ORIGINAL ARTICLE

Relations among school/daycare functioning, fear of hypoglycaemia

and quality of life in parents of young children with type 1 diabetes
Linda J. Herbert, Lauren Clary, Victoria Owen, Maureen Monaghan, Vanessa Alvarez and
Randi Streisand

Aims and objectives. To investigate the type 1 diabetes-related school/daycare

experiences of parents of young children and to examine the relationship among What does this paper contribute
child school/daycare functioning, parent fear of hypoglycaemia and parent type 1 to the wider global clinical
diabetes-related quality of life. community?
Background. Parents of young children who attend school/daycare must rely on • Descriptive information regard-
others for daily type 1 diabetes management. Worry about school/daycare type 1 ing parents of young children’s
diabetes management may cause parental distress and contribute to diminished perceptions of type 1 diabetes-
related school/daycare experi-
parent quality of life. Parental concerns about type 1 diabetes management in
ences.
young children in the school/daycare setting have not been well described in the • Preliminary associations of child
literature. and medical characteristics that
Design. Descriptive correlational and cross-sectional parent report of question- contribute to school/daycare dif-
naires design. ficulties.
Methods. As part of a randomised controlled trial for parents of young children • Recommendations for outpatient
and school-based intervention
with type 1 diabetes, 134 parents completed self-report measures at baseline.
development.
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 regi-
men 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 func-
tioning 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.

Authors: Linda J. Herbert, PhD, Licensed Psychologist, Center for
Translational Science, Children’s National Health System, Washing-
ton, DC, USA; Lauren Clary, PhD, Licensed Psychologist, Division
of Endocrinology & Diabetes, Children’s National Health System,
Washington, DC, USA; Victoria Owen, BA, Research Assistant, Cen-
ter for Translational Science, Children’s National Health System,
Washington, DC, USA; Maureen Monaghan, PhD, Licensed Psychol-
ogist, Center for Translational Science, Children’s National Health
System, Washington, DC, USA; Vanessa Alvarez, BA, Research
Assistant, Center for Translational Science, Children’s National
Health System, Washington, DC, USA; Randi Streisand, PhD,
Licensed Psychologist, Center for Translational Science, Children’s
National Health System, Washington, DC, USA
Correspondence: Linda J. Herbert, Licensed Psychologist, Center
for Translational Science, Children’s National Health System, 111
Michigan Avenue, NW, Washington, DC 20010, USA. Telephone:
+1 202 476 4552.
E-mail: lherbert@childrensnational.org

© 2014 John Wiley & Sons Ltd

Journal of Clinical Nursing, 24, 1199–1209, doi: 10.1111/jocn.12658 1199
LJ Herbert et al.
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.
Key words: diabetes management, hypoglycaemia, quality of life, type 1 diabetes,
young children
Accepted for publication: 16 June 2014
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 glu-
cose (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 nec-
essary 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 unconscious-
ness 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
1200
environment (American Diabetes Association 2012). The
goal is for children to be fully integrated into school/day-
care activities and learning opportunities while remaining
medically safe. However, the transfer of care that occurs
when children attend school/daycare may prompt addi-
tional 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 investigat-
ing 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 (Ameri-
can Diabetes Association 2012) and requires schools to pro-
vide 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’ per-
ceptions of adherence to ADA guidelines indicated that
© 2014 John Wiley & Sons Ltd
Journal of Clinical Nursing, 24, 1199–1209
Original article
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 her-
self 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 manage-
ment. Although this was the preferred outcome in this situ-
ation, 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 manage-
ment, 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 carbohy-
drate 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 train-
ing 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
© 2014 John Wiley & Sons Ltd
Journal of Clinical Nursing, 24, 1199–1209
School/daycare functioning and type 1 diabetes
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 regi-
mens, 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 set-
ting 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 chil-
dren (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/day-
care 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 base-
line 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 con-
1201
LJ Herbert et al.
tacted by phone. Of these, 203 patients were eligible.
Eighty-two per cent of parents (n = 167) who were con-
tacted 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 proce-
dure of the study. Approximately two weeks after the letter
was mailed, families were called by a research team mem-
ber 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 medi-
cal 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 gen-
eral 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 Manage-
ment 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 impres-
sions of the T1D care provided in their child’s school/day-
care 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, peri-
ods of unconsciousness and hospitalisations were collected
by parent report on a 12-item medical questionnaire devel-
oped by the research team.
Medical chart review
Children’s medical charts were examined for their history
of T1D-related hospitalisations and acute complications,
1202
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 glycosylat-
ed 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 Diabe-
tes Association 2013).
Hypoglycaemia Fear Survey – Parents of Young Children
(HFS-P-YC)
The Hypoglycaemia Fear Survey – Parents of Young Chil-
dren (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 assess-
ing behaviours in which the parent engages to avoid hypo-
glycaemia. 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 hypo-
glycaemia fear. Patton et al. (2007) reported acceptable
internal consistency scores for the worry (a = 0
62), behav-
iour (a = 0
89) and total (a = 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 func-
tioning. 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 (a = 0
86–0
90) (Varni et al. 2001).
Parent Diabetes Quality of Life Questionnaire (PDQOL)
The Parent Diabetes Quality of Life Questionnaire (Vandag-
riff 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 (satis-
faction, 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 (a = 0
64–0
89).
© 2014 John Wiley & Sons Ltd
Journal of Clinical Nursing, 24, 1199–1209
Original article
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, cor-
relational and chi-square analyses were conducted to deter-
mine whether child and parent demographic and medical
characteristics were related to school/daycare characteristics
and parent concerns. Next, children’s school/daycare func-
tioning on the PedsQL and parents’ psychosocial function-
ing on the HFS-P-YC and PDQOL were assessed, and
correlational analyses among these variables were con-
ducted. 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 par-
ents (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 insu-
lin regimen (basal/bolus or insulin pump).
Demographic medical information
Most parents reported that they were responsible for per-
forming 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 uncon-
sciousness and 8% of children had at least one T1D-related
hospitalisation other than at the time of diagnosis docu-
mented in their medical chart. Parent report and medical
© 2014 John Wiley & Sons Ltd
Journal of Clinical Nursing, 24, 1199–1209
School/daycare functioning and type 1 diabetes
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 chil-
dren were enrolled in school/daycare prior to T1D diagno-
sis. 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 par-
ents 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 alto-
gether. 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 tea-
cher/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 manage-
ment plan for school/daycare. A minority of children attend-
ing 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 fre-
quent T1D-related school/daycare concerns, parents
reported a variety of concerns (see Fig. 1). Concerns with
1203
LJ Herbert et al.
Percentage of parents who endorsed T1D-related school/daycare
concerns
Toileting and self-care
Recording BG levels in a logbook
Managing inappropriate behaviour
Promoting awareness & acceptance of T1D
Finding a school that will enrol a young child with
T1D
Checking BG levels
Developing a diabetes medical management plan
Responding to sickness
Needing to be available by telephone in case of
emergency
Supervising snacks/meals
Retraining new teachers/staff to appropriately
manage T1D
Administering/adjusting insulin
Responding to extreme (high or low) BG episodes
Initially training teachers/staff to appropriately
manage T1D
0 10
initial training and retraining of teachers/staff to appropri-
ately manage T1D, administering/adjusting insulin, respond-
ing to extreme (high or low) BG episodes and supervising
snacks/meals were the most frequently endorsed problems.
Aim 2: Medical/demographic characteristics related to
school/daycare
A series of correlational and chi-square analyses were con-
ducted to assess how specific demographic and medical
variables were related to parents’ perceptions of school/day-
care 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 tea-
cher/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.
With respect to medical characteristics, parents of chil-
dren who were on a conventional insulin regimen reported
that their child’s diagnosis had less impact on their school/
1204
25
34
44
45
45
45
49
53
53
59
60
61
65
71
Figure 1 Percentage of parents who endorsed
20 30 40 50 60 70 80 90 100 T1D-related school/daycare concerns.
daycare enrolment decision than parents of children who
were on an intensive insulin regimen, v2(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 uncon-
sciousness 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 hospi-
talisations, p < 0
05, yet this relationship was not signifi-
cant 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’ hypo-
glycaemia fear and T1D-related QOL. See Table 1 for sig-
nificant correlations. Parents of older children reported
poorer school/daycare functioning on the PedsQL,
© 2014 John Wiley & Sons Ltd
Journal of Clinical Nursing, 24, 1199–1209
Original article School/daycare functioning and type 1 diabetes

Table 1 Correlations among demographic/medical variables and parents’ school/daycare experiences

Acute T1D-related
Child Parent Complications Hospitalisations
Child Age Ethnicity Employment Regimen (Parent Report) (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 0
02 0
01 0
04 0
10 0
22* 0
03
caregiver go to your child’s school/daycare
to assist with T1D management?
Did T1D affect your decision to enrol your 0
18* N/A N/A N/A 0
12 0
19*
child in school/daycare?
Do you have a ‘Diabetes Medical 0
28** N/A N/A N/A 0
05 0
05
Management Plan’ in place
for your child at school/daycare?
How confident are you that a school 0
27** 0
24** 0
18* 0
23** 0
08 0
07
or daycare facility could be
fully capable of caring
for a child with T1D when
a parent is not present?
How important is it to you that your 0
02 0
18* 0
04 0
14 0
02 0
02
child’s teacher or daycare provider
be fully capable of caring for your child
with T1D when you are not present?
How difficult was it for you to instruct your 0
07 0
09 0
04 0
13 0
03 0
09
child’s teacher/daycare provider to fully
care for your child with T1D?
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

0 = No, 1 = Yes; Ethnicity: 0 = Caucasian, 1 = Non-Caucasian; Parent Employment: 0 = Not Employed, 1 = Employed; Regimen: 0 = Con-
ventional, 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 < 0
05, **p < 0
01, ***p < 0
001.

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. Par-
ents 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/day-
care functioning scores on the PedsQL were significantly neg-
atively 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 per-
ceived 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 hypo-
glycaemia 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 con-
ducted 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 function-
ing and hypoglycaemia worry were significantly associated
with parent T1D-related QOL, b = 0
36, p < 0
001,
b = 0
33, p < 0
001, yet hypoglycaemia avoidance

© 2014 John Wiley & Sons Ltd

Journal of Clinical Nursing, 24, 1199–1209 1205
LJ Herbert et al.
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 dis-
tinct 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 par-
ents reported that their child was denied school/daycare en-
rolment 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 manage-
ment 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 associ-
ated with greater school/daycare concerns. Parents of youn-
ger 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 indepen-
dently 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 fed-
eral 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
1206
on an intensive regimen may be concerned that the addi-
tional T1D management skills required of school nurses
and/or staff (i.e. insulin dose calculation, insulin administra-
tion) may make T1D school/daycare management too com-
plex 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 repli-
cation, they provide unique insight regarding which parents
may have the most difficulty with school/daycare T1D man-
agement 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), dem-
onstrating 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 func-
tioning 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/day-
care settings, a few limitations warrant discussion. First,
participants were predominantly Caucasian, married, mid-
dle- 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 Diabe-
tes in Youth Study Group et al. 2006). However, it is nota-
ble 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 pos-
sible that fathers and other caregivers are concerned about
© 2014 John Wiley & Sons Ltd
Journal of Clinical Nursing, 24, 1199–1209
Original article
different aspects of T1D care in school/daycare than moth-
ers 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 caregiv-
ers, ethnic minorities, single-parent households and house-
holds 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 regi-
mens. 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 his-
tories, 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 par-
ents’ 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 vari-
ables 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 per-
sonnel, would further validate the findings of this study.
More specifically, additional research measuring responses
from school teachers and nurses may advance our under-
standing of what resources are necessary to improve train-
ing and parent–teacher communication about T1D, thus
improving parent T1D-related QOL and reducing hypo-
glycaemia fear, but also ensuring that children achieve the
glycemic control standards recommended by the ADA.
Data collection via observational methods may also be war-
ranted, as they could document the day-to-day school/day-
care experiences of young children with T1D and identify
additional areas for intervention. Finally, this study relied
on cross-sectional, baseline data from a longitudinal
© 2014 John Wiley & Sons Ltd
Journal of Clinical Nursing, 24, 1199–1209
School/daycare functioning and type 1 diabetes
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 preva-
lence 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 com-
fortable leaving their children at school/daycare without con-
cern 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-based 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/day-
care may help parents manage their hypoglycaemia fear,
improve their QOL, increase the number of young chil-
dren 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 par-
ent–teacher and parent–school nurse communication train-
ing and parent advocacy training. Parents would also
likely benefit from clinical interventions that develop posi-
tive coping strategies, including cognitive-behavioural tech-
niques 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 conven-
tional vs. intensive regimens and modules that are
provided after a child experiences T1D-related
1207
LJ Herbert et al.

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.
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 pub-
lished.

Disclosure
The authors have confirmed that all authors meet the
ICMJE criteria for authorship credit (www.icmje.org/ethi-
cal_1author.html), as follows: (1) substantial contributions
Funding
This work was supported by The National Institute of Dia-
betes and Digestive and Kidney Diseases, Grant Number
R01DK080102, awarded to Randi Streisand, PhD.

References
American Diabetes Association (2012) Dia-
betes care in the school and day care
setting. Diabetes Care 35(Supplement
1), S76–S80.
American Diabetes Association (2013)
Standards of medical care in diabetes-
2013. Diabetes Care 36, S11–S66.
Amillategui B, Calle J, Alvarez M, Cardiels
M & Barrio R (2007) Identifying the
special needs of children with type 1
diabetes in the school setting. An over-
view of parents’ perceptions. Diabetic
Medicine 24, 1073–1079.
Amillategui B, Epifanio M, Calle J & Giralt
P (2009) Special needs of children with
type 1 diabetes at primary school: per-
ceptions from parents, children, and
teachers. Pediatric Diabetes 10, 67–73.
Bade-White PA & Obrzut JE (2009) The
neurocognitive effects of type 1 diabe-
tes mellitus in children and young
adults with and without hypoglyce-
mia. Journal of Developmental and
Physical Disabilities 21, 425–440.
Barnard K, Thomas S, Royle P, Noyes K
& Waugh N (2010) Fear of hypo-
glycaemia in parents of young children
with type 1 diabetes: a systematic
review. BMC Pediatrics 10, 50.
Brener ND, Burstein GR, DuShaw ML,
Vernon ME, Wheeler L & Robinson J
(2001) Health services: results from
the school health policies and pro-
grams study 2000. Journal of School
Health 71, 294–303.
Goldbeck L (2006) The impact of newly
diagnosed chronic paediatric condi-
tions on parental quality of life. Qual-
ity of Life Research 15, 1121–1131.
Golden MP, Russell BP, Ingersoll GM,
Gray DL & Hummer KM (1985)
Management of diabetes mellitus in
children younger than 5 years of age.
American Journal of Diseases of Chil-
dren 139, 448–452.
Grey M (2009) Coping and psychosocial
adjustment in mothers of young chil-
dren with type 1 diabetes. Children’s
Health Care 38, 91–106.
Hatton DL, Canam C, Thorne S &
Hughes AM (1995) Parents’ percep-
tions of caring for an infant or toddler
with diabetes. Journal of Advanced
Nursing 22, 569–577.
Jacquez F, Stout S, Alvarez-Salvat R, Fer-
nandez M, Villa M, Sanchez J, Eidson
M, Nemery R & Delamater A (2008)
Parent perspectives of diabetes man-
agement in schools. Diabetes Educator
34, 996–1003.
Kushion W, Salisbury PJ, Seitz KW & Wil-
son BE (1991) Issues in the care of
infants and toddlers with insulin-
dependent diabetes mellitus. Diabetes
Educator 17, 107–110.
MacLeish S, Cutler L & Koontz M (2013)
Adherence to guidelines for diabetes
care in school: family and school
nurse perspectives. Diabetes Care 36,
e52.
Nabors L, Lehmkuhl H, Christos N & Ad-
nreone T (2003) Children with
diabetes: perceptions of support for
self-management at school. Journal of
School Health 73, 216–221.
Patterson CC, Dahlquist GG, Gyurus E,
Green A & Soltesz G (2009) Incidence
trends for childhood type 1 diabetes in
Europe during 1989-2003 and pre-
dicted new cases 2005-20: a multicen-
tre prospective registration study.
Lancet 373, 2027–2033.
Patton SR, Dolan LM, Henry R & Powers
SW (2007) Parental fear of hypoglyce-
mia: young children treated with con-
tinuous subcutaneous insulin infusion.
Pediatric Diabetes 8, 362–368.
Pinelli L, Zaffani S, Cappa M, Carboniero
V, Cerutti F, Cherubini V, Chiarelli F,
Colombini MI, La Loggia A, Pisanti P,
Vanelli M & Lorini R (2011) The
ALBA project: an evaluation of needs,
management, fears of Italian young
patients with type 1 diabetes in a
school setting and an evaluation of
parents’ and teachers’ perceptions.
Pediatric Diabetes 12, 485–493.
SEARCH for Diabetes in Youth Study
Group (2007) Incidence of diabetes in
youth in the United States. Journal of
the American Medical Association 24,
2716–2724.
SEARCH for Diabetes in Youth Study
Group, Liese A, D’Agostino RB Jr,
Hamman R, Kilgo P, Lawrence J, Liu
LL, Loots B, Linder B, Marcovina S,
Rodriguez B, Standiford D & Wil-
liams D (2006) The burden of diabetes
mellitus among US youth: prevalence
estimates from the SEARCH for Dia-
betes in Youth Study. Pediatrics 118,
1510–1518.
Silverstein J, Klingensmith G, Copeland K,
Plotnick LP, Kaufman F, Laffel L,
Deeb L, Grey M, Anderson B, Holz-
meister LA, Clark N & American Dia-
betes Association (2005) Care of
children and adolescents with Type 1
Diabetes: a statement of the American
Diabetes Association. Diabetes Care
28, 186–212.
Sullivan-Bolyai S, Deatrick J, Gruppuso P,
Tamborlane W & Grey M (2002)

© 2014 John Wiley & Sons Ltd

1208 Journal of Clinical Nursing, 24, 1199–1209
Original article School/daycare functioning and type 1 diabetes

Mothers’ experiences raising young
children with type 1 diabetes. Journal
for Specialists in Pediatric Nursing 7,
93–103.
Turque B (2012) Feds probe treatment of
diabetic students. The Washington
Post.
Vandagriff JL, Marrero DG, Ingersoll GM
& Fineberg NS (1992) Parents of
children with diabetes: what are they
worried about? Diabetes Educator 18,
299–302.
Varni JW, Seid M & Rode CA (1999) The
PedsQL: measurement model for the
pediatric quality of life inventory.
Medical Care 37, 126–139.
Varni JW, Seid M & Kurtin PS (2001)
PedsQL 4.0: reliability and validity of
the Pediatric Quality of Life Inventory
version 4.0 generic core scales in
healthy and patient populations. Medi-
cal Care 39, 800–812.
Varni JW, Gottschalk M, Burwinkle TM,
Kaufman F, Jacobs JR & Jones KL
(2003) The PedsQL in type 1 and type
2 diabetes: reliability and validity of
the Pediatric Quality of Life Inventory
Generic Core Scales and Type 1 Dia-
betes Module. Diabetes Care 26, 631–
637.
Vehik K, Hamman R, Lezotte D, Norris J,
Klingensmith G, Bloch C, Rewers M
& Dabelea D (2007) Increasing inci-
dence of type 1 diabetes in 0- to 17-
year-old Colorado youth. Diabetes
Care 30, 503–509.

The Journal of Clinical Nursing (JCN) is an international, peer reviewed journal that aims to promote a high standard of
clinically related scholarship which supports the practice and discipline of nursing.

For further information and full author guidelines, please visit JCN on the Wiley Online Library website: http://
wileyonlinelibrary.com/journal/jocn

Reasons to submit your paper to JCN:

High-impact forum: one of the world’s most cited nursing journals, with an impact factor of 1
316 – ranked 21/101
(Nursing (Social Science)) and 25/103 Nursing (Science) in the 2012 Journal Citation Reportsâ (Thomson Reuters,
2012).
One of the most read nursing journals in the world: over 1
9 million full text accesses in 2011 and accessible in over
8000 libraries worldwide (including over 3500 in developing countries with free or low cost access).
Early View: fully citable online publication ahead of inclusion in an issue.
Fast and easy online submission: online submission at http://mc.manuscriptcentral.com/jcnur.
Positive publishing experience: rapid double-blind peer review with constructive feedback.
Online Open: the option to make your article freely and openly accessible to non-subscribers upon publication in Wiley
Online Library, as well as the option to deposit the article in your preferred archive.

© 2014 John Wiley & Sons Ltd

Journal of Clinical Nursing, 24, 1199–1209 1209
This document is a scanned copy of a printed document. No warranty is given about the
accuracy of the copy. Users should refer to the original published version of the material.