therefore, privilege and status determine the ability to be altruistic. Conversely, the inability to perform altruistic acts, like BPD, prevents marginalized groups from engaging in socially desirable acts, which only reinforces their stigmatized identity. The inability to engage in blood donation demarcates those worthy of giving and those who are not. Historically, people who have been disproportionately banned or discouraged from donating have been BIPOC communities (Tran et al., 2013) and those belonging to the LGBTQ+ community, specifically gay men (Grace et al., 2021). The exclusion of these marginalized groups from BPD has long-lasting negative impacts on how they are perceived within the context of blood donation. Moreover, the emphasis on altruism as the ‘gold standard’ for donor motivations produces problematic taken-for-granted assumptions that those who can donate with few barriers are selfless heroes and those who cannot are potentially dangerous or high-risk donors (Valentine, 2005). The gatekeeping of who is a good donor or bad donor has wide-reaching implications for marginalized groups, and can threaten their right to citizenship. The assumptions of liberal policies and capitalist economic principles propose that rationality, autonomy, and productivity are necessary to be considered a full citizen (Carey, 2009; Erevelles, 2002). However, not everyone can fit these assumptions, which limits their rights and access to public services. In the context of BPD, limiting access to socially desirable behaviours restricts their rights and ability to be viewed as altruistic. We propose using Goffmans Presentation of Self Theory to understand the experiences of those othered in blood donation spaces. Altruism can be framed as a way for people to manage their impression as socially conscious citizens. Prioritizing altruism in BPD gatekeeps those who face structural and systemic barriers from giving, making it more challenging to present themselves as altruistic. While altruism bolsters some individuals moral standing, it can simultaneously highlight stigmatizing aspects of ones identity that exclude them from socially valued practices. Thus, the emphasis on altruism in BPD exacerbates the divide between privileged and marginalized groups. Marginalized groups must engage in impression management to mediate the impact of preclusion from donation on their identity, or risk further oppression.

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Non-presenting authors: Adam Easterbrook, Centre for Advancing Health Outcomes; Nick Bansback, Centre for Advancing Health Outcomes

Cesar Ramirez, University of Toronto

Disaggregating A "Model Minority": Assessing Distress Among Asian-Americans

Asian-Americans have been promoted as a “model minority” who have overcome the obstacles associated with being a racial minority group in the United States because they have achieved success in a variety of contexts, including attaining incomes and educational outcomes that are comparable to their White counterparts. However, the model minority myth homogenizes Asian-Americans and obscures important variation within the social category. In turn, although the mental health of Asian-Americans has become a popular research topic, Asian-Americans are nevertheless often homogenized in analyses. Moreover, research has tended to focus on diverse, but specific topics, including the adverse effects of race-related discrimination and migration. These research streams have provided mixed evidence, with some research suggesting better mental health outcomes for Asian-Americans and others stating that the “model minority” myth masks mental health issues. However, examinations of general distress among Asian-Americans have been less prevalent and less established. Moreover, research on Asian-American mental health has tended to be cross-sectional. This study seeks to build upon this research and further explore the relationship between the “model minority” myth and mental health by assessing how distress symptoms among a variety of Asian-American ethnic groups diverge from or converge with their White counterparts as well as with each other between adolescence and adulthood. This research utilizes the National Longitudinal Study of Adolescent to Adult Health (Add Health) to examine the trajectory of distress symptoms among White and Asian respondents through adolescence, young adulthood, and adulthood. Add Health is a nationally representative study that initially sampled adolescent respondents in grades 7-12 in 1994-1995 and has sustained data collection throughout adolescence, young adulthood, and adulthood. Self-reported psychological distress is measured through a constructed 10-item scale of mental health questions that are included in the Add Health in-home survey data. To assess the extent to which Asian respondents, both as a collective and disaggregated into their subregional and ethnic origin groups, adhere to the “model minority” myth and align with their White counterparts in terms of mental health outcomes, three regression models were constructed. Each model uses the data’s White respondents as its reference category. The first model broadly compares the difference in predicted distress scores between White and Asian respondents. The second model distinguishes Asian respondents by subregion (i.e., East Asian and Southeast Asian). The third and final model, meanwhile separates all Asian respondents by the ethnicity with which they self-identify (i.e., Chinese; Filipino; Japanese; Korean; Vietnamese). Growth curve models conditioned on income and education will be utilized to explore variation in the trajectories of distress symptoms at the aggregate, regional, and country levels of Asian respondents. This variation will also be compared to the trajectories of distress symptoms of White respondents over the three survey waves. Initial regression analyses suggest that Asian-Americans report distinct levels of distress symptoms from their White counterparts and that these differences vary amongst the different ethnic groups that comprise the Asian-American category. Statistically significant differences exist at each of the selected survey waves. Further, these relationships do not appear to be static. Convergence does occur over time and the predicted mean distress scores for the different ethno-racial groups tend to follow the same pattern of peaking during adolescence (Wave 1), declining in early adulthood (Wave 3), and then rising slightly during adulthood (Wave 4). However, statistically significant differences between White and Asian respondents exist at each wave of the survey. My regression models disaggregating the Asian-American category by subregion and ethnic group demonstrate variation in how different subregional and ethnic origin groups diverge from or converge with the predicted distress scores of White respondents. This subsequently suggests that, over the life course, levels of distress vary in important ways both between White and Asian respondents and amongst the Asian respondents. Existing research on the mental health of Asian Americans has demonstrated mixed results, but these initial findings suggest that Asian-Americans report distinct levels of distress symptoms from their White counterparts and that important variation exists within this social group. Forthcoming analyses will illuminate more clearly the exact nature of these differences. Nevertheless, initial findings lean towards previous research that indicates that mental health issues among Asian-Americans may be overlooked due to assumptions associated with the “model minority myth”.

Elizabeth Cameron, Queen's University

Suspected endometriosis: A scoping critical intersectional review of medical literature

Endometriosis is a chronic disease that affects up to 15 percent of women and unknown numbers of gender-diverse people globally (CMAJ 2023). The condition causes pain and symptoms that disrupt important bodily functions including enjoying sexual pleasure, movement during normal daily activities, menstruation, and pregnancy. Common comorbidities include anxiety, depression, fatigue, and gastrointestinal conditions, along with high rates of infertility (CMAJ 2023). Endometriosis’ status as a feminized, gendered disability (Jones 2021) has obscured the disease from medical and social scopes of concern, resulting in a prolonged lack of funding being directed towards understanding the condition or improving treatment for those affected (Ellis et al. 2022). Presently, those with endometriosis symptoms wait an average of 4-12 years to receive a definitive diagnosis, as this can only be confirmed through surgical intervention which allows the disease’s presence to be visually observed (Agarwal et al. 2019). In Canada, the average delay between symptom onset and a confirmed endometriosis diagnosis is 5.4 years (Singh et al. 2020). During this period, people with endometriosis continue to experience painful, uncomfortable symptoms without sufficient explanation or relief. Clinical diagnosis of endometriosis – when a physician suspects someone has the disease based on non-surgical evaluations and symptom history – is increasingly encouraged in Canada and the U.S. in order to reduce the diagnostic delay, and circumvent problems arising from the reliance on a surgical diagnostic method, which is invasive and can be sterilizing (Agarwal et al. 2019; CMAJ 2023). However, people with suspected endometriosis – those who have not had the diagnosis confirmed through surgery – are yet to be considered as a population with unique care needs, experiences, or desires. This paper draws from my SSHRC CGS-M supported master’s thesis research, which is the first academic contribution in the social sciences to consider suspected endometriosis in particular. First, a scoping review of suspected endometriosis’ construction as a diagnostic category in medical literature is described. I then reframe this medical literature through a critical intersectional health studies perspective, finding that a lack of medical knowledge and care concerning those with suspected endometriosis produces racialized, gendered diagnostic outcomes which serve in colonial, patriarchal projects of ableism and cis-heteronormativity. People with suspected endometriosis are conceptualized as a heterogeneous epistemological community (Whelan 2007) which experiences systemic inequities due to the intersecting oppressions which underpin endometriosis care. Finally, the emergent implications for improving care for people with suspected endometriosis are considered. This project responds to intensifying calls for research which places a long-overdue emphasis on feminized experiences of illness, and in particular, those with endometriosis (Ellis et al. 2022; Agarwal et al. 2019; Jones 2016). Critical, intersectional, qualitative research is urgently needed in order to develop more relevant, accessible, and effective care systems for those affected by this devastating chronic illness (Wahl et al. 2021). In 2023, Health Canada announced over $1.6 million in funding to improve sexual and reproductive services for people living with endometriosis, further highlighting the crucial need to expand care for those with this condition. Thus, this research contributes intersectional knowledge to be used as evidence by community advocates and Canadian health policy makers to work towards improving care for people with suspected endometriosis.

Anna Kuznetsov, University of Toronto

Navigating Breastfeeding Challenges Online

Breastfeeding experiences have predominantly been studied using surveys and interviews. North American studies reveal that mothers most often struggle with breastfeeding due to low milk supply and difficulty with technique (Odom et al. 2013; Public Health Agency of Canada 2022). Many scholars have found that mothers equate successful breastfeeding with good mothering (in line with the intensive mothering model), such that an inability to breastfeed is experienced as a personal failure (Knaak 2010; Lee 2007; Thomson, Ebisch-Burton, and Flacking 2015). In addition, early negative breastfeeding experiences may be a risk factor for postpartum depression (Watkins et al. 2011). However, there is an impetus to understand not only “the normative and ideological imperatives of breastfeeding and how women manage them but to explore these in the context of women’s changing lives, the multiple and diverse conceptions of ‘good mothering’ and the values attached to different feeding practices” (Marshall, Godfrey, and Renfrew 2007:2158). Responding to this call, I investigate how parents navigate their breastfeeding challenges on a popular parenting website’s breastfeeding forum, a method which to my knowledge has not been previously undertaken by social scientists. I analyze forum discussions to uncover: 1) What breastfeeding challenges are discussed and what are their impacts on well-being, as perceived by posters? 2) What are the dominant cultural tropes or discourses around breastfeeding and motherhood? 3) What is the role of the forum in responding to breastfeeding challenges? Findings indicate that parents experience a myriad of breastfeeding challenges, from those which are more medical or individual in nature (e.g., low milk supply, difficulty with breastfeeding technique) to those which are more social in nature (e.g., unsupportive partner, barriers to pumping breastmilk at work). However, underlying all issues is a social element, meaning that greater social investments—such as accessible, responsive, and tailored hands-on support, comprehensive, accurate, and timely information, and broader cultural education and support for breastfeeding—could prevent many breastfeeding challenges. This is a crucial objective as forum participants describe feeling like a failure, discouraged, confused, lost, emotional, desperate, exhausted, disheartened, tired, drained, isolated, at a loss, frustrated, heartbroken, stressed, and upset in response to their breastfeeding challenges. The discourse on the forum tends toward the ideal of “good mothering through breastfeeding,” which undoubtedly contributes to adverse mental health in the case of breastfeeding challenges, yet other meanings are attributed to breastfeeding as well. In addition to (1) “good mothering through breastfeeding,” I identify (2) “good mothering through being present,” and (3) “mother comes first” as salient discourses on the forum. The second discourse champions breastfeeding, as long as the mother-baby bond is not harmed. Thus, if a mother has trouble breastfeeding, and this impacts her mental health or ability to be present with her child, then formula-feeding is preferred (“fed is best”). The final discourse “mother comes first,” prioritizes mothers’ well-being, as feeding method is considered inconsequential in the long run. These diverse interpretations of breastfeeding agree with findings by Marshall et al. (2007), which suggest that mothers are swayed by a variety of considerations in relation to breastfeeding, and that the identity of “mother” is negotiated with pre-existing identities such as woman, partner, and worker. The forum is thus a place where different views and orientations can be shared and explored. It is also a space where parents share experiential and embodied knowledge, which serves to reclaim authority and expertise from the medical establishment. While some may consider the forum community as an effective response to inadequate institutional supports, the findings here underscore the need for a public health approach that balances babies’ and parents’ well-being, as the physical and mental health burdens associated with breastfeeding challenges can be quite significant for parents.