Abstract
This study explored the employment and school/daycare experiences of parents of young children with type 1 diabetes (T1D). Parents (n=134) of young children with T1D (ages 1–6) responded to open-ended questions. Responses were systematically reviewed to identify themes. Four parent employment themes were identified: work cessation/reduction, employment flexibility, significant career impact, and financial pressure. Three school/daycare attendance themes were identified: school/daycare structure and setting, previous experience with T1D, and school/daycare importance. Insulin regimen, child age, and family income were related to parents’ decisions. Parents may benefit from clinical programs that assist them with employment and school/daycare decisions.
Keywords: type 1 diabetes, parents, employment, school, daycare
Introduction
The incidence of type 1 diabetes (T1D) among children under the age of 5 is rising, and an increasing number of families are impacted by T1D diagnoses (Patterson, Dahlquist, Gyurus, Green, Soltesz, & EURODIAB Study Group, 2009). Young children are unable to manage their diabetes independently, so parents are responsible for the majority of their child’s daily regimen. Parents of young children with T1D report maintaining a state of ‘constant vigilance’ to minimize acute and chronic complications (Sullivan-Bolyai, Deatrick, Gruppuso, Tamborlane, & Grey, 2002). A recent review identified multiple challenges of parenting young children with T1D across cognitive, behavioral and social-emotional development (Streisand & Monaghan, 2014). Young children are not able to reliably report how their body is feeling, such as experiencing low blood glucose levels, predict how much food they will eat in order to accurately calculate insulin needed, or make decisions such as refraining from eating foods offered by unknowing children and adults.
Parents are likely to have increased concerns about their child’s diabetes when they are unable to personally manage their child’s care, such as during their work day or school/daycare (American Diabetes Association, 2013; Sullivan-Bolyai et al., 2002). Concerns may include who will be responsible for monitoring their child’s nutrition and exercise, identifying high/low blood glucose levels, and providing insulin injections and/or additional emergency treatment. A recent position statement by the American Diabetes Association noted that, despite federal and state legislation related to diabetes care, young children in daycare settings continue to face discrimination, potentially jeopardizing their health and placing increased demands on parents (Siminerio et al., 2014). Thus, families of children under the age of 5 who are not enrolled in kindergarten might have even more challenges regarding diabetes management in the daycare/preschool setting.
Parents’ decisions regarding their employment are likely affected following their young child’s T1D diagnosis, yet there is limited research regarding their working status and employment decisions relating to diabetes. One quantitative study that was not specific to young children indicated that parents of children with diabetes reported similar rates of employment to parents of children without diabetes, but that parents of children with diabetes experienced significantly more work absences as a result of child care needs (Songer, Laporte, Lave, Dorman, & Becker, 1997). In a more recent mixed-methods study with parents of young children with T1D, some mothers who were not employed outside the home noted in qualitative interviews that they stopped working altogether in order to accommodate their child’s diabetes needs (Sullivan-Bolyai, Knafl, Deatrick, & Grey, 2003). Notably, advances in technology have provided more flexible diabetes management options since these studies were completed, so results may differ among samples of parents recruited for studies at this time; this limitation speaks to the need for additional research on the impact of T1D on employment decisions.
It is likely that parents are concerned about their young child’s school/daycare experiences and how their child’s diabetes will be managed while away from home. Although there are a few research reports about the school experiences of older children and adolescents with T1D (e.g., Driscoll et al., 2014), only one report has investigated the school/daycare experiences of young children with diabetes. Many parents were not confident in school/daycare personnel’s ability to manage diabetes and some chose not to enroll their child in school/daycare due to concerns about diabetes management needs (Herbert et al., 2015). Specific T1D characteristics, such as an intensive medical regimen and history of diabetes-related unconsciousness or seizures, were related to more school/daycare concerns. However, quantitative data provide limited detail and insight regarding parents’ decisions about school/daycare.
Decisions related to working outside of the home and enrolling a child with T1D in school/daycare are complicated, and concerns about adequate diabetes caregiving must be coupled with the financial burden of diabetes. Indeed, up to one third of parents of children with T1D reported that their family’s financial status was significantly burdened by diabetes, with the majority reporting that out-of-pocket expenses far exceed $1000/year (Katz, Laffels, Perrin, & Kuhlthau, 2012). Family income may impact decisions about school/daycare enrollment or employment outside of the home. Additional data are needed to further understand parents’ decisions in these areas. The goal of the current study was to build on prior work, focusing specifically on the young child with T1D population. We explored parents’ responses to open ended questions in order to better understand their concerns related to their employment and their child’s enrollment in school/daycare.
Methods
Participants
Parents of children with T1D were recruited from three tertiary care endocrinology services, two in the Mid-Atlantic region and one in the Midwest, to participate in a randomized controlled trial (RCT) investigating the impact of a behavioral intervention to promote parental management of T1D in young children. Participants were self-identified primary caregivers (i.e., the caregiver responsible for the majority of diabetes management), hereafter referred to as ‘parents,’ of children between the ages of 1 and 6 years with a diagnosis of T1D for at least 6 months. Eligibility criteria included parent fluency in English, absence of other child chronic medical conditions or developmental disorders, and access to a telephone. Parents (n=285) were preliminarily identified as eligible through review of clinic schedules and were mailed letters detailing the study. Sixty-six parents were unable to be contacted, 16 did not meet inclusion criteria, and 36 declined to participate. A total of 167 parents provided verbal consent to participate by phone. Of these parents, 33 failed to complete baseline measures or written consent, thus, the final sample included 134 parents. Child age, sex, and illness duration did not differ between parents who agreed to participate (n=134) and parents who could not be reached, were not eligible, or did not agree to participate (n=151); all ps > .05.
Procedure
Parents who met initial eligibility criteria were mailed a recruitment letter with details about the study and a postcard that could be returned if they did not wish to be contacted by the study team. Parents who did not return a postcard were contacted via phone by a trained research assistant approximately two weeks later, further screened for eligibility, provided additional study details, and completed verbal consent. Within one month of verbal consent, participants completed baseline questionnaires by phone, and within one month of baseline questionnaire completion, participants met with a study team member during their regularly scheduled clinic appointment to provide written consent and receive a modest incentive. A research assistant also reviewed medical charts at the time of the clinic appointment. Each recruitment site completed eligibility screening, recruitment, written consent, and medical chart review for HbA1c for their site; all baseline phone questionnaire interviews were completed by the primary study site. Study team members were trained to complete data collection by the primary investigator and/or research team coordinator; they first observed/listened to interviews/informed consent sessions, then were observed while conducting these procedures, and finally were approved to conduct them on their own. This study was approved by each institution’s Institutional Review Board.
Measures
Parents completed sociodemograhic and medical questionnaires during a phone interview with a research team member, which assessed parent/child age, gender, race/ethnicity, income level, marital status, T1D regimen, and illness duration. Parents provided information about their employment and their child’s school/daycare enrollment as well. Clinical experience and limited extant research regarding the experiences of this young age group led the research team to include 2 open-ended questions about employment and school/daycare. The team hoped that responses would generate ideas for topics to include in future clinical interventions. Parents responded to the following questions: “Do you think that your child’s diabetes has affected your decision about working outside the home? If so, how?” and “Do you think that your child’s diabetes has affected your decision about enrolling your child in school or daycare? If so, how?” Parents’ responses were recorded by the interviewers, who queried for clarification when appropriate. Interviewers were trained by the primary investigator and/or research team coordinator regarding when and how to query participants for more information.
Data Analysis Plan
A framework analysis approach was used to code interviews and develop a chart of participants’ responses (Gale, Heath, Cameron, Rashid, & Redwood, 2013). Study team members took extensive field notes during baseline data collection interviews. Two study team members, who had previous experience with qualitative research methodology, yet had not conducted the interviews, reviewed parents’ responses to the two open-ended questions. Inductive techniques were used to identify common themes and develop theme definitions. Two additional study team members, who had also not conducted parent interviews, were trained by the research team coordinator to review all parents’ responses and code responses according to the theme definitions. The research team coordinator reviewed all codes and discrepancies were resolved by consensus agreement. Descriptive statistics were conducted for overall participant demographic/medical characteristics. Descriptive statistics were conducted for the overall open-ended question themes as well as according to insulin regimen (conventional versus intensive), child age (< 5 years versus ≥ 5 years), and family income (< $50,000 versus ≥ $50,000) in order to provide initial data regarding the factors that impact parents’ decisions.
Results
There were 134 parents enrolled in this project; 90% were mothers, 84% were married, and 76% had a household income ≥$50,000. Children had a mean age of 5.32 years (SD = 1.34), 49% were female, and 78% were Caucasian. Children had been diagnosed with T1D for an average of 2.00 years (SD = 1.24) and the majority (72%) were managed on an intensive insulin regimen (multiple daily injections or insulin pump); use of a conventional insulin regimen was not restricted to only one recruitment site. Mean HbA1c was 8.13% (SD = 0.88); which was within the target range of an HbA1c less than 8.5% for children age 6 years and under that was provided by the American Diabetes Association until recently (American Diabetes Association, 2011). See Table 1 for additional demographic/medical characteristics of the sample.
Table 1.
Demographic/Medical Information (n = 134)
| Percentage | M | SD | Range | |
|---|---|---|---|---|
| Child age (years) | 5.33 | 1.34 | 2.01–6.98 | |
| Child sex (% female) | 49.30 | |||
| Parent age (years) | 36.80 | 5.93 | 22.21–60.05 | |
| Parent sex (% female) | 89.50 | |||
| Parent ethnicity (% Caucasian) | 78.40 | |||
| Parent marital status (% married) | 83.50 | |||
| Household income (% ≥$50,000) | 76.10 | |||
| Illness duration (years) | 2.00 | 1.24 | 0.54–5.95 | |
| HbA1c | 8.13% | 0.88% | 6.40–11.00% | |
| Insulin regimen (% intensive) | 72.00 |
Parent Employment
Most parents (71%) were employed full time or part-time. Parent employment status was not related to marital status, p > .05. Many parents (60% of all parents) reported that their child’s diagnosis affected their decision to work outside the home; these parents provided additional information about how their child’s diagnosis affected their employment decision. Four themes emerged regarding parents’ employment decisions: employment cessation, reduction, or other change, employment flexibility, significant career impact, and financial pressure. See Table 2.
Table 2.
Themes, Definitions, and Examples (n = 134)
| Topic | Theme | Definition | Conventional Regimen (n = 37) | Intensive Regimen (n = 97) | Child Age < 5 Years (n = 48) | Child Age ≥ 5 Years (n = 86) | Income < $50,000 (n = 31) | Income ≥ $50,000 (n = 103) |
|---|---|---|---|---|---|---|---|---|
| Impact of T1D on parents’ work decisions | Employment Cessation, Reduction, or other Change | Parents stop working due to their child’s T1D and/or parents switch their work hours from full-time to part-time due to their child’s T1D | 27% | 21% | 27% | 20% | 23% | 22% |
| Employment Flexibility | Parents continue working because their job allows them to work from home, leave work when needed, and/or be contacted about their child’s T1D when necessary | 14% | 15% | 6% | 20% | 3% | 18% | |
| Significant Career Impact | T1D negatively affects parents’ job performance and opportunities for job advancement | 5% | 7% | 6% | 7% | 10% | 5% | |
| Financial Pressure | Parents continue to work after their child’s diagnosis due to monetary concerns related to T1D care and health insurance | 0% | 6% | 4% | 5% | 0% | 6% | |
| Impact of T1D on parents’ school/ daycare decisions | School/Daycare Structure and Setting | Parents consider the way the school/daycare is set up and distance from home/work | 11% | 25% | 25% | 19% | 6% | 25% |
| Previous Experience with T1D | Parents want to enroll their child in schools/daycares with prior knowledge about T1D | 8% | 12% | 10% | 12% | 10% | 12% | |
| Importance of School/Daycare Experience | Parents believe that their child should attend school/daycare regardless of T1D diagnosis | 5% | 8% | 8% | 7% | 6% | 8% |
Twenty-two percent of all parents in our sample reported employment cessation and/or reduction, and 15% reported that they continued to work but required flexibility in order to maintain responsibility for their child’s T1D care. One parent reported that she wanted to work full-time, but was working part-time because of diabetes. Seven percent of parents perceived a negative impact of T1D on their careers, including job performance and job advancement opportunities. One parent noted that she would have followed a more aggressive career path if her child had not been diagnosed with diabetes. In addition, 4% of parents cited T1D financial strain and health insurance needs as important reasons to maintain employment, despite some of them wanting to be stay-at-home caretakers. An additional 9% of parents noted other concerns related to employment, such as worrying about their child despite wanting to continue working or switching careers in order to learn more about diabetes. One mother reported that she had been a stay-at-home caretaker prior to her child’s diagnosis, but decided to become an emergency medical technician in order to better understand how to help her child.
Although inferential analyses were not completed due to the limited n in each category, there were some suggested patterns of variability in the ways diabetes affected parents’ decisions depending on their child’s age and their family income. For example, similar percentages of parents of children under the age of 5 years (27%) and parents of children 5 years and older (20%) reported decreasing or stopping employment due to T1D; however, more parents of older children (20%) than younger children (6%) reported a need for employment flexibility. More parents with a family income equal to or greater than $50,000 (18%) reported a need for employment flexibility than parents with a family income less than $50,000 (3%). See Table 2 for details.
School/Daycare Enrollment
The majority of children (86%) were enrolled in school/daycare, and about half (55%) were enrolled prior to T1D diagnosis. Enrollment in school/daycare was not related to marital status, p > .05.Forty-four percent of all parents reported that their child’s diagnosis affected their enrollment decision; these participants elaborated on their responses regarding the impact of T1D on their school/daycare decisions and three themes were identified: school/daycare structure and setting, previous experience with T1D, and importance of school/daycare experience. See Table 2.
Twenty-one percent of all parents considered the school/daycare setting and structure when making a decision, such as classroom size, school/daycare day length, public versus private funding, and the school/daycare’s distance from home or work. One mother reported that she selected a school with shorter hours and smaller class size; whereas another mother noted that it was important that daycare be close to work. The school/daycare’s previous T1D experience also affected 11% of parents’ decisions. Several parents noted that they did not want their child to be the first student with diabetes. Finally, 7% percent of parents also thought it was important for their child to attend school/daycare regardless of T1D. One parent stated that she did not want her child to grow up thinking she can use diabetes as an excuse.
There were some suggested patterns of variability in the way diabetes affected parents’ decisions regarding school/daycare depending on their child’s regimen and family income. More parents of children on an intensive insulin regimen (25%) cited the school/daycare’s setting and structure as a factor in their enrollment decision than parents of children on a conventional insulin regimen (11%). Similarly, more parents with a family income equal to or greater than $50,000 (25%) cited the school/daycare’s setting and structure as a factor in their enrollment decision than parents with a family income less than $50,000 (6%). See Table 2 for details.
Discussion
Parents’ responses to these open-ended questions provide preliminary evidence that the complex requirements of young children’s diabetes management affect parents’ decisions about periods of time when they are unable to personally manage their child’s diabetes, such as during work and school/daycare. Parents have to make thoughtful decisions about employment based on how it will affect their child’s daily medical care and how their child’s medical needs will affect family finances. Parents in this sample reported changes in their employment status, a need for employment flexibility, a significant career impact, and financial pressure related to their child’s T1D diagnosis. Previous research indicated that parents of children with T1D reported more work absences than parents of healthy children and sometimes discontinued working altogether, which appears to be consistent with the results in this study, as parents noted a need for additional schedule flexibility and/or work cessation (Songer et al., 1997; Sullivan-Bolyai et al., 2003). Financial pressure appeared to be less of a concern for parents in this sample, although that may be related to the fact that this sample included primarily married parents with a higher family income. Similarly, other research has not noted parents’ concerns about the overall impact of T1D on their career trajectories, but that may be related to the sample’s demographic characteristics.
Parents have to balance their concerns about T1D care during school/daycare with their beliefs about the importance of academic and social experiences when making decisions about school/daycare enrollment. Parents reported that the structure/setting and school’s previous experience with T1D had an impact on their decisions, but that also their personal beliefs played a role in this process. There is little research on young children with T1D and school, but these results are consistent in that some parents elected to not enroll their child in school/daycare, and that the school’s ability to spend the necessary time addressing their child’s medical needs is a large factor (Driscoll et al., 2014; Herbert et al., 2015).
This study is among the first to explore the impact of young children’s T1D on parents’ employment and school/daycare decisions. Our sample is predominantly Caucasian. Although this is representative of the hospitals’ diabetes clinic populations and reflects the higher incidence of T1D among Caucasians (SEARCH for Diabetes in Youth Study Group et al., 2006), some families were excluded from our sample (i.e., non-English speaking families; families without access to a phone; families whose children were more recently diagnosed with T1D). It is likely that these families’ experiences differ from the experiences reported by our sample. There are several other limitations that offer directions for future research. Only primary caregivers responded to the open-ended questions; future research should include perspectives from other caregivers, employers, and school/daycare staff. More thorough delineation of children’s daycare settings are needed as well. For example, some daycare settings may be licensed educational programs, whereas other daycares may be home-based, non-educational programs; our data did not include these details and parents’ perspectives may vary depending on the exact nature of the daycare setting. This study included only two open-ended questions and responses were not audio-recorded and/or transcribed verbatim, so there is risk that the data were not recorded accurately. Furthermore, parents in this sample may have been subject to history bias, as they were asked to recall their decision making process and were primed to discuss T1D as part of this project. Prospective data should be collected as parents make decisions about employment and school/daycare. A qualitative evaluation that uses transcripts of parents’ responses is needed regarding how parents of young children with T1D make employment and school/daycare decisions, their impact on overall family structure and functioning, and how they change over time as diabetes needs change. Examination of the interplay of employment decisions and school/daycare decisions is warranted.
Implications for Practice
Providers who work with young children with T1D and their families are advised to consider parent employment and school/daycare decisions when providing diabetes medical care. Parents’ decisions likely affect both the number of caregivers who need diabetes education and parents’ psychosocial functioning, especially if employment and school/daycare experiences differ from what parents envisioned for their child and future. Parents would likely benefit from clinical programs, such as print/online materials, multi-media presentations, education classes, and parent networking events that help them make employment and school/daycare decisions, support their decisions by incorporating employment and school/daycare needs into T1D nutrition and regimen decisions and offering handouts and resources for schools/daycares, and connect them with other parents of young children with T1D with similar experiences (Herbert et al., 2015).
The results of this study reveal important areas of concern for parents of young children with T1D related to their employment and their children’s school/daycare experiences. Additional research is needed to further our understanding of the relationships among young children’s T1D, parent employment, and school/daycare. Clinical programs should have opportunities for parents to discuss their employment and school/daycare concerns with their child’s diabetes care provider and provide resources that support them in their decisions.
Acknowledgements
The research presented in this manuscript was supported by NIH DK080102 awarded to Randi Streisand, Ph.D.
Contributor Information
Linda J. Herbert, Division of Psychology and Behavioral Health, Center for Translational, Science, Children’s National Health System, 111 Michigan Ave NW, Washington, DC 20010, lherbert@cnmc.org.
Katheryne Wall, Center for Translational Science, Children’s National Health System, 111 Michigan Ave NW, Washington, DC 20010, wallkatie12@gmail.com.
Maureen Monaghan, Division of Psychology and Behavioral Health, Center for Translational Science, Children’s National Health System, 111 Michigan Ave NW, Washington, DC 20010, mmonagha@childrensnational.org.
Randi Streisand, Division of Psychology and Behavioral Health, Center for Translational Science, Children’s National Health System, 111 Michigan Ave NW, Washington, DC 20010, rstreis@childrensnational.org.
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