YJPDN-01205; No of Pages 11

Journal of Pediatric Nursing (2014) xx, xxxxxx

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Kerri Erickson, FNP, MS a , Donna Freeborn, APRN, PhD, FNP b ,

Susanne Olsen Roper, PhD c , Barbara Mandleco, RN, PhD d,,
Ashley Anderson, RN, BS e , Tina Dyches, EdD f
a

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Centerville, UT
College of Nursing, Brigham Young University, Provo, UT
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School of Family Life, Brigham Young University, Provo, UT
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College of Nursing, Brigham Young University, Provo, UT
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University Medical Center at Texas Tech University, Lubbock, TX
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McKay School of Education, Brigham Young University, Provo, UT

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Received 22 July 2014; revised 24 September 2014; accepted 26 September 2014

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Key words:

Authors of this qualitative descriptive study interviewed 30 parents concerning their experiences raising
a child or adolescent with type 1 diabetes (T1D) and celiac disease (CD). Analysis revealed six themes:
(a) health complications of T1D, (b) challenges of daily disease management, (c) expenses, (d) the
young person's emotional/mental health, (e) experiences with healthcare providers, and (f) experiences
with people outside the family and at school. Results suggest nurses need to be sensitive to challenges
young people living with T1D and CD and their parents face, conduct ongoing assessments, and provide
time during interactions to adequately address concerns.
2014 Published by Elsevier Inc.

Chronic illness;
Qualitative;
Type 1 diabetes;
Celiac disease;
Child/adolescent health

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MORE THAN 25% of individuals in the United States have

two or more concurrent chronic conditions, but the prevalence
of multiple chronic conditions is greater among older adults
than in children (U.S. Department of Health & Human
Services, 2010). For both older and younger individuals,
however, managing more than one chronic condition can result
in negative health consequences, increased financial burden,
and challenges to care management (Vogeli et al., 2007).
Indeed, the daily management of more than one chronic
illnesses is complex and involves multiple components,
including closely following treatment recommendations,
monitoring health decisions, and managing how the illness
impacts psychological, social, and physical functioning
(Bayliss, Steiner, Fernald, Crane, & Main, 2003).

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Parent Experiences Raising Young People with

Type 1 Diabetes and Celiac Disease

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Corresponding author: Barbara Mandleco, RN, PhD.

E-mail address: Barbara-Mandleco@byu.edu.
http://dx.doi.org/10.1016/j.pedn.2014.09.011
0882-5963/ 2014 Published by Elsevier Inc.

Consequently, for parents caring for a child with more

than one chronic illness, life can be emotionally, psychosocially, and financially challenging. Additionally, caring for a
young person with two chronic illnesses may be especially
burdensome because each disease has specific management
requirements that may affect health outcomes of the other
disease. Unfortunately, there is little information in the
literature related to caring for a child with two chronic
diseases. Therefore, this study sought to address a gap in the
research literature by describing parent experiences raising a
child/adolescent with two chronic diseases: type 1 diabetes
(T1D) and celiac disease (CD).
The association between T1D and CD has been recognized
for more than 40 years due to shared common gene alleles
(Visakorpi, 1969; Walker-Smith & Grigor, 1969). However,
past research related to T1D and CD has focused primarily on
the prevalence, association, and risk of individuals having both
conditions (Bhadada et al., 2011; D'Annunzio et al., 2009;

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Literature Review

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Type 1 Diabetes

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T1D is a chronic lifelong disease in which individuals have

high levels of blood glucose due to lack of insulin production
(PubMed Health, 2013). About .25% of youth have T1D, and
every year more than 13,000 young people are newly
diagnosed (Centers for Disease Control and Prevention
(CDC) [CDC], 2011). The primary treatments include daily
insulin administration, regimented eating schedules, and strict
carbohydrate intake monitoring (American Diabetes Association,
2014; CDC; Chase & Eisenbarth, 2011).
Recent studies have documented parent experiences
raising youth with T1D (Blinded, 2013; Hilliard, Monaghan,
Cogen, & Streisand, 2011; Lindstrm, man, & Norberg,
2010; Monaghan, Hilliard, Cogen, & Streisand, 2009; Popp,
Robinson, Britner, & Blank, 2014; Sullivan-Bolyai et al.,
2014). For example, parents raising children with T1D
experience grief and loneliness, need emotional support, are
fearful of allowing the child to go anywhere alone, feel
overwhelmed with daily responsibilities, and are concerned
about long-term complications (Author blinded; Bowes,
Lowes, Warner, & Gregory, 2009; Marshall, Carter, Toss, &
Brotherton, 2009; Popp et al., 2014). Parents also deal with
complex management requirements, feel stressed and
frustrated by responsibilities, and worry about interpreting
and managing blood glucose levels correctly (SullivanBolyai, Deatrick, Gruppuso, Tamborlane, & Grey, 2003). In
addition, parents of children with T1D are faced with
constant threats of hypo- or hyperglycemia, may be more
overprotective than parents of healthy children (Graue,
Wentzel-Larsen, Hanestad, & Sovik, 2005; Mullins et al.,
2004), and are not prepared to deal with an unexpected
diagnosis causing sudden life changes (Lowes, Gregory, &
Lyne, 2005). Finally, parents know it is important for young
people with T1D to independently manage their disease;
however, it is difficult to relinquish management responsibilities to the young person (Ivey, Wright, & Dashiff, 2009;
Sparud-Lundin, Ohrn, & Danielson, 2010; Sullivan-Bolyai
et al., 2014; Tuchman, Slap, & Britto, 2008; Wennick,
Lundqvist, & Hallstrom, 2009).

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Celiac Disease

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CD is an autoimmune condition often associated with

T1D (Bhadada et al., 2011). It is a disorder of gastrointestinal

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The Dual Diagnosis of T1D and CD

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As noted earlier, the association between T1D and CD has

been recognized for more than 40 years (Visakorpi, 1969;
Walker-Smith & Grigor, 1969), although the presence of CD
often occurs without clinical symptoms (Mahmud et al.,
2005; Samasca et al., 2011; Smyth et al., 2008). Interestingly,
T1D and CD are often diagnosed about the same
median age (4.5 years for T1D and 4.3 years for CD) in
children with conferred genetic risk for both diseases
(Simell et al., 2010). A diagnosis of CD and the presence of
antibodies suggestive of CD occur more frequently in
patients with T1D than in the general population, with the
incidence ranging from 9.2% (Samasca et al., 2011), to
11.1% (Bhadada et al., 2011).

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malabsorption affecting approximately 1% of the population

(Gainer, 2011). For people with CD, consuming glutencontaining foods triggers an immune-mediated response
stimulating antibody production that attack intestinal villi,
causing inflammation and damage to the small intestine, and
leading to malabsorption and malnutrition (Gainer, 2011;
Ruiz, 2011; Westerberg et al., 2006). The only treatment for
CD is strict adherence to a gluten-free diet which can
interfere with work and social life. Such adherence can
be expensive and difficult to maintain (Gainer, 2011; GarciaManzanares & Lucendo, 2011). Eating away from home is
also concerning because of cross-contamination when foods
are prepared in kitchens not gluten-free (Gainer, 2011).
There is a gap in the literature specifically examining
parental experiences raising a child with CD. One quantitative
study discovered quality of life was lower in the social
dimension for parents raising children with CD compared to
parents raising children without CD (de Lorenzo, Xikota,
Wayhs, Nassar, & de Souza Pires, 2012). We could find no
qualitative studies examining only parents' experiences raising
a child with CD, but found a study by Sverker, Ostlund,
Hallert, and Hensing (2007) who interviewed close relatives
(e.g., parents, spouses, and cohabitants) of persons with CD.
All relatives experienced anxiety and guilt, noted issues related
to deviating from the gluten-free diet and managing daily life,
and witnessed the person with CD in stressful social situations;
however, parent experiences were not analyzed separately
from other close relatives. Indeed, it is important to discover
parent experiences separately from close relatives as their
perceptions of raising a child/adolescent with CD may be
different than a close relative who does not live with the young
person 24 hours a day, 7 days a week.
Two studies examined perceptions and challenges of
teenagers with CD (Olsson, Hrnell, Ivarsson, & Sydner,
2008; Olsson, Lyon, Hornell, Ivarsson, & Snyder, 2009).
Teenagers described various dilemmas related to limited
accessibility of gluten-free food (Olsson et al., 2008) and
experienced the stigma of needing special meals, leading to
feelings of inequality, embarrassment, anger, alienation,
guilt, and discrimination (Olsson et al., 2009).

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Mojibian et al., 2009; Samasca, Iancu, Butnariu, Andreica, &

Dejica, 2011; Simell et al., 2010; Uibo et al., 2011; Warncke et
al., 2010), with little attention being directed towards parents'
perceptions of their experiences. Because the experiences and
challenges of raising children with both conditions are poorly
understood, it is important to study these parent's perceptions.

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Parent Perceptions of T1D and CD

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Method

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Design

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A qualitative descriptive design was used to learn about

experiences of parents raising young people with both T1D
and CD. This is because in qualitative descriptive studies,
researchers stay closer to their data than researchers
conducting other types of qualitative studies, and seek an
accurate accounting of events [and] the meanings participants
attribute to those events (Sandelowski, 2000, p. 336).
The research was part of a larger institutional review
board (IRB) approved study examining family (parent, child,
sibling) adaptation (e.g., knowledge of T1D, stressors/coping
responses; parenting practices, sibling relationships, challenges) when a child has T1D. From these studies, an
understanding of family processes as well as information
about the well-being of individual family members emerged.
However, further understanding of parental experiences

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After receiving IRB approval for this arm of the study,

families raising children with T1D and CD who were receiving
care at the diabetes clinic of a children's hospital in a western
state received information about the study from the clinic
dietician. Inclusion criteria were: participants needed to be
primary caregivers or legal guardians of a young person with
T1D and CD, who were mainly responsible for caring for/
managing the young person's diseases, able to speak and
understand the English language, and willing to talk about their
experiences raising a child/adolescent with both T1D and CD
in an open-ended interview. The dietician then provided names
of those families (n = 30) meeting the inclusion criteria and
interested in participating to the first author who contacted the
families and explained the study in greater depth. After
providing consent, 30 parents from 26 families (87% response
rate), including 25 mothers, 4 fathers, and 1 custodial
grandmother raising Caucasian youth with both T1D and
CD agreed to participate. On average, the young person with
T1D developed CD 2.17 years (SD = 2.67; range: 0
6.5 years) after being diagnosed with T1D, whereas those
initially diagnosed with CD developed T1D 3.5 years later
(SD = .71; range 34 years); 80% of the young people were
female. See Table 1 for additional demographic information.

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Data Collection

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The first author, an experienced pediatric nurse, conducted

all 6090 minute, digitally-recorded semi-structured interviews with participants either alone or together, most often in
the family home. Interviews were originally set up with the
mother, or parent who spent the most time meeting the child/
adolescent's needs. Fathers joined the interview if they wanted
to participate and their schedule allowed them to be home
during the interview. Interview questions focused on which
disease the young person was diagnosed with first, feelings
when the second diagnosis was confirmed, experiences with
healthcare providers and the community, concerns and
challenges related to the diseases now and in the future, help
received, and how the diagnoses affected the family (Box 1).
Attempts were made not to influence answers but rather allow
participants to talk freely about their experiences. Follow-up
questions were asked if clarification was needed. All
participants responded to the same questions; the interview
guide was not changed during the study. Participants received
a $20.00 gift card as compensation.

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Analysis

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The digitally-recorded interviews were transcribed verbatim, checked for accuracy, and entered into NVIVO 9 for

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Participants

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when raising a child/adolescent with the diagnosis of T1D

and a second chronic illness such as CD is needed.

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Both diseases require careful attention to dietary intake. For

example, people with T1D need to closely monitor carbohydrate intake whereas people with CD must be on a gluten-free
diet and avoid foods made with barley, rye, and wheat. Gluten
restrictions for a young person with T1D and CD impose
practical limitations and lead to several lifestyle restrictions as
there are many potential gluten exposures other than what is in
food, including vitamins, teas, supplements, lipsticks, lip
balms, and adhesives on envelopes and stamps; as well as arts
and crafts supplies (Gainer, 2011).
In addition, a gluten-free diet often contains high glycemic
index foods which can increase the risk of insulin resistance,
cardiovascular disease, and obesity; worsening metabolic
control if the young person also has T1D (Abid, McGlone,
Cardwell, McCallion, & Carson, 2011; Scaramuzza,
Mantegazza, Bosetti, & Zuccotti, 2013; Waldron-Lynch,
O'Loughlin, & Dunne, 2008). These individuals often need
to access appropriate foods when out of the home, and
frequently must educate others about each disease and how
each is treated. In sum, managing two chronic illnesses can be
challenging for both the young person with the illnesses and for
parents because both T1D and CD have long- and short-term
health complications needing to be prevented or managed. In
fact, research with adults (Vogeli et al., 2007) indicates that for
individuals with multiple chronic conditions, coordination of
care is more difficult, adverse drug events are more likely, and it
is more challenging for individuals to effectively take part in
their own self-care than for those with only one chronic
condition. Unfortunately, there is a paucity of research on the
effects on children with two chronic diseases, as well as parents'
perceptions regarding raising a child or adolescent with two
chronic diseases. Therefore, the purpose of this study was to
describe parent experiences raising a young person with two
chronic diseases: T1D and CD.

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Table 1

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t1:38

Child/adolescent
Current age
Age at diagnosis (T1D)
Age at diagnosis (CD)
Years living with T1D
Years living with CD
Diagnosed with celiac first
Gender (female)
Mothers
Age
Years of education
12 or fewer
1316 years
N 16 years
Employment
Full time
Part time
Fathers
Age
Years of education
12 or fewer
1316 years
N 16 years
Employment
Full time
Part time
Children in family
Household income
b$25,000
$25,001$50,000
$51,001$75,000
$75,001$100,000
N$100,000
Race (white)
Family type (two parent)

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Mean/% (SD)
12.5 (3.1)
6.7 (3.67)
8.5 (2.89)
5.8 (3.49)
4.24 (2.44)
15.0%
81.5%

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23.1%
57.6%
19.2%
37.0%
33.3%

43.88 (7.74)

29.6%
44.4%
11.0%

88.9%
3.7%
3.7 (1.69)
7.6%
19.2%
38.5%
19.2%
15.4%
96.2%
85.2%

1. Tell me a little about your family.

2. Talk to me about your experiences raising a child with T1D and CD.
a. Which disease was your child diagnosed with first? T1D or CD?
b. How did your feelings or sense of burden differ when your
child was diagnosed with the second chronic disease?
c. How did you learn about each disease?
d. What lead up to you finding out that your child had a chronic
disease? (What led you to seek medical advice?)
2. Talk to me about your experiences with your child's
healthcare provider(s).
a. Who or what was most helpful to you in gaining knowledge
and understanding about your child's illnesses?
b. Have most of your contacts in the healthcare system been with
a primary care provider or a specialist, in meeting the health
needs of your child?
c. What kind of support or information have you received from
healthcare professionals in terms of caring for your child?
d. What would be most helpful in your relationship with doctors
and nurses that care for your child?
3. What are your primary concerns and biggest challenges regarding
your child with diabetes and celiac disease?
4. Tell me about the kind of help you receive on a daily basis.
5. How involved are other family members in managing your child's
diseases?
6. How have T1D and CD affected other family members?
7. What concerns do you have about your child's independence,
as he/she grows older?
a. At what age do you expect your child to be independent in
meeting most of his/her own physical (health related) needs?
8. Is there anything else you would like to tell me?

41.81 (6.84)

data storage and management. Initially open coding

identified themes (Patton, 1990), which were then refined,
cross-checked, and adjusted as needed through discussion
with the first, second, and fourth authors, who independently
coded the data, until reaching consensus. The third and fifth
authors suggested modifications in the codes after reading
transcripts, and then further refined the identified themes
and subthemes into categories. Finally, exemplars were
identified and chosen through selective coding. To assure
trustworthiness, the first author conducted all interviews in
an undisturbed location chosen by participants, and kept
memos detailing the interactions. The first and fifth authors
transcribed interviews; the third and sixth authors reviewed
the themes/subthemes/categories and quotes to ensure
they correctly reflected the interviews (Denzin & Lincoln,
2000). The sample size was deemed adequate; saturation
was noted when transcriptions of interviews revealed no
new information.

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Variable

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B:1

Box 1 Interview questions.

Demographics.

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Results

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Analysis revealed six themes focusing primarily on

parental concerns. They included (a) long/short-term health
complications of T1D; (b) challenges of managing both
diseases every day; (c) financial concerns associated with
managing both diseases; (d) the young person's emotional/
mental health; (e) experiences with healthcare providers;
and (f) experiences with people outside the family or at
school (Table 2).

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Health Complications of T1D

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Participants frequently mentioned long- and short-term

health complications of T1D rather than complications
associated with CD, and the long-term complications of
T1D were mentioned most frequently, probably because of
the severity of these potential complications. For example,
one mother of a 16-year-old daughter (diagnosed with T1D
at age 6 and CD at age 15) explained, I want her to have a
full lifeI want her to live past 25 and still have her foot.I
will always worry. The mother of a 7 year-old daughter
(diagnosed with T1D at age four and CD 6 months later)
said, The biggest concernis her long term healthand not
have those bad diabetes side effects

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Parent Perceptions of T1D and CD

t2:1
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t2:3

Table 2

t2:4

Health complications

t2:7
t2:8
t2:9

Themes

Description

Vision loss, kidney failure, bowel cancer, cardiovascular disease, infertility,

osteoporosis, and limb amputations.
Challenges of daily disease management Frequent monitoring of blood glucose and carbohydrate intake;
diet restricted to gluten-free foods.
Financial concerns
Medical cost of insulin and diabetic supplies
Diet limited availability and costliness of gluten-free foods
Time meal preparation; time spent at pharmacy and doctor visits.
Child's emotional/mental health
Feelings of isolation, being different from peers, being teased and misunderstood.
Experiences with healthcare providers
Valued: a team approach, responsive to questions, willing to listen,
open and honest dialogue, personal relationship with child, and patient advocate.
Experiences with people outside
Public and extended family misconceptions and lack of understanding
the family and at school
about T1D and CD including; people with T1D can eat sugar and children with
CD do not need to follow a strict gluten-free diet. Concerns about proper care during school.

t2:6

Perceptions of parents raising children with type 1 diabetes and celiac disease.

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t2:5

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Financial Concerns

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Challenges of Daily Management

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Challenges managing both diseases every day centered on

checking blood sugars, providing healthy gluten-free foods,
and the effects of both diseases on family life. Although all
parents had to make adjustments because they were helping
their child manage two diseases, some parents commented
specifically on challenges associated with T1D management.
For example, the mother of a 13-year old daughter diagnosed
with T1D at age 8 and CD at age 11.5 said, There's been a
few times where she's been less than normal and you have to
tell yourself, Oh we need to have her check her blood
sugar' I have to remind her every night to check her blood
sugar. If I'm not here, she doesn't check it.
In contrast, other parents focused on what they had to do
to manage CD. Parents of a 6 year-old son (diagnosed with
CD at age 17 months and T1D at age 2) said,

Participants described the added expense involved in

managing the two diseases, noting insulin and supplies
required to manage T1D are costly, as are gluten-free foods.
An added expense related to CD was time needed to
purchase and prepare meals and create separate gluten-free
areas in the kitchen. Speaking of the costs of managing
T1D, the custodial grandmother of a 12-year-old female
(diagnosed with T1D and CD at age 11) stated, I would
worry about kids with these disabilities without insurance
because I know what it costs for a pump. The mother
of a 17-year-old daughter (diagnosed with T1D at age 9
and CD at age 10), concerned about the safety of
her daughter because of the expense of diabetes
management, said
I worry that because it is so expensive that she'll try to
cut corners, take less insulin, re-use supplies, things like
that, to save money I'm afraid she'll put herself at risk
because she won't be able to afford it and she won't ask
for help.

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[Mother] I can say that everything we do is a challenge.

Everywhere we go we have to plan ahead.... [Father adds]
When we try to go on a family trip for a few days just to
get a break, you've got to pack your silverware,
crockpot, things to cook, becauseyou don't knowif
they have gluten-free. If they do, can you trust it?

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(diagnosed with T1D at age 9 and CD 6 months later) noted,

Our whole family has had to change and alter the way we
do things.It changes your whole life, your whole family,
your whole future, where you go, when you go.

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Parents also expressed concerns about hypoglycemia, a

short-term complication of T1D. For example, the mother of
four children with T1D, including a 14-year-old daughter
diagnosed with T1D at age 18 months and CD at age 8, said,
I worry she'll be somewhere and she'll go low, and nobody
will know what to do.

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Managing the two diseases clearly presented some

disruptions to families. One mother of a 7-year-old daughter
(diagnosed with both diseases within 6 months of her fourth
birthday) commented, I felt like I didn't even know what to
feed her. I was still kind of getting down the particulars of the
diabetes and then having that [CD] on top of it, it was really
overwhelming. Another mother of a 12-year-old daughter

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Every family mentioned the expense of gluten-free foods.

The mother of a 12-year-old daughter (diagnosed with T1D
at age 2 and CD at 6) said, The gluten-free foods are about
double the price of regular foods.We were going to put the
whole family on the gluten-free diet, butno way can we
afford it. Another mother explained how she and her 11year-old daughter (diagnosed with both diseases at age 8)
spent a lot of time grocery shopping to find gluten-free food
without spending too much money, We have to go through
five grocery stores over 5 hours so that we're not spending a
total arm and a leg.

423
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K. Erickson et al.

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447

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The mother of a 19-year-old son (diagnosed with both

diseases at 14) was also concerned about her son's mental
health. She said,
The worst aspectmy son had some real acceptance
problems the reality were sinking in.... He refused to
have anything to do with JDRF [Juvenile Diabetes
Research Foundationsupport groups and activities] at
all. He said he didn't want to go be around freaks and
be reminded how sad life was.

480
481

Experiences with Healthcare Providers

482

Participants believed relationships with a team of health

care providers were important, and many noted the
helpfulness of these providers. For example, one mother of

483
484

The biggest factor was how much they cared.Our

general doctor, who was not a specialist in any area,
was the most helpful because when she didn't know she
would lead us to somebody who did, and I think the
sense of feeling like we're cared for in the medical
community was more important.

491

445

441

N
C
O

440

439

486
487
488
489
490

492
493
494
495
496
497

A mother whose 10-year-old son was diagnosed with

T1D at 17 months and CD at age 8 especially appreciated the
counsel of her primary care provider, who told her:

498

You can treat him like a victimor you can say; yes,
you have T1D now what? You are his coach and how
you treat his disease is how he's going to view it. You
view it as a big dealhe's going to die, that's how he's
going to view it. You view it as okyou can live your life,
then that's how he'll deal with it.

501

R
O
O

Often participants talked about their child/adolescent's

emotional health by mentioning how the young person with
both diseases felt left out of activities where food was served
and/or experienced inappropriate comments from peers. The
mother of a 17-year-old daughter (diagnosed with T1D at age 9
and CD at age 10) said, It's really hard because she already
feels differentbecause she has to deal with the diabetes stuff
but then to add the whole food thingstuff she wantsshe can't
have them because they have gluten in them.
The mother of two children, a 15-year-old son (diagnosed
with T1D at 2 and CD at 9) and a 12-year-old daughter
(diagnosed with both diseases around age 5) said, It's sad to
see them go to parties and stuff and not be able to eat with
the other kidsthey get teased a lot and other kids say that
their food looks like dog food.
Many parents noted concerns about the young person's
mental health, especially related to T1D. For example, one
father of a 6-year-old son with both diseases and a 9-year-old
son with T1D said, Kids are ruthless and just kind of
ridicule and tease just when they see a pump attached, that's
a target of jokesteasingbullying.
The mother of a 12-year-old daughter (diagnosed with
T1D at 8 and CD at 9) talked about her daughter's emotional
frustration and negative reactions toward T1D, One time
she was so angry and so mad that she took an insulin pen and
drew up about 10 units and said I'm going to give myself this
many units and there is nothing you can do about it.

438

444

437

485

499
500

502
503
504
505
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507

Many parents discussed how helpful it was to have a

dietician on the team of providers, as reflected by the parent
of a 17-year-old daughter (diagnosed with T1D at age 9 and
CD at age 10): At the diabetic clinic, they have a crowd of
people who will come in and help you. The dieticians, the
educators, they all know what everybody is doing they're
never conflicting with each other.
A few parents mentioned nurses. One mother of four
children with T1D (including a 14-year-old daughter
diagnosed at age 18 months with T1D and CD at age 8)
said, I can call any time and the nurses are always really
nice. They don't make me feel guilty like I'm not doing a
good job and they're just always there.

508

Experiences with People Outside the

Family or at School

521

Several parents mentioned misconceptions and attitudes

regarding T1D and CD held by people outside the family or at
school. One mother of a 16-year-old daughter diagnosed with
T1D at age 5 and CD at age 7 had the following to say, Other
people are not aware of it. They don't care about it. They don't
understand the severity of it. Another mother of a 14-yearold daughter (diagnosed with T1D at 9 and CD at 10) said,
Every once in a while you'll run into people, [who say] Oh,
she has to have her special food. And they can be kind of
rude about it.
Parents also commented about their experience with
schools. Some participants reported positive experiences
with teachers and school nurses. For example, one family
chose to not change schools when moving. This mother with
an 8-year-old daughter (diagnosed with T1D at five and CD
at seven) related:

523

Young Person's Emotional/Mental Health

436

a 10-year old daughter (diagnosed with T1D at 7 and CD

at 8) said about health care providers, I think just
compassion and understanding that it's hard; and that they
understand that we're doing the best we can. The mother
of an 18-year-old diagnosed with CD at age 9 and T1D at 12
spoke warmly about her son's healthcare providers:

443

435

442

Finally, to deal with challenges related to gluten-free

foods, most parents have the added expense of purchasing
special utensils and a designating a section of the kitchen as
gluten-free only. One mother of a 6-year-old son
diagnosed with CD at 18 months and T1D 6 months later
described how they had to adapt their kitchen after receiving
the diagnosis, We bought new pots and pans, silverware,
plates; we changed our kitchen, never kept a waffle iron or
toaster, nothing.

434

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Parent Perceptions of T1D and CD

539
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543

We've heard of a lot of horror stories from other

parents and families thathave had some trouble at
their schools and people not quite understandingto
have people that we trust caring for her was clearly our
first priority so that's why we stayed here.

544

547
548
549
550
551
552
553

When he was first diagnosed, the nurse there was really

good. She brought in a video and showed the whole sixth
gradeand then she had him check [his blood sugar]
right there in front of everybodyso that they could see
what he had to go through every day, several times a day
to be able to survive.

546

A mother of a 19-year-old son (diagnosed with CD at 9

and T1D at 12) credited a school nurse for her son's positive
school experience:

R
O
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545

554

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I talked to her friends and just said, I can't be there like at

lunchtime or recess so would you please be my eyes if [my
daughter] repeats herself or acts weird or looks confused,
would you go tell a teacher that she needs to check?

572
573

571

570

Finally, several parents talked about the importance of

connecting with community support groups and on-line
resources. One parent mentioned her teenage daughter found
a Web site where she could go on and talk and chit chat
with other kids that are diabetic, which was helpful.

569

568

Discussion

575

The purpose of the present study was to examine parental

perceptions regarding their experiences when raising a child
or adolescent with T1D and CD. Similar to research with
older adults (Bayliss et al., 2003; Piazza, Charles, &
Almeida, 2007; Vogeli et al., 2007; Yorgason et al., 2010),
themes emerging from these data centered on challenges of
daily disease management, financial concerns, and emotional
and mental health issues. Themes related to experiences with
health care providers and people outside the family and at
school also appeared.
The first theme related to future health problems
commonly associated with T1D, with parents speaking less
frequently about problems related to CD. Serious long- and
short-term health problems are associated with both T1D and
CD, which may be why most parents talked openly about
their concerns. However, the focus on health issues

578
579
580
581
582
583
584
585
586
587
588
589
590

577

N
C
O

574

576

558

557

556

However, other parents reported concerns about what would

happen at school. A mother of four children with T1D, including
a 14-year-old daughter (diagnosed with T1D at 18 months and
CD at age 8) expressed her concerns, I worry a lot when they're
at school.[that] nobody will know what to do.
Consequently, some parents were proactive in educating
others to provide a support system for their child. For instance,
one mother of a 10-year-old daughter (diagnosed with T1D at 7
and CD at 8), concerned about hypoglycemia said,

555

associated with T1D seemed for these parents to be more

of an issue, perhaps because they are more familiar with
T1D health complications than they are with CD health
complications, as their children have lived longer, on
average, with T1D than they have lived with CD. Our
findings support past research showing parents of children
with T1D also have concerns about future health problems
(Blinded, 2013; Bowes et al., 2009; Ivey et al., 2009; Lowes
et al., 2005; Marshall, Carter, Rose, & Brotherton, 2009;
Popp et al., 2014; Wennick & Hallstrom, 2006), differing
from studies of close relatives of persons with CD, who did
not focus on health complications related to CD (Olsson et al.,
2009; Sverker et al., 2007).
Nurses can play a critical role in helping parents
understand the importance of following management
protocols for both diseases in order to minimize long- and
short-term complications. If parents seem worried about the
complications of one disease over the other, it is helpful to
listen and reassure them regarding following protocols and
verify that managing both diseases every day is challenging.
Reminding the young person of the importance of complying
with treatment regimens for both diseases is critical to avoid
long- and short-term health complications of each disease.
Nurses can also provide families with resources such as
parent groups where issues and challenges are shared with
other parents, and offer specific suggestions to overcome
some of these challenges discussed.
Second, parents frequently described challenges associated with managing two diseases on a daily basis including
providing healthy gluten-free foods, checking blood sugars,
and the effects of both diseases on family life. Past studies
using parents of youth with T1D as participants also
described management requirements of T1D as overwhelming (Blinded, 2013; Bowes et al., 2009; Lowes et al., 2005;
Mitchell et al., 2009; Monaghan et al., 2009; Monaghan,
Sanders, Kelly, Cogen, & Streisand, 2011; Samasca et al.,
2011; Sullivan-Bolyai et al., 2003) and requiring lifestyle
adjustments (Bowes et al., 2009; Marshall et al., 2009).
Research with close relatives of individuals with CD also
noted the increased amount of work needed to maintain the
required diet (Sverker et al., 2007), as did those with CD
(Sverker, Hallert, & Hensing, 2005). Indeed, helping the
young person comply with dietary requirements of each
disease plus overseeing or assisting in monitoring blood
sugar levels and insulin intake is challenging.
Since T1D and CD are lifelong conditions, upon receiving
the diagnoses, parents need to recognize that constant
vigilance, awareness, and attention over the course of the
child's life are necessary, 24 hours a day, 7 days a week, and
365 days a year. Therefore, nurses need to be sensitive to
both psychological and social challenges children/adolescents living with T1D and CD and their parents face over
time, especially those related to food restrictions needed to
manage each disease appropriately, and how gluten-free
foods affect insulin needs since a gluten-free diet often
contains high glycemic index foods which can increase the

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657

diseases to talk with other young people regarding how

they respond to comments made by peers or adults in the
community may also be helpful. Such interactions could be
in person, through social media, online discussion groups or,
attending camps for children with T1D or CD. Refer to Box 2
for a list of specific resources.
Similar to previous research with parents raising children
with T1D (Howe, Ayala, Dumser, Buzby, & Murphy, 2012;
Smaldone & Ritholz, 2011), our participants thought it was
important to have a team care for the child/adolescent and
recognized supportive provider relationships assisted them
successfully meet challenges. Our participants also believed
health professionals were knowledgeable and available,
cared, did not make them feel guilty, and helped them
frame the disease with the child in a positive manner.
Nurses should recognize the importance of engaging
families as partners, showing mutual respect and trust, and
providing undivided attention during interactions. These
health care providers should also assist children/adolescents
assume a more active role in disease management as
appropriate and help both parents and youth view T1D and
CD as a part of life, not something stopping them from
participating in activities. Consequently, patience, understanding and encouragement, and providing information on
how to help others understand food restrictions necessary for
managing both diseases, are critical. It is imperative that
youth with T1D and CD receive support from a registered
dietitian who can educate them and their families about
following an appropriate medical nutrition therapy protocol
specific to each disease (Schwarzenberg & Brunzell, 2002).
Finally, parents discussed experiences with people
outside the family and at school. Frequently, people outside
the family did not know much about either disease or were
not supportive of the child/adolescent, and disease management requirements. These results support findings from other
studies related to T1D and CD as well (Blinded, 2013;
Maslakpak, Anoosheh, Fazlollah, & Ebrahim, 2010; Olsson
et al., 2009; Smaldone & Ritholz, 2011; Sverker et al., 2007;
Wennick et al., 2009). Several parents also worried about the
young person while at school; most worries related to TID

656

655

http://glutendude.com/dear-gluten-dude/teenager-withceliac-disease/
http://www.livingwithout.com/issues/4_28/foodallergies-teenagers-3454-1.html
http://www.celiac.com/articles/563/1/ROCK-RaisingOur-Celiac-KidsNational-Celiac-Disease-SupportGroup/Page1.html
http://celiac.org/chapters/
http://www.celiaccentral.org/kids/
http://www.diabetes.org/in-my-community/

654

Box 2 Resources for young people with T1D and CD.

653

652

651

650

649

risk of insulin resistance and worsen metabolic control (Abid

et al., 2011; Scaramuzza et al., 2013; Waldron-Lynch et al.,
2008). It is also critical to conduct ongoing assessments and
provide time during interactions to adequately address
concerns. This is particularly important if those brought up
by parents and the child/adolescent differ.
Another theme was the expense associated with both diseases;
all parents in our study commented on the added financial burdens
related to the gluten-free diet. Specifically, parents talked about
buying separate gluten-free kitchen equipment, as well as the cost
of gluten-free foods, which are more expensive than foods
containing gluten (Stevens & Rashid, 2008). A number of parents
also discussed the expense of diabetic supplies, supporting
existing data. In fact, in 2007, the average annual costs for young
people with T1D were over $9000, compared to almost $1500 for
those without T1D; most costs were for prescription drugs,
outpatient/inpatient care, and diabetes supplies (Shrestha, Ahang,
Albright, & Imperatore, 2011).
Because both diseases are expensive, it is critical
providers talk with parents regarding ways to minimize
expenses such as buying diabetic supplies and gluten-free
foods in bulk or from pharmacies or stores where costs are
more reasonable. Educating parents about simple, readily
available gluten-free foods is also important.
Fourth, parents talked about the young person's emotional
and mental health. This was apparent when their son or
daughter was left out of activities where food was served
because of no gluten-free alternative, or when peers made
hurtful comments related to T1D management requirements.
Indeed, relationships with peers of youth with T1D can be
complicated (Whittemore, Jaser, Guo, & Grey, 2010), and
many teens struggle with sharing information about their
disease with friends (Sullivan-Bolyai et al., 2014; Syzdlo,
Van Wattum, & Woolson, 2003) because they are concerned
about friends' reactions (Buchbinder et al., 2005).
Parents in our sample described their children as
responding in negative ways to their medical conditions,
supporting research that shows children with diabetes are at
risk for developing psychological problems (Kokkonen &
Kokkonen, 1995). As a matter of fact, children with diabetes
are twice as likely and adolescents up to three times as likely
to be diagnosed with depression as youth without diabetes
(Grey, Whittemore, & Tamborlane, 2002). Furthermore,
teens with CD often feel sad, frustrated, alienated, angry, and
left out due to no gluten-free foods at school, friends' houses,
restaurants, or other gathering places (Olsson et al., 2009)
and individuals with CD may feel ashamed, isolated,
and sometimes experience stressful social situations (Sverker
et al., 2005, 2007).
The child's mental and emotional health is important.
Therefore, nurses need to encourage the young person to
discuss issues related to each disease during their interactions. In addition, listening and offering advice on how to
deal with others' comments or behaviors or referring to
mental health professionals might be needed. Providing
opportunities or resources for young people with both

N
C
O

648

647

K. Erickson et al.
B:1
B:3
B:4
B:5
B:6
B:7
B:8
B:9
B:10
B:11
B:12
B:13

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Parent Perceptions of T1D and CD

777

Although these findings fill a gap in the literature related

to parent experiences when raising a child/adolescent living
with T1D and CD, there are some limitations. First, since the
sample was small, lived in the western United States, was not
ethnically or culturally diverse, accessed routine medical
care, provided for their child's healthcare needs, and
most families earned more than $50,000 per year, the
results should not be generalized to other populations.
Second, we only interviewed parents; it would be useful
to also interview the young person and siblings and then
compare interviews across family members. Third, some
parents were interviewed together rather than each
parent being interviewed separately; responses may
reflect differences in caregiving according to gender if
mothers and fathers were interviewed separately rather
than together.
Despite these limitations, results provide information
related to parent experiences raising a young person with the
dual diagnosis of T1D and CD. However, future research
needs to target a more diverse social, cultural, ethnic, and
socioeconomic sample raising young people with T1D and
CD so comparisons can be made across demographics. It
would also be important to gather data from all family
members over time using both qualitative and quantitative
methods. Finally, exploring experiences of parents raising
children with two other disabilities/chronic conditions may
be helpful in learning if experiences vary across dual
diagnoses, or if parents are concerned about management
requirements of one disease over the other, so this
information can then be used to provide interventions
tailored for individual families.

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Funding for this project was received from the Brigham

Young University Office of Graduate Studies.

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rather than CD. Concerns about school are noted in other

studies by parents raising children with TID (Author blinded;
Lange, Jackson, & Deeb, 2009; Marks, Wilson, & Crisp,
2013; Smaldone & Ritholz; Wennick & Hallstrom, 2006), as
well as in research with youth with CD (Olsson et al., 2009;
Sverker et al., 2007).
Consequently, it is important for nurses to help parents
and young people with TID and CD assist people outside the
family and in schools understand each disease and its
management requirements (Marks et al., 2013). It is also
critical for family, friends, and peers who interact with those
with both diseases know reasons for particular behaviors
related to high or low blood glucose and what to do if
symptoms occur. Since these young people need to strictly
adhere to a gluten-free diet, those outside the family and at
school also should be encouraged to avoid making negative
comments related to this restriction. School nurses are
encouraged to provide age-appropriate education to students,
teachers, and school administrators related to the symptoms
and effects of T1D and CD.

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