Kerr, Elizabeth
Parent Perspectives of their Child’s Diagnosis with Type 1 Diabetes
Faculty Mentor: Dr. Donna Freeborn, College of Nursing
Introduction
Type 1 diabetes is an autoimmune disease where the beta cells of the pancreas stop
secreting insulin. Insulin is the hormone that delivers blood sugar to the body tissues.
This life changing diagnosis affects not only the newly diagnosed child—It affects the
whole family.
Although research has previously been done on parent experiences raising a child with
type 1 diabetes, no research has been done from the perspective of a parent who has
raised their child to adulthood. This unique outlook provides greater perspective and
insight on the experience as a whole. The purpose of this project was to increase
understanding of the diagnosis experience for parents of children with type 1 diabetes,
and to recognize how healthcare professionals can better support newly diagnosed
families.
Methodology
My project is based off of a larger research project exploring the experiences of parents
who have raised their children with type 1 diabetes to adulthood. My research specifically
focused on analyzing parent experiences at the time of diagnosis.
After IRB approval, we interviewed eighteen parents who had a child (or children)
diagnosed before the age of eighteen, and who have now raised that child to adulthood.
The interview process consisted of two qualitative interviews. In the first interview,
participants were simply asked to describe, in their own words, their experiences raising
their child (or children) with type 1 diabetes. The interviewer included prompts, such as,
“Can you tell me more about,” but the interviewee directed the flow of topics discussed.
In a second interview, we asked parents eight specific questions, such as, “What
challenges do you remember?” and, “Tell us about when your child(ren) were diagnosed
with type 1 diabetes.” We transcribed each interview verbatim. Then we analyzed the
interviews for patterns and major themes and coded them into NVivo, a software program
for qualitative data analysis.
Results
During my analysis, it became apparent that grief, fear, and distress were very common
feelings for parents at the time of diagnosis. Parents also commonly discussed
experiences with education at the time of diagnosis. Many felt overwhelmed at all they
had to learn, and it was evident that the emotional distress of having a newly diagnosed
child with diabetes is a barrier to learning. Finally, the interactions parents had with
healthcare professionals at the time of diagnosis were critical.
Discussion
Grief and Emotional Distress
Families of a newly diagnosed child go through a grieving process. Parents discussed
feelings of denial, frustration, deep sadness, etc. Parents need time to mourn their loss
and come to terms with the new diagnosis and all that it entails. Parents expressed
feelings of fear, worry about the future, and general feelings of distress.
Education
As previously discussed, families of a newly diagnosed child suffer great emotional
distress. Parents expressed that this shock and distress can make learning more difficult.
Further, the amount of information that parents need to understand in order to properly
care for their child can be extremely overwhelming. Healthcare professionals must
address emotional needs and provide support before attempting to formally teach
parents and children correct diabetes management. Understanding the grieving process
and the distress parents go through will allow educators to adapt their teaching and
interventions as needed.
Healthcare Professionals
Healthcare professionals have a large impact on families during the diagnosis
experience. For example, it is distressing for parents of a newly diagnosed child when
healthcare providers make the negative consequences of poorly controlled glucose
levels the focal point of the discussion on diabetes management. Conversely, healthcare
professionals who are honest but optimistic empower parents to learn the tools
necessary to best care for their child. Healthcare professionals can really set the tone for
families by the way they respond to a child’s diagnosis. Further, nurses and diabetic
educators can be a great strength to a family dealing with a new diagnosis by showing
empathy, having patience while teaching, and offering self.
Conclusion
Learning from parents who have raised children with type 1 diabetes to adulthood offers
a unique perspective of the diagnosis experience. This allows parents to reflect on how
the diagnosis affected the whole experience of raising their child. Interviewing parents of
children with type 1 diabetes brought greater insight into how healthcare professionals
can best support families during the new diagnosis of a child.
Families go through a grieving process when dealing with a new diagnosis of type 1
diabetes, so healthcare professionals must address this and provide emotional and
psychological support. Education at the time of diagnosis is critical, and healthcare
professionals must assess for barriers to learning, including shock from diagnosis. The
way healthcare professionals view and explain a child’s diagnosis greatly impacts the
family. Doctors, nurses, and diabetic educators are in a key position to provide hope,
education, and empowerment during this time.
These findings lead me to further examine interactions between healthcare professionals
and families dealing with type 1 diabetes, not just at the time of diagnosis, but throughout
the whole experience. I will be presenting these results at the Utah Conference on
Undergraduate Research this February.