Parent Perspectives of School/Daycare Experiences in Young Children Newly Diagnosed With Diabetes

Abstract

Objective

A central part of family adjustment to a new diagnosis of type 1 diabetes (T1D) is integrating T1D management into the child’s school/daycare. This may be particularly challenging for young children who rely on adults for their diabetes management. This study aimed to describe parent experiences with school/daycare during the first 1.5 years following a young child’s T1D diagnosis.

Methods

As part of a randomized controlled trial of a behavioral intervention, 157 parents of young children with new-onset (<2 months) T1D reported on their child’s school/daycare experience at baseline and at 9- and 15-month post-randomization. We used a mixed-methods design to describe and contextualize parents’ experiences with school/daycare. Qualitative data were collected via open-ended responses, and quantitative data were collected from a demographic/medical from.

Results

While most children were enrolled in school/daycare at all time points, over 50% of parents endorsed that T1D affected their child’s enrollment, rejection, or removal from school/daycare at 9 or 15 months. We generated five themes related to parents’ school/daycare experiences: Child factors, Parent factors, School/Daycare factors, Cooperation between Parents and Staff, and Socio-historical factors. Parents of younger children and those with lower subjective socioeconomic status were significantly more likely to endorse challenges with school/daycare enrollment.

Conclusions

School/daycare settings present challenges for parents of young children with T1D. Changes may need to occur across contexts to support early childhood education, including advocacy resources for parents to navigate school policies, increased training for school staff, and healthcare team outreach initiatives to parents and schools.

Introduction

For families of young children (≤6 years of age) newly diagnosed with type 1 diabetes (T1D), an important part of the adjustment process is integrating T1D management into daily routines, including at school or daycare (Jackson et al., 2015; Monaghan et al., 2022). Parents describe this as the most difficult stage of their adjustment to T1D, beyond the diagnosis or initial management at the hospital (Heilporn et al., 2019). For young children, the full responsibility for T1D management—including blood glucose monitoring, insulin calculation and administration, planning food intake, and observing the child’s safety—typically falls exclusively to parents, often with little assistance from other caregivers (Commissariat et al., 2020).

Young children have characteristics that can make T1D management particularly challenging, including inconsistent food preferences, difficulty recognizing and verbalizing symptoms of hypoglycemia or hyperglycemia, behavioral difficulties, frequent illness, and unpredictable levels of physical activity (Monaghan et al., 2022; Pierce et al., 2017). As inadequate T1D management can lead to potential adverse acute (e.g., hypoglycemia, seizure, diabetes ketoacidosis) and chronic (e.g., neuropathy, retinopathy, cardiovascular disease) consequences, parents must be particularly attentive and careful toward monitoring their young child’s glycemic levels and safety (Monaghan et al., 2022). Indeed, during the newly diagnosed period, parents of young children report increased psychological distress and high levels of vigilance related to the child’s T1D care (Sullivan-Bolyai et al., 2003).

Given the substantial adjustment and management challenges during the newly diagnosed period, parents often have concerns about other caregivers being responsible for T1D tasks (Commissariat et al., 2020). While parents have primary responsibility for managing T1D, the community context (including school and daycare) is also important in early childhood (Modi et al., 2012). Educational and childcare settings play a central role in young children’s development, providing them a context in which they can learn valuable interpersonal, self-regulation, and pre-academic skills. School personnel need to have adequate T1D knowledge and management skills to ensure the child’s safety while at school (Smith et al., 2019).

Parents of children with T1D face challenges with navigating access to appropriate school and childcare options for their child with T1D. Most of the research on this topic has taken place with parents of youth with established (usually ≥6 months) diabetes. For example, parents of young children reported frustration with identifying and educating staff who are willing and able to learn about management (Commissariat et al., 2020; Herbert et al., 2015). Parents of children aged 5–17 years have identified concerns regarding school nurses’ availability, staff’s misunderstandings around care [e.g., incorrect insulin dosage, restrictions to medical supplies, food, or water during class, and exclusion from field trips and extracurricular activities due to an inadequate number of trained staff (Smith et al., 2019)]. There is documentation of schools and daycares denying access to children (age 5–17 years, newly diagnosed and established) because staff found T1D too complex to manage (Heilporn et al., 2019). These events persist despite federal law (i.e., Section 504 of the Rehabilitation Act of 1973; Americans with Disabilities Act; Individuals with Disabilities Education Act) prohibiting federally funded programs from discriminating against youth with chronic medical conditions and mandating students’ right to receive accommodations and medical coverage necessary to participate in school and school-sponsored, non-academic activities (Jackson et al., 2015).

There is relatively little qualitative research on the experiences of parents of young children with new onset T1D pertaining to the school/daycare context. Herbert et al. (2017) reported that T1D affects parent decisions about school and employment among young children with established T1D, yet the very challenging newly diagnosed period was not studied. Pierce et al. (2017) found support for a social-ecological model of parents’ daily experiences raising children under age 9 with T1D. Difficulty finding daycare and schools that can appropriately address their child’s medical needs were among the challenges they reported. Heilporn et al.’s (2019) study on child adjustment in T1D had limited findings about school, as this was not the primary focus of the study. Given conclusions about post-diagnosis being a uniquely challenging adjustment period, more in-depth research with this population is warranted.

The purpose of the current study was to describe and characterize parents’ experiences related to school/daycare for young children over approximately the first 1.5 years following new-onset T1D. This period is critical to understand parents’ perspectives as they adjust to integrating T1D across various aspects of life, including having their child in school/daycare. We used a mixed-methods design to both quantify parents’ experiences with school/daycare and contextualize those experiences through qualitative analysis. These data are needed to inform clinical and school-based efforts to support adjustment and facilitate easier access to early childhood education among families.

Based on Herbert et al.’s (2017) data indicating 44% of parents of young children with established T1D endorsed that T1D impacted their decision to enroll in school/daycare in general, we expected a similar proportion of families of newly diagnosed young children to endorse the specific challenges related to school/daycare enrollment. With a social-ecological theoretical foundation (Bronfenbrenner, 1979; Modi et al., 2012) guiding the qualitative analysis, we anticipated generating themes reflecting child, parent, and community factors related to school experiences. As is standard for qualitative research (Wu et al., 2019), there were no a priori hypotheses.

Methods

Participants and Procedure

This was a secondary analysis of data from an IRB-approved, two-site randomized clinical trial at Children’s National Hospital (Washington, DC) and Texas Children’s Hospital (Houston, TX). The trial evaluated a behavioral intervention to support parents of newly diagnosed young children with T1D (First STEPS; Hilliard et al., 2017, 2022). Study staff used electronic medical records to identify families meeting study eligibility criteria: primary caregivers of children aged 1–6 years who were diagnosed with T1D within the previous 2 months and fluent in English. Parents or children with co-morbid significant health, mental health, or cognitive conditions that would have impeded study participation or substantially increased diabetes management challenges (e.g., significant intellectual disability) were not eligible. Families who were pre-screened to potentially meet inclusion criteria were approached during the child’s hospital admission for T1D or via letter and telephone shortly after discharge to confirm eligibility, describe the study, and obtain informed consent. Of the 364 families who were potentially eligible, 217 families met full inclusion criteria and verbally agreed to participate, and 158 completed written consent and baseline questionnaires. One participant was later determined ineligible and withdrawn, resulting in N = 157. Mean time from diagnosis to baseline data completion was 29 ± 15 days. Following baseline, participants were randomized 3:1 intervention to usual care control, for 9 months, with participants in the intervention arm receiving a combination of peer parent coaching, telephone-based cognitive behavioral counseling, and/or consultations with a diabetes educator and psychologist, depending on response to the intervention (Hilliard et al., 2017).

Data Collection

Participants in both study arms completed data collection at baseline and follow-ups at 9- and 15-month post-randomization. These time points were post-intervention, and data were used from participants in both study arms. Nearly all participants (N = 153, 97%) completed the 15-month follow-up assessment. Parents received incentives (financial and small retention items; Shneider et al., 2021) for completing questionnaires. The design of this secondary analysis of data about school employed a convergent parallel mixed-methods approach, in which qualitative and quantitative data were collected simultaneously, analyzed separately, and interpreted in an integrated fashion (Creswell & Plano Clark, 2011). Data are available from authors by request.

Quantitative Data

Participants completed questionnaires via a centralized REDCap database (Harris et al., 2009). Parents reported on demographics and medical information (e.g., race and ethnicity per NIH reporting categories, family structure) at baseline. Socioeconomic data were collected at baseline in three ways: parent ratings on a scale of 1–100 how much better off they were than others (Adler et al., 1994), household annual income (categories collapsed to > or <$100,000 for analysis), and child health insurance (public or private). Medical data, including date of T1D diagnosis, presence of DKA at diagnosis, and use of an insulin pump and/or continuous glucose monitor (CGM) at baseline and follow-ups were collected by study staff via medical chart review.

At baseline, participants reported on school/daycare setting and attendance frequency. At 9- and 15-month follow-ups, participants answered a questionnaire about their child’s T1D care at school/daycare. Parents reported on type of school/daycare, time child spent at school/daycare, types of secondary caregivers providing T1D care at school/daycare, perception of staff receptivity to learning about T1D (i.e., “not at all”, “a little bit”, “somewhat”, “pretty”, or “very” receptive), and how often parents were attending school/daycare to assist with T1D (days per week). They were also asked three questions about their child’s enrollment in school/daycare in relation to T1D, with yes/no response options: (a) Has your child’s diabetes affected your decision about enrolling them in school or daycare?; (b) Has your child ever been turned down for enrollment or asked to leave a school or daycare program because of diabetes?; and (c) Have you ever removed your child from a school or daycare program because of difficulty with diabetes management?

Qualitative Data

After each of the three questions about school/daycare enrollment related to the child’s T1D, there was an open-ended prompt for participants to provide a text response: “if so, why?” Parents were not required to respond. N = 83 participants answered at least one of the free-text questions about school/daycare experiences at 9- or 15-month time points. Text responses to these questions, which ranged from single-word responses to multiple sentences, were used in qualitative analyses.

Data Analyses

Quantitative

Quantitative analyses used SPSS (Version 28) software. Descriptive statistics, including means, standard deviations, frequencies, and percentages, were conducted for demographic, medical, and school/daycare-related variables. Because these data were from an intervention trial, we explored whether the variables of interest differed by intervention arm using t-tests. Because there were no intervention group differences, we did not compare or control for intervention groups in any subsequent analyses.

Qualitative

Qualitative analyses were conducted using NVivo Software (version 11). The study team approached the qualitative analyses with a critical realist ontological orientation and a post-positivist epistemological orientation (Braun & Clarke, 2021). Reflexive thematic analysis was used to identify codes from the open-ended responses and generate themes and patterns of meaning (Braun & Clarke, 2021). This approach involves the following steps: (a) familiarization with the data, (b) coding, (c) generating initial themes, (d) reviewing and developing themes, (e) refining themes, and (f) writing up analyses and results. Given overlap in how participants answered the three open-ended questions at the 9- and 15-month time points, responses were aggregated across the questions and both follow-up time points. The first author (pediatric psychology fellow) and last author (diabetes psychologist) read each response, developed a list of preliminary codes based on common concepts, and developed a codebook with definitions for each code. A research coordinator (school psychology doctoral student) double-coded 100% of the responses by applying the codebook. In an iterative process, the first author, research coordinator, and last author reviewed coding patterns, revised and created new codes based on new concepts that were generated from the data, and re-applied the final codebook. The first author and research coordinator continued the review process until there were six discrepancies, which were resolved by the last author.

The first and last authors then generated themes based on grouping the codes into meaningful categories of responses. This process incorporated a hybrid approach of both inductive and deductive reasoning (Braun & Clarke, 2021). We reviewed text excerpts for each code, considering prior literature about families of young children with T1D and children with T1D in the school system and the authors’ combined medical and psychological clinical experiences related to families of youth with T1D (deductive). From this review, we organized the patterns of codes that we generated from the data (inductive) into themes. We used a social-ecological framework to organize and interpret the themes, and to present the themes graphically (Figure 1). The research team, which included six additional clinical researchers/psychologists, one pediatric endocrinologist, and one pediatric diabetologist, reviewed the themes for write-up to ensure cohesiveness, clinical applicability, and contributions to the field.

Figure 1.

Social-ecological model of school/daycare themes and subthemes.

Integration of Quantitative and Qualitative

We used a convergent parallel analysis approach for the mixed-methods analysis, in which we considered the quantitative and qualitative results together and how they informed one another (Creswell & Plano Clark, 2011). Themes that were generated from the open-ended responses were used to identify exploratory hypotheses for inferential testing in the survey data based on our demographic and medical form (i.e., that social-ecological factors identified in the qualitative analyses would be related to endorsement of any of the three school/daycare enrollment questions). Specifically, demographic and medical variables for child age, parent SES (subjective ratings, income, insurance), and use of T1D technology for management (CGM or pump) were available. Thus, we conducted post hoc t-tests and chi-squared analyses to explore associations with these three variables and endorsement of the enrollment questions. Responses were aggregated across 9- and 15-month follow-up data due to the similar rates of endorsement across time points.

Results

Quantitative

Table I summarizes the sample’s demographic and medical characteristics for the full sample and for the subset of participants who provided at least one qualitative response to the school questions. At baseline, 67% of children were enrolled in school/daycare, 73% at 9-month follow-up, and 70% at 15-month follow-up. Table II displays parent reports of how often their child attended school/daycare at each time point, frequency of parents attending school/daycare to assist with T1D care, and perceptions of school staff receptivity to learning about T1D. Across both follow-up time points, 53% of parents endorsed that T1D had affected school/daycare decisions (i.e., endorsed yes to any of the three yes/no questions). At the 9- and 15-month time points, 34% and 41% of parents endorsed their child’s T1D had impacted their decision to enroll them in school/daycare, respectively. At each time point, 15% endorsed their child having been turned down or asked to leave school/daycare because of T1D, and 13% endorsed having removed their child from school/daycare due to difficulties with T1D management. The majority of parents (87% at 9 months and 89% at 15 months) rated their child’s teacher or staff as “pretty or very receptive” to parental instruction on T1D care in the school.

Table I.

Clinical and Demographic Characteristics at Baseline

	M ± SD or % (n)
	Full sample (N = 157)	Qualitative subset (N = 83)
Demographic characteristics
Child age, years	4.5 ± 1.7	4.1 ± 1.7
Child gender, female	55% (86)	61% (51)
Child race/ethnicity
Non-Hispanic White	60% (93)	57% (47)
Non-Hispanic Black	15% (23)	16% (13)
Hispanic/Latinx	15% (23)	15% (12)
Asian/Asian American	5% (8)	4% (3)
Multiracial	5% (8)	8% (7)
Primary caregiver role, mothers	90% (141)	94% (78)
Primary caregiver age, years	34.9 ± 7.0	34.2 ± 6.8
Adults in home, two or more	89% (139)	83% (69)
Marital status, married	76% (117)	68% (56)
Subjective SES	57.3 ± 19.7	56.2 ± 20.6
Annual household income, <$100,000	46% (73)	53% (41)
Child insurance
Public/no insurance	27% (43)	28% (23)
Private	72% (112)	72% (60)
Clinical Characteristics
DKA at diagnosis	37% (57)
Insulin regimen
Pump	3% (4)
Injections	97% (153)
Continuous glucose monitor (CGM) use	24% (38)

Table II.

School/Daycare Characteristics at Baseline, 9-Month Follow Up, and 15-Month Follow Up

Characteristic	M ± SD or % (N)
	Baseline	9 Months	15 Months
Attends school/daycare	67 (105)	73 (114)	70 (110)
Full day programa	83 (87)	81 (92)	85 (94)
Half day programa	16 (17)	14 (16)	14 (15)
Decline/Did not answer	1 (1)	5 (6)	1 (1)
School/daycare typea,b
Public school	50 (53)	60 (68)	71 (78)
Private school	30 (32)	25 (29)	22 (24)
Center Daycare	16 (17)	14 (16)	6 (7)
In-home school/daycare	7 (7)	5 (5)	5 (6)
Days per week child attends school/daycare	4.67 ± 0.93	4.82 ± 0.79	4.76 ± 0.98
How often caregiver goes to school/daycare to assist with child’s T1Da
0 days/week		54 (62)	55 (61)
1–2 days/week		27 (31)	28 (31)
3–7 days/week		18 (20)	17 (18)
Did not answer		1 (1)	0 (0)
Parent rating of teacher/staff receptivity to parent instruction on T1D carea
Not at all or a little bit receptive		3 (3)	5 (6)
Somewhat receptive		7 (8)	2 (2)
Pretty or very receptive		87 (99)	89 (98)
Decline/did not answer		3 (4)	4 (4)
Has 504 Plana,c		49 (56)	54 (59)
Parent endorsement of T1D-related school/daycare enrollment challenges d
Child’s T1D affected parent’s decision about enrolling them in school/daycare		34 (52)	41 (63)
Child has been turned down for enrollment or asked to leave school/daycare because of T1D		15 (23)	15 (22)
Parent removed child from school/daycare because of difficulty with T1D management		13 (20)	13 (20)

Note.

^aPercentages calculated based on N enrolled in school/daycare at each time point (baseline N = 105, 9-month follow-up N = 114, 15-month follow-up = 110).

^bParticipants could select more than one type of school/daycare that applied to their child’s experience, as a result percentages are greater than 100%.

^cA 504 plan is a legal document which outlines accommodations for children with disabilities (e.g., T1D) under federal law.

^dPercentages calculated based on total number of participants who participated at each time point (9-month follow-up N = 154, 15-month follow-up = 153).

Supplementary Figures S1–S3 summarize parent reports of who routinely cared for their child’s T1D, who they believed to be capable for caring for their child’s T1D, and who provided T1D care for their child at school/daycare.

Qualitative

We generated five themes that aligned with five levels of a social-ecological framework, which we labeled: Child Factors, Parent Factors, School/Daycare Factors, Cooperation between Parents and Staff, and Socio-Historical Factors. Figure 1 illustrates the themes and subthemes, and we provide descriptions and illustrative quotes for each below.

Theme 1: Child Factors

The Child Factors theme reflects parents’ perceptions of issues related to the child which influenced school/daycare enrollment after T1D diagnosis. The first subtheme was diabetes-specific considerations in the school context, such as difficulties managing blood glucose at school, whether T1D technologies (e.g., insulin pumps, CGMs) helped or hindered T1D management at school, and impact of T1D on learning. A mother of a 7-year-old noted, “She was having too many lows and was missing a lot of class. She also wasn’t getting enough sleep to have to be up at 6am…so we homeschool now.” The second subtheme included concerns related to child development, including the child’s ability to communicate about their T1D or behavior regulation skills. As one parent of a 2-year-old explained, “Because of her age she is not able to inform people about her and her Type 1. Therefore, we cannot let her stay in a daycare with all of the attention she needs…right now.” Some parents delayed enrolling their child in daycare after diagnosis because they felt concerned about their child’s unpredictable eating habits. For example, a mother of a 2-year-old shared, “He needs to be able to verbalize if he will eat everything he is served first before going to child care.”

Theme 2: Parent Factors

Similar to the social-ecological model’s microsystem, the Parent Factors theme related to parents’ psychosocial functioning and how parents took into account their well-being when considering school/daycare enrollment during the newly diagnosed period. The parental worry subtheme reflected parents expressing concern about their child’s safety at school/daycare and mistrust about school staff’s ability to manage T1D. One parent of a 4-year-old girl explained, “I am scared to give someone the control to take care of my child with diabetes.” Another parent of a 6-year-old wrote, “I am worried about enrolling her into the school that will be best for her because I am worried that the new school’s nurse won’t work out.” The second subtheme captured the perceived emotional toll of interacting with the school system to obtain necessary school supports. As one parent of a 6-year-old daughter noted, “It was less stressful for me to homeschool. Lots of paperwork and advocating if in public school.”

Theme 3: School/Daycare Factors

Also within the social-ecological microsystem level, the School/Daycare Factors theme described elements of the school/daycare environment that impacted the family’s school experiences. One subtheme, staff-specific factors, pertained to issues parents were concerned about relating to lack of staff training in T1D, inadequately trained personnel, and staff discomfort implementing T1D care. Parents emphasized the importance of staff having prior experience with T1D. A parent of a 6-year-old clarified, “We would like to put him into after school daycare, but no daycares around us have ever cared for a T1D, and I would prefer that my son not be a guinea pig for the staff of the day care to ‘learn’ how to care for a [child with] T1D.”

Many parents described barriers to finding a school/daycare with any personnel appropriately trained in T1D management. As one parent of a 3-year-old noted, “Trying to find a preschool that would take him has proven to be hard. Many state that they don’t have a nurse on campus.” One parent recalled switching their 7-year-old to a different school because inadequate medical care was leading to potentially harmful consequences: “[The] school asked him to leave because they were not equipped to handle his diagnosis. They were allowing [him] to inject his insulin with no supervision.”

The school/daycare policies and administration subtheme included parents’ perceptions of school rules and regulations and infrastructure (e.g., classroom size, teacher to student ratio) that impacted their child’s school/daycare enrollment after being diagnosed. Several parents expressed frustration that the school administration required them to be present during the daytime to assist with managing their child’s T1D, a routine which one parent of a 3-year-old boy described as “unsustainable”:

“The school was not receptive to obtaining a 504 plan. The school nurse kept saying that I should home school my child. She also stated that I would need to come to the school on days when she was not there and on field trip days because she does not attend trips, nor is she comfortable with the CNA [certified nursing assistant] giving injections”

Within this subtheme, parents highlighted discriminatory practices at schools/daycares that limited children’s access to school and affiliated programs due to T1D diagnosis. A parent shared that her 5-year-old’s “initial daycare asked him to leave and then accommodated when they found out that was illegal.” A parent of a 4-year-old recalled, “She was already enrolled and the school did not want her to come back. I had to fight for her right to come back. They will not allow her to be enrolled in the after school program so we are having a hard time finding someone to pick her up from school while we are at school/work.”

Theme 4: Cooperation between Parent and Staff

The Cooperation between Parent and Staff theme reflected positive interactions between caregivers and school/daycare personnel related to T1D care, and active participation of parents with T1D management in the school/daycare setting. This theme aligns with the mesosystem in a social-ecological framework. The communication between primary caregivers and staff subtheme captured parents’ appreciation for connecting directly with school personnel about their young child’s T1D. A parent explained the decision to enroll their 3-year-old in a small, private school: “Today he is little, so we need a staff that will be fully committed to be in almost constant contact with us to adjust BG [blood glucose] levels with carbs or insulin.” The accessibility to child’s school/daycare subtheme incorporated parents’ desire to be actively involved in their child’s T1D while at school/daycare. One parent of a 3-year-old shared, “I chose a co-op school knowing that because I would be in the parking lot monitoring anyways, it would be another opportunity for me to be in involved in her school.”

Theme 5: Socio-historical Factors

Similar to the social-ecological model’s macrosystem and chronosystem, the Socio-historical Factors theme illustrated broader, contextual considerations beyond the family and school/daycare systems. The finances subtheme reflected how socioeconomic status, in part, determined school/daycare enrollment outcomes. Parents discussed how limited financial resources restricted the already limited availability of school/daycare options for their child with T1D. One parent of a 4-year-old reported, “I can’t afford the places that will take him.” Parents weighed costly school choices with the impact of T1D on attendance. A parent of a 3 year-old boy said, “Tuition is expensive and we would worry about missing days, which are nonrefundable due to possible diabetes related issues.”

For parents who completed surveys after March 2020 (N = 21), a COVID-19 Pandemic subtheme was generated. This subtheme contextualized how parents were sensitive to their child with T1D being especially vulnerable to illness, and factored their concern for safety during the pandemic into school/daycare decisions. Many parents simply wrote “COVID” as a reason for why they removed their child from school/daycare. As one parent of a 6-year-old specified, “We are doing virtual school because of the concerns with T1D and Covid; I don’t want him going to school as a diabetic with the pandemic going on.”

Integration of Qualitative and Quantitative

To explore whether the qualitative subtheme of Child Development was also evident in the quantitative results, we conducted a post hoc t-test of endorsement of any of the three quantitative school/daycare enrollment questions by child age. Parents who endorsed that T1D impacted their decision around school enrollment had children that were significantly younger (4.2 ± 1.7 years) than those who did not report that T1D impacted their enrollment decision (4.9 ± 1.4 years; t_144.13 = 2.657, p = .009). To explore the qualitative subtheme of Diabetes-Specific Factors, we conducted a post hoc chi-squared test of endorsement of the three school/daycare questions by use of an insulin pump and/or CGM at baseline. There were no differences (all p’s > .05). To explore the qualitative Finances subtheme, we conducted a t-test and chi-squared tests of endorsement of the three school/daycare enrollment questions by the three measures of SES. Parents who removed their child from school due to T1D-related issues had lower subjective SES (50.9 ± 18.0) than those who did not endorse this question (59.2 ± 21.2; t₁₄₆ = 2.102, p = .037). There were no differences based on annual household income or child health insurance (p’s > .05).

Discussion

In line with other social-ecological frameworks of pediatric T1D (Pierce et al., 2017; Wagner et al., 2019), families of young children faced challenges with school/daycare across child, parent, school/daycare, and socio-historical levels over the first 1.5 years after diagnosis. Our findings that approximately 50% of families endorsed at least one concern about T1D impacting school/daycare enrollment soon after diagnosis is concordant with prior research with children with established T1D (Herbert et al., 2017). This study’s extension of those rates to the new onset period highlights what a large group of parents of young children struggle with their child’s enrollment in school/daycare while simultaneously adjusting to T1D. In addition to instances of outright discrimination, parents reported emotional, time commitment, and financial burdens associated with navigating T1D management in the early education system. Parents made a series of decisions related to school/daycare over time, including whether to enroll, which settings or programs (private, public, home-school, after-school activities, camps) are best for them and their child, and how to handle situations where their child is not safe or welcome due to their T1D needs. These multiple decision points require continuous re-evaluation, which may add to parents’ emotional burdens.

The integration of quantitative and qualitative data revealed that parents of younger children made different education decisions post-diagnosis than older children and highlighted the robustness of the Child Development subtheme. Adjusting to a child’s T1D added challenges beyond normative developmental issues for young children (Monaghan et al., 2022), which had implications for school/daycare enrollment and T1D management in those settings. For example, parents’ concerns related to unpredictable food preferences are typical at this age and can make T1D management challenging (Mackey et al., 2020). Parents’ concern for lack of staff training and desire for frequent communication with personnel who are responsible for their child’s welfare during the day aligned with Commissariat et al.’s (2020) qualitative themes about perceived burden of vigilance with secondary caregivers (including school/daycare personnel) among parents of young children with T1D. Teachers have previously reported feeling uncertain about how to recognize and manage T1D emergencies at school (Amillategui et al., 2009), paralleling these concerns. Each of these concerns influenced parents’ comfort sending their newly diagnosed young child to school/daycare or the child’s ability to safely be in a school setting. Our theme reflecting cooperation between parents and schools coupled with the quantitative finding that most parents rated their child’s teacher to be receptive to learning about T1D care suggests this collaborative approach can be protective, potentially facilitating positive school/daycare experiences and making parents more comfortable sending their young children to school/daycare soon after diagnosis. Indeed, school nurses have indicated they also believe arranged meetings with parents to discuss T1D management can benefit children with T1D in school settings (Williams et al., 2019).

Socioeconomic resources were another important factor in parent experiences with school/daycare. Diabetes-related costs can lead to financial strain for parents (Eshtehardi et al., 2021), which our mixed-methods findings suggested may limit access to early childhood education or childcare options. While systemic inequities were not the main focus of this study, parents reported unequal access to and resources within schools/daycares. This suggests possible systemic disparities in access to early education or childcare for families of young children with T1D, similar to the general population (Kagan, 2009). Indeed, families of young children with T1D from under-resourced backgrounds may lack access to educational choices and face barriers in advocating for their child’s rights to appropriate medical care in the school system (Morone et al., 2021). Adverse social determinants of health (e.g., food insecurity, unstable housing) have also been linked to outcomes such as lower health-related quality of life and out-of-range glycemic levels among youth with T1D, highlighting the pervasive impact of the macrosystem on children with T1D (Hershey et al., 2021). In the current study, only subjective SES was linked with school/daycare enrollment, but not other measures of SES. Given limited and mixed evidence regarding the association between SES and pediatric T1D outcomes (Butler et al., 2020), more research about financial aspects of access to education is needed.

A relatively small, though nonnegligible proportion of our sample endorsed being rejected or asked to leave schools/daycares due to T1D (15%). This finding suggests parents may need support for responding to discrimination, and screening for school/daycare experience should be prioritized during the initial 1.5 years post-diagnosis. The impact of discrimination was evident across multiple levels within our socio-ecological model, including schools/daycares having inadequate resources for optimal T1D management or rejecting a child’s enrollment because they lacked the staffing or infrastructure to appropriately care for T1D at all. Without universal daycare, reliable, high-quality early education and childcare options are already limited in the United States (Jessen-Howard et al., 2020), and our findings demonstrate that families adjusting to having a young child with newly diagnosed T1D may face even greater challenges with access to childcare, despite federal nondiscrimination laws. Additionally, while not a focus of this specific study, it is likely that access to appropriate T1D management in educational settings intersects with systemic racism and other structural inequities to further contribute to health disparities, which should be explored in future studies (Butler et al., 2020).

Although post hoc analyses did not support associations between use of technology for T1D management (insulin pumps, CGMs) and endorsement of school-related concerns, this may reflect that for some families, technology facilitated positive school experiences, while for others, it was a hindrance. For example, parents have noted benefits of CGMs for young children, including an increased sense of security and decreased worry about out-of-range blood sugars when away from their children, as well as disadvantages, such as disruptive alarms or data overload (Hilliard et al., 2019). While insulin pumps can provide increased convenience and flexibility away from home, school nurses and staff may struggle with lack of knowledge and experience with newer devices (Hirose et al., 2012). Experiences with devices at school may be different as families adjust to a new T1D diagnosis and early education settings, as well.

Our study had several strengths, including the use of multiple time points across a clinically and developmentally important period, a racially, ethnically, socioeconomically, and geographically diverse sample, and rigorous qualitative, quantitative, and mixed methods analyses. There are also limitations. These were secondary analyses of data from a trial that did not specifically focus on school/daycare experiences. Therefore, only minimal data on schools/daycares were collected at baseline, and no data were collected from school personnel. The qualitative data were collected via three open-text survey questions rather than an interview, so there were no follow-up probes that could have elicited richer responses and potentially resulted in different qualitative themes. Analyses did not explore potential differences in responses based on length of time post-diagnosis, which precluded drawing conclusions about changes in school/daycare experiences over time. The post hoc analyses integrating the qualitative and quantitative data added rigor to the mixed methods design, yet were exploratory and limited by available data. These analyses generated future research directions, including more in-depth assessments of other themes generated from the qualitative analyses (e.g., parental worry/emotional distress, child communication skills/eating behaviors, and interactions between parent functioning and school staff).

Our analyses suggest that efforts may need to occur across multiple levels of the social-ecological framework to meet the needs of families of young children with T1D in the school and daycare settings. At the individual child level, developmentally specific strategies may be useful to introduce classmates and school personnel to information about diabetes, such as including age-appropriate books about youth with T1D in school libraries or inviting parents to share information about diabetes with their children’s classrooms or school staff. Helping children learn to talk to others about their diabetes and ask for assistance when needed may also be helpful. At the parent level, research suggests that parental distress, coping, and social support can impact T1D outcomes for young children (Pierce et al., 2017). To support parents’ emotional functioning, diabetes care teams can monitor parent psychosocial functioning and provide appropriate recommendations for support (e.g., connecting parents with support groups and peer mentors, recommending mental health providers with experience working with families of youth with health conditions).

Within the school/daycare context, school systems can support parents and families by implementing policies that provide personnel time to obtain diabetes-related education to promote knowledge, skills, and comfort assisting students with T1D. For instance, diabetes educators at pediatric endocrinology clinics often provide training to school personnel, and the American Diabetes Association (ADA) Safe at School website provides online educational modules for school staff to learn more about diabetes management (American Diabetes Association, 2022). Research exploring the perspectives of teachers and school nurses suggest they too are interested in receiving formal education about T1D to improve their knowledge about routine and emergency T1D care at school (Amillategui et al., 2009; Williams et al., 2019).

At the level of cooperation between parents and the school/daycare environment, most parents felt school personnel were receptive to the instructions they provided about T1D care at school, highlighting the importance of promoting open communication and information-sharing between families and schools. School systems and daycares can support this by working with families to establish an individualized diabetes care plan early in each school year, which may help to align expectations, facilitate a coordinated approach to T1D management, and encourage collaborative communication between personnel and the family. The healthcare system may also be a resource to provide support for these changes. Multidisciplinary healthcare team members, including psychologists, social workers, and diabetes educators, are equipped to help parents address various challenges across systems (e.g., staff receptivity to T1D management, school/daycare infrastructure, family finances) that they face when making school/daycare decisions for their young child with T1D (Kichler et al., 2015; Powell et al., 2015). In particular, as some parents reported school/daycare discrimination, healthcare professionals should routinely provide families with educational resources that inform them of their rights regarding their young child’s access to appropriate T1D management at school/daycare, as well as information about educational advocacy groups (e.g., ADA Safe at School Program).

At the macrosystem level, healthcare professionals, advocacy groups, and professional organizations, such as the ADA or American Academy of Pediatrics, are well positioned to advocate for policies that ensure young children with T1D have access to a safe environment and full participation at school/daycare, starting as soon as diagnosis (Lawrence et al., 2015). For example, schools may benefit from partnerships with advocacy groups to better understand the laws protecting children with T1D in the educational system and to help them advocate for additional resources to meet their needs. During times of socio-historical disruption, such as the COVID-19 pandemic, there may be additional demands and challenges children, families, schools/daycares, and healthcare systems face that require extra attention, resources, and support to address children’s health and educational well-being. From a research standpoint, implementing community-based participatory research strategies may be an important future direction to help generate novel solutions to support youth with diabetes in school/daycare that meet the needs of multiple stakeholders (Nelson et al., 2009). Gathering data from school/daycare personnel would be a particularly important addition to more fully understand their considerations related to caring for students with T1D in educational systems.

Supplementary Data

Supplementary data can be found at: https://academic.oup.com/jpepsy.

Author Contributions

Alexa Stern (Conceptualization [equal], Formal analysis [lead], Methodology [equal], Visualization [lead], Writing—original draft [lead], Writing—review & editing [equal]), Brenda Duran (Data curation [equal], Formal analysis [supporting], Writing—review & editing [supporting]), Randi Streisand (Formal analysis [supporting], Funding acquisition [lead], Investigation [lead], Methodology [lead], Resources [equal], Supervision [equal], Writing—review & editing [supporting]), Christine H. Wang (Data curation [equal], Formal analysis [supporting], Writing—review & editing [supporting]), Carrie Tully (Formal analysis [supporting], Investigation [supporting], Writing—review & editing [supporting]), Lauren Clary (Formal analysis [supporting], Writing—review & editing [supporting]), Katherine Gallagher (Formal analysis [supporting], Writing—review & editing [supporting]), Fran Cogen (Formal analysis [supporting], Resources [supporting], Writing—review & editing [supporting]), Lefkothea Karaviti (Formal analysis [supporting], Resources [supporting], Writing—review & editing [supporting]), Maureen Monaghan (Formal analysis [supporting], Funding acquisition [supporting], Investigation [supporting], Writing—review & editing [supporting]), and Marisa Hilliard (Conceptualization [equal], Data curation [equal], Formal analysis [equal], Funding acquisition [supporting], Investigation [equal], Methodology [equal], Resources [equal], Software [lead], Supervision [equal], Visualization [equal], Writing—original draft [supporting], Writing—review & editing [supporting])

Funding

This research was supported by grant 1R01DK102561 from the National Institute of Diabetes and Digestive and Kidney Diseases, PI: Streisand. MH also received support from 1K12 DK097696, PI: Anderson.

Conflicts of interest: None declared.