When Your Child Is Diagnosed with Diabetes: Parents’ Questions for the Healthcare Team
By Janet Silverstein, MD, Eric A. Storch, PhD, and Laura Williams, MS
Print version (PDF* 159k)
Learning that their child has diabetes
can be a very stressful experience
for parents, other family
members, and of course for the child.
In the days and weeks following diagnosis,
children and parents typically
have numerous questions for their
health-care team concerning how diabetes
may affect their family. School
nurses play an important role in helping
the child and family adjust to living
with diabetes. Although medical
appointments are the best time to have
questions answered, many families find
appointments to be rushed and overwhelming,
particularly given the complexities
of managing a new condition
such as diabetes. As a result, families
often leave their medical appointments
with unanswered questions.
While healthcare professionals almost
always solicit questions from
families, open-ended prompts such as “Do you have any questions?” may not
effectively elicit all of a family’s concerns.
Furthermore, even if parents do
ask questions, they may not fully understand
or remember the responses,
particularly given the large amount of
information that may be presented during
medical appointments.
Given the challenges of addressing the
questions of families with newly diagnosed
children, we can use several techniques
to provide important information.
Open-ended questions are a good starting
point. It is also helpful to follow up
with more specific ones (e.g., “Do you
have any questions about the emotional
impact of diabetes? Are you concerned
about managing your child’s diabetes at
school?”) The school nurse could suggest
that parents write down questions before
their medical appointments to help organize
and remember pertinent issues.
Perhaps the most effective means for addressing
the concerns of newly diagnosed
children and their families is to provide
written lists of resources. Written materials
are advantageous because families can
digest the information at their own pace.
The materials can reference web sites
or other information of interest, where
parents may learn more on a subject.
The school nurse could be an important
source of such family support materials.
The National Diabetes Education
Program’s Work Group on Diabetes
in Children and Adolescents has
developed a list of some of the most
common parental questions that can
be effectively used to stimulate further
questions during medical appointments – when a child is newly
diagnosed and later on as well. The
list addresses basic topics such as the
different types of diabetes and the
recommended frequency of medical
appointments, to more complex concerns,
such as when children should
begin taking responsibility for their
own diabetes care.
This resource also provides web sites
for parents and children to gather additional
information. By ensuring that
families of children with diabetes have
the opportunity to ask questions, the
health-care team can provide effective
support and information during a difficult
time. A copy of the questions is
provided here as a ready resource for
the school nurse to provide to families.
Contact the NDEP to find this
set of questions and other resources
for youth with diabetes: ndep.nih.gov/diabetes/youth/youth.htm or
1-800-438-5383.
When Your Child Is Diagnosed with
Diabetes: Parents’ Questions for the
Healthcare Team
Parents of children with diabetes often
have concerns about the disease,
its impact on their family, and how to
keep their children safe and healthy.
Use these questions to talk with your
child’s health-care team to learn about
your child’s diabetes care needs at diagnosis,
and later on as well. To find out
more about possible answers, link to
ndep.nih.gov/diabetes/parents/parents_questions.htm
QUESTIONS
What are the different types of diabetes?
- Which type of diabetes does our child have?
- Will it ever go away?
What does this mean for other members of our family?
- Does it mean our other children will
get diabetes too?
- What about other family members?
What are my child’s treatment goals?
- How can we help our child meet these goals?
- How often will our child need to visit
you each year?
What other healthcare team members
can help care for our child’s diabetes?
How can we work together as a family
to help our child?
- How can we help our child check
blood glucose, take insulin, eat healthful
foods, and learn about diabetes?
- Who can help us work together as a
family?
What emotional issues might our child and family face?
- Will diabetes affect the way our child
behaves?
- When do we start letting our child
manage his own diabetes care?
- Who can help us cope with these issues?
- Should we tell friends and family
about our child’s diabetes?
- Who can help us if we don’t have
medical insurance?
- What resources are there to help our
child in school?
What research is going on?
Three large nationwide studies are
under way.
- The TODAY study wants to find
the best ways to care for type 2
diabetes in children and teens
and is taking place in 13 medical
centers throughout the country.
To find out if you can join go to
www.TODAYstudy.org.
- Type 1 Diabetes TrialNet is a group
of studies looking at ways to prevent
or treat type 1 diabetes early
and help preserve insulin production.
To find out if you can join go
to www.diabetestrialnet.org/public.html or call 1-800-HALT-DM1
(1-800-425-8361).
- The SEARCH for Diabetes in
Youth study will help us learn
about how type 1 and type
2 diabetes differ, what medical
problems arise, the health
care children receive, and how
diabetes shapes their daily lives.
www.searchfordiabetes.org
A lot of other research is going on. To
find studies in your area, talk to your
health-care team and visit the JDRF and
ADA web sites (links below).
ADDITIONAL RESOURCES FOR PARENTS AND CHILDREN
American Diabetes Association (ADA)
www.diabetes.org or call 1-800-DIABETES
(1-800-342-2383)
Children with Diabetes
www.childrenwithdiabetes.com
Juvenile Diabetes Research Foundation
www.jdrf.org or call 1-800-223-1138
National Diabetes Education Program
www.ndep.nih.gov or call 1-800-438-5383
The U.S. Department of Health
and Human Services’ National
Diabetes Education Program is jointly sponsored by
the National Institutes of Health and the Centers for
Disease Control and Prevention with the support of
more than 200 partner organizations.
ABOUT THE AUTHOR
Janet Silverstein, MD is a member of the National Diabetes
Education Program’s Work Group for Children and
Adolescents With Diabetes and Professor and Chief, Pediatric
Endocrinology, University of Florida, Gainesville, FL.
Eric A. Storch, PhD and Laura Williams, MS are in
the Departments of Psychiatry and Pediatrics, University
of Florida, Gainesville, FL.
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