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. Author manuscript; available in PMC: 2026 Feb 25.
Published in final edited form as: J Clin Nurs. 2014 Jul 22;24(9-10):1199–1209. doi: 10.1111/jocn.12658

Relations among school/daycare functioning, fear of hypoglycaemia and quality of life in parents of young children with type 1 diabetes

Linda J Herbert 1, Lauren Clary 1, Victoria Owen 1, Maureen Monaghan 1, Vanessa Alvarez 1, Randi Streisand 1
PMCID: PMC12930452  NIHMSID: NIHMS2141555  PMID: 25047499

Abstract

Aims and objectives.

To investigate the type 1 diabetes-related school/daycare experiences of parents of young children and to examine the relationship among child school/daycare functioning, parent fear of hypoglycaemia and parent type 1 diabetes-related quality of life.

Background.

Parents of young children who attend school/daycare must rely on others for daily type 1 diabetes management. Worry about school/daycare type 1 diabetes management may cause parental distress and contribute to diminished parent quality of life. Parental concerns about type 1 diabetes management in young children in the school/daycare setting have not been well described in the literature.

Design.

Descriptive correlational and cross-sectional parent report of questionnaires design.

Methods.

As part of a randomised controlled trial for parents of young children with type 1 diabetes, 134 parents completed self-report measures at baseline. Data included demographic, school/daycare, and medical information, parent reports of child school/daycare functioning, parent fear of hypoglycaemia and parent type 1 diabetes-related quality of life.

Results.

Parents of younger children, children on a more intensive medical regimen and children who had experienced type 1 diabetes-related unconsciousness or seizures had more school/daycare concerns. Parents who perceived their children had higher school/daycare functioning had less fear about hypoglycaemia and reported better type 1 diabetes-related quality of life. School/daycare functioning and fear of hypoglycaemia were significantly associated with parent type 1 diabetes-related quality of life.

Conclusions.

Parents’ concerns about school/daycare functioning and fear of hypoglycaemia play an important role in parents’ type 1 diabetes-related quality of life.

Relevance to clinical practice.

Members of the healthcare team should be aware of concerns related to children attending school/daycare and provide additional support as warranted.

Keywords: diabetes management, hypoglycaemia, quality of life, type 1 diabetes, young children

Introduction

Type 1 diabetes (T1D) is a costly chronic illness that requires immediate care after diagnosis and a lifetime of medical treatment (Vehik et al. 2007). In the USA, T1D is one of the most prevalent chronic illnesses diagnosed in childhood and occurs in 1 of every 400–600 American children (SEARCH for Diabetes in Youth Study Group 2007). Furthermore, the incidence of T1D is rapidly increasing in young children under the age of 5 (Vehik et al. 2007, Patterson et al. 2009). Due to the complexity of care associated with T1D, including frequent blood glucose (BG) monitoring, insulin administration and meal planning, the responsibilities of daily management for young children with T1D are predominantly addressed by parents. The normal stages of growth and development (physical, cognitive, socioemotional) that occur during young childhood often make daily management of T1D even more difficult: young children are more sensitive to insulin, exhibit fluctuating daily carbohydrate intake and physical activity and lack many of the cognitive skills necessary to understand T1D and the communication skills necessary to identify symptoms of hypoglycaemia and hyperglycaemia (Golden et al. 1985, Kushion et al. 1991, Silverstein et al. 2005).

Parents have identified episodes of hypoglycaemia as one of their primary stressors when caring for young children with T1D, as acute complications can include unconsciousness and seizures (Bade-White & Obrzut 2009). Episodes of hypoglycaemia can often leave parents feeling fearful, anxious and frustrated by the responsibility of preventing such episodes (Hatton et al. 1995, Bade-White & Obrzut 2009). Thus, parents of young children with T1D may be more likely to experience diminished quality of life (QOL) and psychosocial concerns such as anxiety and depression (Barnard et al. 2010).

One particular area of concern may be school/daycare. The American Diabetes Association (ADA) recommends that children with T1D achieve the same level of disease management in school/daycare as they do outside of this environment (American Diabetes Association 2012). The goal is for children to be fully integrated into school/daycare activities and learning opportunities while remaining medically safe. However, the transfer of care that occurs when children attend school/daycare may prompt additional parental concerns regarding T1D management and hypoglycaemia and hyperglycaemia treatment.

Background

There is a dearth of literature regarding school/daycare experiences among young children with T1D (i.e. aged six and below) and their families. However, research investigating parental perspectives of T1D support at school among older children has demonstrated that parents often perceive that there is inadequate support in place in school settings (Jacquez et al. 2008). In a study by Jacquez et al. (2008) among parents of older children, many parents reported worry about hypoglycaemia and hyperglycaemia as well as concerns that their child did not have a written care plan in place at school, access to a regular nurse, and/or the ability to check BG levels or administer insulin in class. Parents were also largely unaware of federal laws in the USA that provide protections for children with chronic illness; for example, Section 504 of the Rehabilitation Act of 1973 mandates that children with a disability cannot be excluded from participating in federally funded programmes (American Diabetes Association 2012) and requires schools to provide accommodations and services to enable children with T1D to receive the same access to educational opportunities as other children while also remaining medically safe at school. Other research regarding the school experiences of older children have noted that many school personnel are not educated about T1D management needs and do not allow consistent access to glucometers, restrooms and water (Nabors et al. 2003).

School personnel also report that it is difficult to provide adequate support for children with T1D. An Ohio survey regarding elementary, middle and high school nurses’ perceptions of adherence to ADA guidelines indicated that only 69% reported the presence of school personnel trained in insulin administration, 20% in ketone testing and 49% in the calculation of nutrition information for school lunches (MacLeish et al. 2013). Furthermore, some schools have limited nursing staff, and therefore, a nurse may be available only for part of the day or certain days of the week. This complicates T1D care when schools only allow nurses to provide health care (Brener et al. 2001). For example, in a recent court case in Washington, DC, a mother was informed by her child’s elementary school administration that only school nurses could complete T1D care; thus, on days when a nurse was not available, the mother could either provide all of her child’s T1D care herself or keep her child at home (Turque 2012). As a result of this case, Washington, DC implemented a re-education programme for all school nurses and identified additional adults in each school to receive training in T1D management. Although this was the preferred outcome in this situation, this policy only applied to children who were elementary school age and older. Thus, there likely remain similar problems for young children who require competent adult supervision and monitoring throughout each day. It is likely that some parents of young children must be present at school/daycare to provide assistance to their child or find alternative options.

Parents and school/daycare personnel must consider many aspects of T1D care, not just general T1D management, when preparing for school/daycare. These other areas may include helping young children explain T1D to peers, creating a communication plan between parents and school/daycare personnel, facilitating participation in field trips, extracurricular and physical activities, ensuring healthy foods are available and assisting with accurate carbohydrate counting. Furthermore, older children express specific worry regarding recognising and treating a low BG level at school (Amillategui et al. 2007, 2009). Alarmingly, many school/daycare personnel have not been specially trained to adequately recognise and manage emergent situations and hypoglycaemic episodes. In a study conducted by Pinelli et al. (2011), most parents (56%) stated that their child’s school had no refrigerator to store glucagon (needed for immediate treatment of an extreme low BG level) or that they were unsure whether the school was equipped to store glucagon. A minority of teachers had received specific training in glucagon administration (40%), and even fewer teachers (15%) said they would use glucagon directly in an emergency (Pinelli et al. 2011).

Much of the research regarding T1D management in school settings has been conducted with older children (age six and above) and adolescents. Often those children and adolescents are responsible for parts of their T1D routine in the school setting, but still require assistance and support at school. However, younger children have fewer T1D responsibilities than older children with T1D; there is little information regarding school and daycare experiences of young children, their school/daycare functioning and the relation that demographic and medical characteristics, such as age and insulin regimen, may have with school/daycare T1D experiences. The requirements of intensive insulin regimens, such as multiple daily injections and insulin pump therapy, may pose unique challenges to school/daycare T1D management. It is also likely that the added difficulty of managing T1D in young children in the school/daycare setting directly contributes to parents’ QOL. However, to our knowledge, these are not areas that have been addressed in the T1D literature.

The present study’s goals are to provide a preliminary examination of T1D-related school/daycare experiences and parent QOL in an understudied population of young children (aged six years and below) and to identify potentially modifiable variables associated with QOL. The specific aims for the present study were (1) to investigate parents’ T1D-related experiences and impressions of school/daycare, (2) to examine the demographic/medical characteristics related to their experiences/impressions, (3) to assess child school/daycare functioning and parent functioning and (4) to examine the relationships among child school/daycare functioning, parental fear of hypoglycaemia and parental reports of their T1D-related QOL. It was hypothesised that parents of younger children would report more school/daycare concerns and that parents who experienced increased fear of hypoglycaemia and whose children experienced worse school/daycare functioning would report poorer T1D-related QOL.

Methods

Participants

One hundred and thirty-four parents recruited from three tertiary care endocrinology clinics agreed to participate, gave verbal consent over the phone and completed baseline questionnaires. Eligibility criteria included being the self-identified parent of a child between the ages of one and six years who had been diagnosed with T1D for at least six months. Parents who lacked English fluency or whose children had been previously diagnosed with an additional chronic illness or a developmental disorder were excluded from participation. In total, 285 recruitment letters were mailed and 219 parents were successfully contacted by phone. Of these, 203 patients were eligible. Eighty-two per cent of parents (n = 167) who were contacted and eligible provided verbal consent to participate. Of those 167 parents, 80% (n = 134) completed baseline assessment.

Procedure

This study was approved by each site’s Institutional Review Board. Parents who met initial eligibility criteria were mailed a detailed letter explaining the purpose and procedure of the study. Approximately two weeks after the letter was mailed, families were called by a research team member to discuss their interest, describe the study in further detail, complete eligibility criteria and schedule a baseline phone call if the parent verbally agreed to participate. Questionnaires were completed over the phone within two weeks of verbal consent. Written consent was obtained at the next scheduled clinic appointment and the child’s medical chart was reviewed. Participants were compensated for their time with gift cards.

Measures

Demographic and school/daycare questionnaire

Parents completed a 30-item questionnaire to provide general demographic information, including questions regarding parent and child age, gender, race, ethnicity, family income level, parent education level and parent employment. School information, such as whether or not the child was enrolled in a school/daycare, whether or not the child had ever been turned down for enrolment due to their T1D diagnosis and whether or not the child had a Diabetes Medical Management Plan or 504 Plan (i.e. a legal document that states what T1D-related aids and services the school must provide the child) in place was collected. Parents provided their impressions of the T1D care provided in their child’s school/daycare setting, school/daycare concerns, and their interest in T1D-related school/daycare resources.

Medical questionnaire

Children’s T1D diagnosis duration, current insulin regimen, history of T1D acute complications such as seizures, periods of unconsciousness and hospitalisations were collected by parent report on a 12-item medical questionnaire developed by the research team.

Medical chart review

Children’s medical charts were examined for their history of T1D-related hospitalisations and acute complications, such as T1D-related seizures and loss of consciousness. Medical charts were also examined for haemoglobin A1c, a measure of glycemic control; higher amounts of glycosylated haemoglobin indicate poorer glycemic control. The ADA recommends that children aged six and below maintain a haemoglobin A1c of 69 mmol/mol or less (American Diabetes Association 2013).

Hypoglycaemia Fear Survey – Parents of Young Children (HFS-P-YC)

The Hypoglycaemia Fear Survey – Parents of Young Children (Patton et al. 2007) is a 27-item measure that assesses parental fear about their young child experiencing a low BG level. The measure has two scales, a 16-item scale pertaining to worries about hypoglycaemia and an 11-item scale assessing behaviours in which the parent engages to avoid hypoglycaemia. Parents rate items on a five-point Likert scale. Scores are summed across each subscale with higher scores indicating greater worries and behaviour related to hypoglycaemia fear. Patton et al. (2007) reported acceptable internal consistency scores for the worry (α = 0·62), behaviour (α = 0·89) and total (α = 0·86) scores and test–retest reliability has been strong, ranging from 0·73–0·91.

Pediatric Quality of Life Inventory (PedsQL General Form)

The Pediatric Quality of Life Inventory (Varni et al. 1999) is a 21-item measure used to acquire parental report of their child’s QOL in the past month. The measure is divided into four subscales: physical, emotional, social and school functioning. For the current study’s purposes, only data from the school functioning subscale were used. Of note, there are toddler-specific questions in the school functioning subscale. Parents rate items on a five-point Likert scale. Items are reverse scored and summed; higher scores indicate fewer problems. The PedsQL General Form has been demonstrated to be reliable and valid (α = 0·86–0·90) (Varni et al. 2001).

Parent Diabetes Quality of Life Questionnaire (PDQOL)

The Parent Diabetes Quality of Life Questionnaire (Vandagriff et al. 1992) is a questionnaire used to assess parents’ report of their satisfaction with their child’s T1D, the impact of T1D on their lifestyle and worries related to their child’s illness. The measure is divided into subscales (satisfaction, 16 items; impact, 12 items; worry, 14 items; total, 42 items) that are calculated individually and into a total QOL score (possible range 28–196). Each subscale is administered on a five-point Likert scale. The measure was reported by Vandagriff et al. (1992) to be both reliable and valid (α = 0·64–0·89).

Data analysis

All statistical analyses were conducted using SPSS (20th edition). Descriptive statistics were generated to assess parent/child demographic and medical characteristics, school/daycare characteristics and parents’ impressions of their child’s school/daycare experiences. Subsequently, correlational and chi-square analyses were conducted to determine whether child and parent demographic and medical characteristics were related to school/daycare characteristics and parent concerns. Next, children’s school/daycare functioning on the PedsQL and parents’ psychosocial functioning on the HFS-P-YC and PDQOL were assessed, and correlational analyses among these variables were conducted. Finally, a linear regression, controlling for child age, was conducted, with parent T1D-related QOL on the PDQOL regressed on child school/daycare functioning on the PedsQL and hypoglycaemia worry and avoidance behaviour on the HFS-P-YC.

Results

Participant information

Participating parents were predominantly female (90%), Caucasian (78%), married (84%), with a mean age of 36·80 years (SD = 5·93, Range = 22·20–60·10). Most parents (76%) reported an average household income of $50,000 or more. Mean child age was 5·33 years (SD = 1·34), and 49% were female. Average haemoglobin A1c was 65·4 mmol/mol (SD = 9); average length of T1D diagnosis was 2·00 years (SD = 1·24, Range = 0·54–5·95). Seventy-two per cent of children were on an intensive insulin regimen (basal/bolus or insulin pump).

Demographic medical information

Most parents reported that they were responsible for performing BG checks (57%), but some parents reported that they shared BG check responsibility with their child (29%) or that their child performed most BG checks (14%). Twelve per cent of parents reported that their child had experienced a seizure or period of unconsciousness related to hypoglycaemia, and 12% reported that their child had experienced at least one T1D-related hospitalisation other than at the time of diagnosis. In contrast, 8% of children had at least one T1D-related seizure or period of unconsciousness and 8% of children had at least one T1D-related hospitalisation other than at the time of diagnosis documented in their medical chart. Parent report and medical chart documentation were highly correlated, r(133) = 0·40, p < 0·001, r(132) = 0·31, p < 0·001, respectively; however, parent report and medical chart records did not always match. (See Aim 2 results for more information).

Aim 1: Child school/daycare characteristics

Most children (86%) were enrolled in school/daycare, and of these children, most attended a full-day programme (77%) five days a week (82%). Fifty-six per cent of children were enrolled in school/daycare prior to T1D diagnosis. Thirty-six per cent of parents reported that there was at least one additional child with T1D at their school/daycare. Although 98% of parents believed that it is important for young children with T1D to have the opportunity to attend school/daycare, 44% indicated their child’s diagnosis affected their enrolment decision, 16% had been turned down for enrolment as a result of their diagnosis, and 12% had been removed from a school/daycare programme by a parent due to T1D management difficulties.

Seventy-one per cent of parents were employed either full time (45%) or part time (26%). Sixty per cent of all parents said that T1D affected their decision to work outside the home. Parents changed their work hours to be more flexible, switched jobs to be closer to their child’s school/daycare and worked part time or stopped working altogether. Thirty-three per cent of parents went to their child’s school/daycare at least once a week to assist with T1D care; parents who were employed full time or part time were not less likely than parents who were not employed to go to their child’s school/daycare to assist with T1D care (p > 0·05). The majority of parents (89%) said it was ‘moderately to extremely important’ that their child’s teacher/daycare provider be able to manage T1D, yet only 57% were ‘moderately to extremely confident’ that staff could manage T1D independently, and 28% thought it was ‘moderately to extremely difficult’ to instruct their child’s teacher/daycare provider in T1D care.

The majority of parents whose children were in school/daycare (74%) indicated they had a T1D medical management plan for school/daycare. A minority of children attending school/daycare (21%) had a documented 504 Plan for T1D management. Parents reported that a variety of resources would be helpful in developing a T1D medical management plan; T1D team members’ assistance, another parent of a child with T1D’s assistance, sample medical management plans and step-by-step guides were ranked as being the most helpful resources. When asked about frequent T1D-related school/daycare concerns, parents reported a variety of concerns (see Fig. 1). Concerns with initial training and retraining of teachers/staff to appropriately manage T1D, administering/adjusting insulin, responding to extreme (high or low) BG episodes and supervising snacks/meals were the most frequently endorsed problems.

Figure 1.

Figure 1

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Percentage of parents who endorsed T1D-related school/daycare concerns.

Aim 2: Medical/demographic characteristics related to school/daycare

A series of correlational and chi-square analyses were conducted to assess how specific demographic and medical variables were related to parents’ perceptions of school/daycare concerns; Table 1 presents significant correlations. Of note, parents of younger children were more likely to say that T1D affected their school/daycare enrolment decision and had less confidence that their child’s teacher/daycare provider could be fully capable of caring for their child with T1D, ps < 0·05. Parents of younger children were also more likely to have a diabetes medical management plan for their child, p < 0·05. Parents of non-Caucasian children believed that it was more important for their child’s teacher/daycare provider to be able to care for their child’s T1D and had more confidence in his/her ability to care for T1D, ps < 0·05.

Table 1.

Correlations among demographic/medical variables and parents’ school/daycare experiences

Child Age Child
Ethnicity		 Parent
Employment		 Regimen Acute
Complications
(Parent Report)		 T1D-related
Hospitalisations
(Medical Chart)
Does your child attend school/daycare? 0·53*** N/A N/A N/A 0·03 −0·03
How many days per week do you or another caregiver go to your child’s school/daycare to assist with T1D management? 0·02 −0·01 −0·04 −0·10 0·22* 0·03
Did T1D affect your decision to enrol your child in school/daycare? −0·18* N/A N/A N/A 0·12 0·19*
Do you have a ‘Diabetes Medical Management Plan’ in place for your child at school/daycare? −0·28** N/A N/A N/A 0·05 0·05
How confident are you that a school or daycare facility could be fully capable of caring for a child with T1D when a parent is not present? 0·27** 0·24** 0·18* −0·23** 0·08 0·07
How important is it to you that your child’s teacher or daycare provider be fully capable of caring for your child with T1D when you are not present? −0·02 0·18* 0·04 −0·14 −0·02 0·02
How difficult was it for you to instruct your child’s teacher/daycare provider to fully care for your child with T1D? −0·07 0·09 0·04 0·13 −0·03 0·09
PedsQL – School functioning −0·33** 0·06 0·02 −0·01 −0·11 −0·18*
HFS-P-YC – Behaviour −0·21* −0·01 −0·09 −0·01 0·02 0·05
PDQOL – Impact total −0·18* −0·02 −0·11 0·22* 0·09 0·14
PDQOL – Satisfaction total 0·02 −0·09 0·07 0·29** 0·12 0·05
PDQOL – Worry total 0·01 0·04 −0·19* 0·05 0·01 0·03
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0 = No, 1 = Yes; Ethnicity: 0 = Caucasian, 1 = Non-Caucasian; Parent Employment: 0 = Not Employed, 1 = Employed; Regimen: 0 = Conventional, 1 = Intensive; PDQOL, Parent Diabetes Quality of Life Questionnaire; T1D, type 1 diabetes; PedsQL, Pediatric Quality of Life Inventory; HFS-P-YC, Hypoglycaemia Fear Survey-Parents of Young Children.

Confidence, importance and difficulty were rated on a five-point Likert scale; higher scores indicated more confidence, importance and difficulty.

*

p < 0005

**

p < 0001

***

p < 00001.

With respect to medical characteristics, parents of children who were on a conventional insulin regimen reported that their child’s diagnosis had less impact on their school/daycare enrolment decision than parents of children who were on an intensive insulin regimen, χ2(n = 133) = 6·24, p = 0·01. These parents also expressed more confidence that their child’s school/daycare facility could fully care for their child, p < 0·01. Finally, there were varying results regarding T1D-related hospitalisations, seizures and unconsciousness depending on the source of medical information. Parents who reported that their child had experienced T1D-related unconsciousness or seizures went to their child’s school/daycare more frequently to assist with T1D care, p < 0·05; however, this relationship was not found when examining acute complications documented in medical charts. Furthermore, parents were more likely to say that T1D affected their decision to work outside the home if their child’s medical chart documented T1D-related hospitalisations, p < 0·05, yet this relationship was not significant when using parent report.

Aim 3: Child/parent functioning

Correlational analyses were conducted to determine the relationship of key demographic/medical variables with children’s school/daycare functioning and parents’ hypoglycaemia fear and T1D-related QOL. See Table 1 for significant correlations. Parents of older children reported poorer school/daycare functioning on the PedsQL, p < 0·01; however, parents of younger children engaged in more hypoglycaemia avoidance behaviours and perceived a greater impact of T1D on their daily lives ps < 0·05. Parents of children on an intensive insulin regimen (multiple daily injections or insulin pump therapy) reported that T1D had a greater impact on their daily life and less satisfaction with their child’s T1D care, ps < 0·05. Finally, parents reported poorer school/daycare functioning among children whose medical charts documented a history of T1D-related hospitalisations, p < 0·05.

With respect to correlations among variables, school/daycare functioning scores on the PedsQL were significantly negatively correlated with parents’ worry related to hypoglycaemia on the HFS-P-YC, r(113) = −0·30, p < 0·01, and parents’ T1D-related QOL on the PDQOL, r(113) = −0·43, p < 0·001, indicating that parents who perceived their children had higher school/daycare functioning had less hypoglycaemia fear and better T1D-related QOL. Similarly, hypoglycaemia worry and avoidance behaviour were significantly positively correlated with parents’ T1D-related QOL, r(113) = 0·49, p < 0·001, r(113) = 0·33, p < 0·001, respectively. Parents who experienced more hypoglycaemia fear reported poorer T1D-related QOL.

Aim 4: Relationship among school/daycare functioning, fear of hypoglycaemia and parents’ diabetes-related QOL

A linear regression, controlling for child age, was conducted to test the hypothesis that child school/daycare functioning, hypoglycaemia worry and hypoglycaemia avoidance behaviour would predict parent T1D-related QOL. Results indicated that child school/daycare functioning and hypoglycaemia worry were significantly associated with parent T1D-related QOL, β = ·0·36, p < 0·001, β = 0·33, p < 0·001, yet hypoglycaemia avoidance behaviour was not, p > 0·05. The overall model was significant as well, F(4,108) = 15·51, p < 0·001, R2 change = 0·36, p < 0·001. Parents of children with worse school/daycare functioning and who experienced greater hypoglycaemia worry also experienced poorer T1D-related QOL.

Discussion

T1D management for children and parents is stressful, and data from this study suggest that school/daycare presents distinct stressors regarding T1D care. Only half of the parents in this sample were confident that school/daycare staff could manage their child’s T1D, and less than a quarter of parents believed a teacher or daycare provider were fully capable of independently caring for their child’s T1D needs. Some parents reported that their child was denied school/daycare enrolment due to their child’s diagnosis; others chose not to enrol their child in school/daycare at all. The extant research regarding school/daycare experiences among young children with T1D is limited, but consistent with the data from this study, parents name access to daycare centres as one of their primary concerns (Sullivan-Bolyai et al. 2002), worry about hypoglycaemia in the school setting (Amillategui et al. 2009), express low confidence in schools’ T1D management skills and do not always take advantage of medical management plans (Jacquez et al. 2008). Children are occasionally turned down for school/daycare enrolment as a result of their diagnosis (Amillategui et al. 2007). Collectively, these studies indicate that school/daycare is an area of primary concern for parents of young children with T1D.

These data suggest that there may be specific child and medical characteristics that are related to parents’ school/daycare experiences, a finding which has not been noted in other research regarding children with T1D. Younger child age, use of an intensive insulin regimen (i.e. multiple daily injections or insulin pump therapy), a history of T1D-related unconsciousness, seizures, and/or hospitalisations, and greater parental fear of hypoglycaemia were all associated with greater school/daycare concerns. Parents of younger children may elect to delay school/daycare enrolment as a result of the additional demands of preparing a school/daycare for T1D care. These parents may experience greater concerns regarding their child’s ability to independently complete T1D tasks and communicate symptoms of hypo- or hyperglycaemia, especially if the child is enrolled in daycare. In the USA, daycares are not subject to the federal regulations regarding medical care to which federally funded schools must adhere and/or may not have a staff member on site who can manage T1D. Parents of children on an intensive regimen may be concerned that the additional T1D management skills required of school nurses and/or staff (i.e. insulin dose calculation, insulin administration) may make T1D school/daycare management too complex for a nonprimary caregiver. Furthermore, parents of children who have experienced hypoglycaemia-related acute complications or hospitalisations or who express greater hypoglycaemia fear may desire more personal attention for their child than can be provided by the school/daycare. Although these data are only preliminary and require replication, they provide unique insight regarding which parents may have the most difficulty with school/daycare T1D management and may benefit from clinical intervention.

Parents of older children in this sample perceived their child had greater school functioning problems than parents of younger children, which is congruent with the published T1D PedsQL School Functioning norms (ages 2–18), demonstrating greater school concerns with increased child age (Varni et al. 2003). Parents also reported diminished T1D-related QOL, which is consistent with the literature (Goldbeck 2006, Jaser et al. 2009). Worse parent QOL was associated with younger child age and an intensive insulin regimen, and there was a strong association of child school/daycare functioning and hypoglycaemia fear with parent QOL. These data provide a unique contribution to the literature: parents’ T1D-related QOL is directly related to their perceptions of child school/daycare functioning and hypoglycaemia fear and suggest that school/daycare functioning and hypoglycaemia fear should be primary areas of intervention.

Limitations and future directions

Although the current study adds important information to the existing literature on T1D management in school/daycare settings, a few limitations warrant discussion. First, participants were predominantly Caucasian, married, middle- to upper-class mothers, which limits the generalisability of the findings to a subgroup of parents. That being said, the sample’s general ethnic homogeneity is representative of the hospitals’ T1D clinic populations and reflects the higher incidence of T1D among Caucasians (SEARCH for Diabetes in Youth Study Group et al. 2006). However, it is notable that parents of non-Caucasian children in our sample reported more positive school/daycare perceptions than Jacquez et al. (2008)’s findings that racial minority children were less likely to have a T1D medical management plan at school. Fathers and other caregivers may have also differed in their perceptions of school/daycare experiences. It is possible that fathers and other caregivers are concerned about different aspects of T1D care in school/daycare than mothers or have different priorities, such as participation in physical activity. If they have different interactions with school/daycare staff, they may have different opinions than mothers about the knowledge and competence of school/daycare staff to manage their child’s T1D as well. Future research should consider inclusion of fathers/other caregivers, ethnic minorities, single-parent households and households with lower socioeconomic status to provide a broader understanding of the school/daycare experiences of young children with T1D and to increase generalisability.

Another primary limitation is that the results regarding the associations among demographic/medical characteristics and school/daycare difficulties are preliminary and require replication. Our sample was large, but these findings can only provide a guide for future research. It is likely that research in this area would benefit from the development of a measure that assesses specific T1D-school/daycare-related experiences, including their relation with various T1D regimens. Furthermore, although the medical data included in this study were collected by both parents and medical chart review, the patterns of findings varied. Each method of data collection provides unique insight into children’s medical histories, and the impact of a parent’s perception of the child’s illness history should not be understated. However, these methods also have disadvantages: parents may not remember all aspects of their child’s medical history and medical charts are only snapshots of medical history and dependent on parents’ reporting all medical events to the T1D team, as well as medical personnel documenting all complications. Further assessment of these findings is warranted.

In addition, school/daycare data were based on parent self-report, which could inflate correlations among the variables due to single-rater bias, and, although the measures administered in this study are psychometrically sound, self-report measures are vulnerable to participant bias. Data collection from multiple informants, including school personnel, would further validate the findings of this study. More specifically, additional research measuring responses from school teachers and nurses may advance our understanding of what resources are necessary to improve training and parent–teacher communication about T1D, thus improving parent T1D-related QOL and reducing hypoglycaemia fear, but also ensuring that children achieve the glycemic control standards recommended by the ADA. Data collection via observational methods may also be warranted, as they could document the day-to-day school/daycare experiences of young children with T1D and identify additional areas for intervention. Finally, this study relied on cross-sectional, baseline data from a longitudinal randomised controlled trial; therefore, causal conclusions cannot be determined. It is possible that the direction of the studied relationships could be reversed or bidirectional. Longitudinal assessment of the school/daycare experiences of children with T1D is warranted to address these issues.

Conclusion

The current study is among the first to examine T1D-related school/daycare experiences and parent QOL in a sample of young children and their parents. Our findings support the existing literature and, in conjunction with the rising prevalence rate of T1D among young children, further document the need for comprehensive research about school/daycare experiences among this age group. Children with T1D should have the opportunity to attend school/daycare while also remaining medically safe, and parents should feel comfortable leaving their children at school/daycare without concern or fear that their child’s health is at risk. Furthermore, schools should feel competent to enrol and care for children with T1D. The development of clinic- and school-based interventions targeting school/daycare concerns is warranted and may improve parent and/or child well-being.

Relevance to clinical practice

Development of clinical interventions targeting school/daycare may help parents manage their hypoglycaemia fear, improve their QOL, increase the number of young children with T1D who are properly cared for during school/daycare and, in general, improve parent and child well-being. It may be helpful to offer parent classes led by T1D-team members, such as T1D nurse educators, with the goal of learning how to effectively train teachers and school nurses on how to properly care for children with T1D. Parents will also likely benefit from comprehensive education regarding legal documents, such as 504 Plans in the USA and medical management plans. Parent-centred interventions led by a counsellor may include components that directly address school/daycare concerns, such as parent–teacher and parent–school nurse communication training and parent advocacy training. Parents would also likely benefit from clinical interventions that develop positive coping strategies, including cognitive-behavioural techniques and problem-solving strategies. Interventions that are tailored for specific child and medical characteristics are also warranted. These could include regimen-specific modules that address the unique challenges of conventional vs. intensive regimens and modules that are provided after a child experiences T1D-related unconsciousness, a seizure or a hospitalisation. Finally, to measure the success of these efforts and track ongoing challenges, regular follow-ups/check-ins by counsellors and T1D nurse educators with parents, teachers and school nurses during T1D appointments and school training and should be encouraged.

What does this paper contribute to the wider global clinical community?

  • Descriptive information regarding parents of young children’s perceptions of type 1 diabetes-related school/daycare experiences.

  • Preliminary associations of child and medical characteristics that contribute to school/daycare difficulties.

  • Recommendations for outpatient and school-based intervention development.

Funding

This work was supported by The National Institute of Diabetes and Digestive and Kidney Diseases, Grant Number R01DK080102, awarded to Randi Streisand, PhD.

Footnotes

Disclosure

The authors have confirmed that all authors meet the ICMJE criteria for authorship credit (www.icmje.org/ethical_1author.html), as follows: (1) substantial contributions to conception and design of, or acquisition of data or analysis and interpretation of data, (2) drafting the article or revising it critically for important intellectual content, and (3) final approval of the version to be published.

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