Socioeconomic Status and the Domestic Allocation of Type 1 Diabetes Care

Socioeconomic Status and the Domestic Allocation of Type 1 Diabetes Care

  • Ashby F. Walker, PhD - University of Florida,
  • Desmond A. Schatz, MD - University of Florida,
  • Cathryn Johnson, PhD - Emory University,
  • Henry J. Rohrs, MD - University of Florida,
  • Kelsey R. Salazar, MPH - University of Florida

Abstract

Objective:
Few studies explore how socioeconomic status (SES) influences the allocation of type 1 diabetes (T1D) care within households. This study used survey research to better understand the perspectives and experiences of maternal caregivers who have adolescents with T1D.

Research Design and Methods:
Survey research with open-ended sections was conducted with women who lived with another adult partner and had full custody of an adolescent 12-19 with T1D. Demographic information included age, gender, race/ethnicity, marital status, education level, occupation, and household income. Disease duration and youth HbA1c levels were also captured.

Results:
Forty-six caregivers completed surveys. Care allocation, diabetes strain, and parenting strategies were compared by income categories and exhibited variation accordingly. Women from households with income <$40,000, classified as low socio-economic status or less affluent, tended to report sharing diabetes-related responsibilities equally with partners; tended to hold full-time, low-wage positions; and noted stress associated with inflexible jobs and financial concerns. Women from households with incomes $80,000 or higher, classified as high socioeconomic status or more affluent, more commonly described primary caregiving, professional status changes, and difficulty transferring control to their teens.

Conclusion:
These findings indicate significant, yet varying, strain for women from different SES thresholds that deserves further attention. For female caregivers of adolescents with T1D, the unequal distribution of labor associated with care-related demands may contribute to outcomes like depression, anxiety, and familial conflict. Providers should be acutely aware of the toll that care-related demands may take on women and have information readily available on support groups and mental health services.

Introduction

The demands of caring for a child with type 1 diabetes (T1D) are challenging, involving continually rigorous supervision related to insulin management, food intake, and blood glucose monitoring. These efforts are key in helping achieve optimal levels of glycemic control and health vitality in T1D [1]. Parental involvement is crucial for meeting such targets [2-4]. Orchestrating the multifaceted components of care coordination in diabetes happens within the domestic sphere of family life and, subsequently, takes a toll therein. Parents of children and adolescents with T1D experience heightened levels of anxiety, stress, and depression, and lower levels of family cohesion [5-8]. Parental burnout, which presents serious health risk, is associated with the degree to which everyday life is affected by T1D [9]. There are a number of intersecting socio-contextual factors, such as sexuality, gender identity, racial and ethnic status, and socioeconomic status that may shape experiences of caregiving, but studies documenting parental strain in T1D care direct most attention at women, namely mothers. Diabetes care given by mothers influences a myriad of outcome variables like depression [10], sleep patterns [11], and anxiety [8, 12]. In a similar vein, many studies examine the impact of outcomes like maternal depression on glycemic control for their children [13, 14].

The focus on female caregivers in diabetes is understandable given persisting trends in household labor and illness care: in what sociologists have termed a “stalled revolution,” women’s participation in the labor force has risen dramatically but has not been offset by an equal rise in men taking up domestic responsibilities [15]. Even when women work full-time in the labor force, they continue to shoulder the vast majority of domestic work when compared to men, with 50% of women engaging in housework on an average day compared to only 22% of men [16]. Even without chronic illness in the home, mothers are more likely to take primary responsibility for “night shift” caregiving than fathers, even when both partners are employed full-time [17]. Mothers are ten times more likely to miss work taking a child to medical appointments and are much more likely to assume primary responsibility for routine medical care than fathers [18]. Among parents of children with T1D, mothers report significantly greater burden related to medical treatment and greater emotional distress than fathers [19].

Yet, when considering the impact of maternal care-related demands in T1D, studies rarely explicate how these processes may vary by intersectional identities and by demographic characteristics. One particular factor is socio-economic status: low-income women who have children with T1D undoubtedly face many concurrent hardships that exacerbate the complications of living with a chronic disease. Service sector jobs that are commonplace for the working poor rarely allow for paid leave time to accommodate medical visits and render very low wages overall [20, 21]. Given tremendous disparities in health outcomes in T1D associated with SES [22-26], it is crucial to examine how features of social context may impact decision-making related to diabetes care, and to identify challenges that may be unique to economically vulnerable families so interventions can be tailored accordingly.

This study used survey research to better understand the perspectives and experiences of maternal caregivers who have adolescents with T1D. Navigating the challenges of T1D can be particularly pronounced during this time of rapid developmental changes for teens [27]. Although many studies focus on parental involvement in T1D, they tend to overlook basic issues related to the allocation of diabetes care responsibilities among partners, and make a priori assumptions that women are the primary caretakers as a product of caregiving’s traditional association with the domestic sphere and gendered responsibilities. It is important to consider as a topic of inquiry the allocation of diabetes care work itself. Furthermore, this study focuses on how the distribution of diabetes care-related work and perceptions about its challenges may differ by SES.

Research Design and Methods

Survey research was conducted with maternal caregivers of teens with T1D under a protocol approved by the IRB at the institution where the research took place. Inclusion criteria included women who: 1) had full custody of an adolescent between the ages of 12-19 with T1D two or more years post-disease onset and 2) lived in a household with another adult partner. Recruitment took place during routine endocrinology visits or at diabetes camps. Diabetes camps are structured programs for youth with diabetes to socialize and participate in activities akin to those of traditional summer camps.

The survey contained questions about basic household demographics including age, gender, and role relationships to youth with T1D for all household members. Demographic information collected specifically about maternal caregivers included race/ethnicity, marital status, education level, occupation, and total household income. Health information collected from medical charts about teens included T1D disease duration (age of onset for teen) and HbA1c as a measure of glycemic control. These characteristics were used to group participants into categories, such as socioeconomic status brackets, for qualitative cross-case comparative analysis. Closed-ended Likert scale questions ranging from “strongly agree” to “strongly disagree” were adapted from the General Social Survey [28] to ask about the allocation of household labor, especially as it related to diabetes care. Open-ended questions allowed maternal caregivers to elaborate on the closed-ended responses, and to discuss care-related demands in narrative form, such as “Please describe the work that goes into caring for a loved one with diabetes on a regular basis,” and “What are the biggest challenges you and your family face in regards to diabetes?”.

NVivo (v.11) was used for analysis of open-ended responses involving two coders. Qualitative analysis of open-ended responses used an inductive approach to develop questions of interest regarding diabetes caregiving in relation to family socioeconomic status and domestic allocation of labor. Using a method of constant comparison [29], the researchers used open coding to identify and categorize core themes and dimensions related to these central concepts. Researchers created a within-case analytic memo for each caregiver by writing separate analytic narratives tailored to each participant that elucidated individual attitudes and experiences towards diabetes care in the context of family SES and domestic allocation. Researchers then developed analytic memos of central codes by grouping cases based on characteristics such as SES or professional status provided in the demographic portion of the survey, and deconstructing how participants in these classifications discussed diabetes care compared to other groups. In all, three major thematic areas of differences according to SES emerged including the domestic allocation of labor, diabetes-related strain, and parenting strategies for diabetes care.

Results

Table 1 provides overall demographic characteristics of the sample. Forty-six women completed surveys including 43 mothers and 3 grandmothers with an average (mean) age of 46 years old for mothers and 61 years for grandmothers. On average, teens were 15 years old and the average disease duration was 6.5 years. Thirty-six of the women described their relationship status as “married,” nine as “divorced and re-partnered,” and one as “partnered, never married.” All women were partnered with men. Maternal caregivers came from a range of SES thresholds: twelve had total household yearly incomes of less than $40,000, 12 were from households between $40,000-$80,000, and 20 were from households greater than $80,000. For employment status, 27 women indicated that they worked full-time, 15 women listed “homemaker,” two worked part-time, and two (both grandmothers) were retired. Those who listed homemaker for employment status were all from households with >$40,000 total income. Of those who listed that they were homemakers, six described a career shift related to their child’s diagnosis of T1D (e.g. quitting their jobs or decreasing to part-time work).

Differences in Domestic Allocation of Diabetes-Related Labor

Analyses within every income bracket showed varying structures of domestic allocation, but distinctive trends emerged when examining answers across levels of SES. Figure 1 provides supporting evidence regarding perceptions of shared labor in diabetes care. When answering the closed-ended question, “the work of caring for my child with diabetes is shared equally with my spouse/partner,” the majority (75%) of women in households with <$40,000 total annual income agreed or strongly agreed with that statement, whereas only 32% of women in households with >$80,000 agreed or strongly agreed. Table 2 provides examples of how open-ended narratives about “sharing” diabetes responsibilities varied by SES using $80,000 as the threshold for dichotomous comparison. In instances where women elaborated about “sharing” diabetes care with partners (Table 2), women in the <$80,000 group referenced the necessity of shared allocation more often than women in the >$80,000 group. Also, the total number of words provided in open-ended spaces depended on SES: more affluent women (>$80,000) used a mean of 124 words to describe the work that goes into diabetes care and less affluent women (<$80,000) used a mean of 59 words.

Among caregivers who did discuss domestic allocation, very few depicted truly shared labor between both partners, and of those, all but one came from less affluent families. Women from households with incomes >$80,000 far more commonly described an inequitable allocation of diabetes-related labor in their homes. Caregivers who described inequitable allocation fell into two general categories: those who were de facto caregivers and considered inequitable allocation a non-issue or a satisfactory situation, and those who felt excessively burdened or lacking in support. The handful of women who had experienced a decreasing professional status change upon diagnosis of their child, such as dropping to part-time work or stay-at-home motherhood, also fell exclusively into the highest level income bracket of >$80,000. These professional status changes were sometimes described as natural, expected, and an innate product of motherhood. One mother said, “[child’s name] is more comfortable with me being her primary diabetes care giver because I am better at it than my husband,” and another said, “It’s fully understood – this is my job!” However, one mid-level professional who experienced a status change from full to part time upon diagnosis disagreed that the work of care was shared equally and said, “It’s ME MYSELF and I with [daughter’s name]! I’m on my own.”

Only one caregiver discussed increasing her professional status upon diagnosis. In discussing allocation, she said, “I have been the one to care for the children because I used to work part-time and was more available than my husband. Now I work full-time it has become more difficult to keep up.” Unlike mothers from houses with a total household income >$80,000 who experienced a decreasing professional status change, she fell into the <$80,000 income bracket and indicated that financial costs of diabetes care played a role in her moving from a part-time data entry position to a full-time position, saying “Financially, even with insurance, it can be a burden. Taking time off work to attend Drs appointments, lab work etc.” This particular mother emphasized that the domestic allocation of diabetes care initially fell on her because she worked part-time; however, moving to full-time status at work was not accompanied by less responsibility related to diabetes care.

Similarities in Narratives Regarding Diabetes-Related Strain

Caregivers from all income groups shared several broad similarities in discussing their approaches and experiences with diabetes caregiving. The most striking and pervasive similarity across income levels was a deep-seated and ever present fear of serious health consequences to their child. Mothers recounted living with worry and anxiety on a daily basis, and described in detail various hypothetical situations and contingencies that they imagined leading to serious negative health outcomes. When less affluent mothers were asked about challenges related to diabetes care, one mother described “constant worrying over him, pulling for him – that’s the hardest thing.” Another mentioned that “the ‘what if’ we can’t get her insulin for whatever reason horrified me…fear, worry…and not showing her too much that I am feeling those things.” One other parent said a challenge was “overcoming the shock…he was literally under 100 pounds when he got diagnosed. They said he was two days away from dying.” Mothers from more affluent families volunteered similar reactions, saying that some of their worst fears were “Living with the fear that you, your husband, or [child’s name] would screw up so bad with one mistake that could cost him his life!” or “I get up 2x a night to check her BS [blood sugar], since that is my worst fear – to have her drop too low for too long and pass away during the night.” These narratives were frequently interspersed with language traditionally associated with performative gender identity. Motherhood, specifically, was equated with an intense, ceaseless focus on a child’s well-being outstripping that of any other type of caregiver, and was acknowledged as being perceived as excessive to others. One caregiver noted her “constant hounding” and said, “so sorry if it embarrasses you, my son!” One described the work that goes into diabetes care as “mostly nagging and worrying – ‘have you checked’…say it all the time.” Another said, “I still worry about his diabetes and I am sure as a mother I always will.”

Differences in Narratives about Diabetes-Related Strain

Planning for diabetes care was one of the most commonly discussed themes across income brackets, but was more frequently discussed in greater depth by women with total household incomes of >$80,000. Even the simplest descriptions of planning for care among women in this income threshold were accompanied with more specific details and emotional framing than those provided by less affluent women. One mother, a mid-level professional, said, “The care for our daughter is an all-day event and very emotional. It involves constantly monitoring her blood sugar, counting carbs, giving/checking dosage amounts and some nagging to make sure she is doing everything she should.” Another mid-level professional noted “Diabetes care is thought about 24/7. You are always thinking, when did he check his sugar last? What was his last number?...” and went on to list eleven additional questions and contingencies. Emblematic of this theme toward lengthy descriptions, a mother from the >$80,000 income threshold who provided a laborious account of the care associated with diabetes, said “I could go on and on about this!!”

Although the vast majority of less affluent women also included descriptions of planning for care, they were much less involved, utilitarian, and less frequently included such emotionally-laden sentiments. One mother with a household income level between $40,000 and $60,000 succinctly noted that planning for care simply involved “selection of food, reminders to check, watch activity level.” Another mother who worked in the service sector said, “I follow up and remind him sometimes about checking his blood sugar. I check to see which medication he needs on a weekly basis.” One grandmother from a <$40,000 household said “He [child with diabetes] just takes care of it. It’s life as normal.” A mother with a total household income of <$20,000 answered the question about work associated with diabetes care as follows: “No extra work at all. A few changes in the meal planning, healthy menu, shopping for certain items that are sugar free, lower carbs. Just to remind him if he has tested.”

Also, women from households with <$80,000 more commonly noted financial strain. A mother who listed “cafeteria worker” for her occupation with a household income of $20,000-$40,000 said “the biggest challenge we have is paying for his medication every month. That’s a big challenge for us.” Another mother with a household income of $20,000 who worked full-time at a fast food restaurant said the biggest challenge of diabetes was “the cost and time off needed from work.” A mother who worked as a Certified Nursing Assistant with a household income of $20,000-$40,000 even noted worry about her son’s ability to pay for his own care as an adult and about the best career trajectory for him saying “I mostly worry about … how he will be able to afford all his care as an adult. What will be the best career for him as a diabetic?” Although there were instances where women from the >$80,000 threshold referenced the financial costs associated with diabetes care, they were far less frequent and never included references to missing work as a specific challenge related to economic loss.

Differences in Parenting Approaches for Diabetes Care

Several distinguishable tendencies regarding parenting strategies and income level emerged. Accounts of emotional struggles surrounding “letting go” of control as children grew into adolescents were much more commonly provided by affluent mothers. One mother from a household of >$80,000 described the struggle related to giving her daughter autonomy in her care as she got older: “Now it’s a lot of emotional ‘letting go’ – supporting her from a distance.” One affluent mother described the biggest challenge related to diabetes as follows: “Allowing her the freedom and independence that she craves and needs. Not hanging over her shoulder every day.” Thus, more affluent mothers commonly described an internal tug-of-war surrounding allowing their teens to function with greater independence in managing diabetes.

Regarding the transfer of control to child self-management, less affluent mothers tended to show approval for their child’s self-management and faith in their abilities, in contrast to many more affluent mothers. Mothers in households under <$80,000 described their children with diabetes as capable and independent. One mother noted her child was “very responsible about checking his blood sugar and giving himself insulin” and another said, “I have been very blessed that my son is very responsible at taking care of his health.” Another mother noted, “He [child with diabetes]is a strong individual and manages his care very well.” Although some mothers in households >$80,000 did also note their child taking on greater responsibility, this transference of care agency seemed to present an accompanying emotional battle for control that less affluent mothers were much less likely to discuss experiencing.

Concern and anxiety surrounding children’s abilities to self-manage their care was shared among caregivers of children of different genders, as was confidence in self-management of care. One unique difference was that caregivers described collaborative management between the caregiver and the child only in cases where the child was a girl. One caregiver of a girl with diabetes noted being “more subtle in my support…we have more ‘discussion.’” Another related that “I firmly encouraged her to ‘know’ and ‘manage’ and ‘count’ and ‘do the math’ etc. herself. Even while I was doing it too. But it was ‘good’ because we caught each other’s mistakes too.” However, the most frequently discussed characteristic regarding self-management behaviors was age. Caregivers frequently discussed how care was “easier now that she [the child] is older” and how “It’s harder and it’s easier to help my kids with their diabetes as they get older. They take on more responsibility with it now, which means less control for me.” Caregivers also expressed challenges when they did not feel the child was appropriately transitioning to self-management, one listing a point of contention as “frustration when [child’s name] doesn’t take enough age-appropriate responsibility.”

In addition, references to diabetes camps, advocacy, and education were exclusively limited to women in more affluent income brackets, suggesting that those activities and efforts may be related to greater financial means. For example, only female caregivers from households of >$80,000 listed involvement in activities like fundraising and advocacy as part of diabetes-related care. Moreover, female caregivers from households with total incomes of >$80,000 commonly described taking steps to educate school staff or those in the general public about T1D, with only one parent <$80,000 noting such participation in education efforts. One mother from a household with a total income of >$80,000 noted: “I attend school functions to make sure [child’s name] has support for her diabetes.” Another said, “Explaining to family, friends and strangers alike – when necessary – about [child’s name]’s disease and what care she needs. Being [child’s name]’s advocate for school and activities etc.” Another mother from the >$80,000 threshold said in describing the challenges of diabetes “The public’s perception of diabetes is that you ate one too many donuts and that you can be ‘cured’ by eating healthy and exercise. Even magazine articles in the grocery store stands say ‘Cure Diabetes, eat this.’ They should have a difference between type 1 and type 2. Educate, educate, educate!”

Conclusions

An examination of how women from varying SES levels described the work and allocation of diabetes-related care demonstrates important differences and similarities. First, women from less affluent households were more likely to report a shared distribution of labor with partners and used fewer words or emotional language to describe the work related to diabetes care. In the few instances where women from less affluent households elaborated about shared care, they noted the demands of service sector jobs that necessitated their partner’s involvement. Affluent women were more likely to mention a career shift related to T1D. They expounded in greater detail about being the primary provider for care-related demands and also about the work of diabetes care, often evoking emotionally charged language therein. Women from all income thresholds described strain related to caring for a loved one with T1D. Above all, they shared a common omnipresent fear of T1D health complications for their child.

The level of detail afforded to planning for care could be related to the relative ability of more affluent women to devote their time and energy to diabetes care, as well as relative professional positioning that may allow for more flexibility in their work schedule than low-paying, service sector positions. Also, the style of parenting known as “concerted cultivation,” characterized by high levels of involvement (e.g. helicopter parenting) in children’s lives by middle-to-upper class families, may play a role in these accounts [30-32]. Research in this area notes that, given the context of daily life for those who are economically vulnerable, children in working-poor families are less likely to be supervised by adults and are expected to function with greater autonomy at earlier ages [31]. Conversely, affluent children are constantly supervised by adults in highly structured activities and have parents that constantly intervene in the institutions they engage in like school and extracurricular activities [31, 32]. Further, education level is a strong predictor of language use in general: people with higher levels of education use more words in conversation and descriptions [33].

It is beyond the scope of this exploratory study, however, to fully say how much the accounts provided were truly a function of SES. Other limitations of the study include the lack of diversity in terms of race or ethnic minority status, the lack of non-heterosexual partnerships, the lack of data collected from caregivers and children identifying as non-binary genders, and the lack of male caregiver’s accounts. In the cases where there were respondents who were non-white, their patterns in answering questions about the domestic allocation of T1D care fell in accordance with larger trends noted according to SES: in other words, affluent participants, regardless of race or ethnic minority status, answered similarly to others in their income brackets. This is in keeping with research on social capital that notes parenting strategies are highly similar for members of the same SES groupings, regardless of race [31]. However, future studies will benefit from having larger samples that include more diverse perspectives.

Notwithstanding the study limitations, these findings have important implications for clinical care and provide the first detailed account of how women from different SES thresholds describe the domestic allocation of T1D care. For female caregivers of adolescents with T1D, the unequal distribution of labor associated with care-related demands may contribute to outcomes like depression, anxiety, and familial conflict. Furthermore, although some may point to greater freedom for affluent women in changing their careers to accommodate diabetes as an advantage, the loss of a professional identity may contribute to mental health strain as well [34]. Providers should be acutely aware of the toll that care-related demands may take on women and have information readily available on support groups, mental health services, and possibly even volunteer opportunities related to diabetes research so as to allow for professional engagement activities outside the home that may be cathartic.

Equally so, providers should be aware of the realities that mothers from working poor households face. Although less affluent women in this sample were more likely to report shared models of domestic allocation in T1D care, they were employed full-time in menial jobs that are associated with high levels of burnout, low wages, and taxing physical demands [35]. Most importantly, their children had higher HbA1c levels. This finding is in keeping with larger studies on disparate outcomes in T1D for pediatric populations, with children in lower income households or with parents of low education levels suffering from a myriad of poor health indicators [22-26]. Thus, the benefit of male partners sharing in night-checks or “helping out” with diabetes care does not necessarily translate to improved HbA1c levels. It may alleviate other household stressors in ways that were not studied in this research, like reducing diabetes-related conflicts, reducing the likelihood of maternal burnout, or contributing to higher levels of relational intimacy and satisfaction among partners. However, HbA1c is a crucial indicator of vitality and longer-term outcomes in T1D. Thus, more research is needed to explicate features of daily life that vary according to SES that may contribute to maternal and child outcomes in T1D. Moreover, both research and clinical care regarding T1D should make intentional efforts to include a careful consideration of gender, allocation of labor, and parenting strategies in framing, data analysis, and communication with patients and families.

Acknowledgements

Dr. Walker conceptualized and designed the study, performed data analyses, drafted the initial manuscript, and approved the manuscript as submitted. Drs. Schatz, Johnson, and Rohrs provided consultation in study design, reviewed and revised the final manuscript, and approved the final manuscript as submitted. Mrs. Salazar assisted with data analyses, reviewed and revised the manuscript, and approved the final manuscript as submitted. We are thankful for assistance and support provided by Dr. Don Russell (Ph.D.) of Mars Hill University and Janet Silverstein (MD), Kathryn Parker (RD, LD/N), Shannon Lyles (RN, CDE), Kaitlin Sovich (RC1), Donny Weinbrenner (MA, RC3), and Ilyssa Schatz (RA) at the University of Florida for ongoing support throughout this project. Above all, we extend our sincere gratitude to the women who participated in this research. Dr. Walker is the guarantor of this work and takes responsibility for the content of this article. This study was made possible through support from Mars Hill University’s office of the Executive Vice President and related funding through the Faculty Enrichment and Renewal Committee (FERC). This study was first presented in abstract form at the 2016 American Diabetes Association Scientific Sessions.

Conflict of Interest Disclosures

The authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest. The authors report no potential conflicts of interest relevant to this article.

Biography

Ashby F. Walker, PhD University of Florida, Gainesville, FL. afwalker@ufl.edu

Desmond A. Schatz, MD University of Florida, Gainesville, FL.

Cathryn Johnson, PhD Emory University, Atlanta, GA.

Henry J. Rohrs, MD University of Florida, Gainesville, FL.

Kelsey R. Salazar, MPH University of Florida, Gainesville, FL.

DOI: http://dx.doi.org/10.17125/plaid.2017.97

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