The Experiences of Siblings Living with a Child with Type 1 Diabetes

Purpose:

Diabetes is one of the most common chronic diseases in childhood and adolescence in the United States and currently affects roughly 215,000 people under the age of 20.  Approximately one in every 400 children has been diagnosed with type 1 diabetes, and every year more than 13,000 young people are newly diagnosed with the disease.¹ Indeed, this chronic illness affects all family members, including mothers, fathers, siblings and the child, as it is a disease with physical and emotional ramifications⁶ requiring lifestyle changes involving diet modification, blood glucose monitoring, and insulin administration^.  In fact, it is not uncommon for families raising children/adolescents with diabetes (CWD) to focus a fair amount of attention on making sure these children/adolescents do not experience major health complications. Researchers who study chronic illness in families have long acknowledged the importance of examining the entire family, instead of focusing only on the afflicted member. The importance of the siblings has also been underscored by research indicating sibling relationships are linked to many aspects of a child/adolescent with diabetes’ adaptation. The purpose of this study was to explore the experiences of siblings living with a child with type 1 diabetes.

Methods:

Fifteen families were recruited from Diabetes Management clinics and Diabetes camps. Most families (40%) earned between $75.001-$100,000/year and were Caucasian (86.6%). All fathers worked full-time with an average of 47 hours/week and about half of the mothers (46.6%) worked full or part-time with an average of 4.67 hours/week. Seven males and 6 females participated in the focus groups; the mean age of the siblings was 10.69 years. 

Siblings were interviewed and asked 7 questions after receiving IRB approval and assent/consent. The primary investigator and three research assistants transcribed the audio-taped interviews verbatim, and then examined the transcripts for common patterns and themes. Direct quotes best illustrating the themes were chosen to represent these themes. To ensure confidentiality, all identifying data was removed at the time of transcription. To ensure accuracy, transcribed interviews were reviewed by an alternate research assistant.

Results:

Participants all knew that their sibling had type 1 diabetes. Major themes included: minimal knowledge about diabetes; misunderstandings about the disease; not being personally affected; and, awareness of increased parental stress due to diabetes. Most siblings did not have a lot of knowledge about diabetes. Although many were familiar with diabetic terms such as ‘glucose’, ‘highs/lows’, ‘pumps’, etc.; they were generally not aware of what these terms meant. Many siblings also seemed to misunderstand diabetes management, illustrated by the following comment from (6 year old female) “…so like he eats something get he’ll…he’ll die. Well he won’t die he’ll just have to battle for it. And he won’t have anything to help it. I know there’s something to help it. And I know what it’s called...I know what it’s called but I forgot.” Participants also did not feel affected by their sibling’s diabetes as described by a 16 year old female: “… you just kind of get used to it after a while. You just hardly notice it. I don’t even know that she has diabetes…promise you, you will not notice it.” Although they did not feel that type 1 diabetes affected them, participants were aware that their parents were very affected. They described financial worries, diabetes management difficulties, and parental stress in general. Most participants wanted to know more about diabetes and how they could help their sibling. 

Conclusion:

Previous research shows having a chronic illness like diabetes has a significant impact on the individual, but little research has been conducted to determine the effects on siblings. This study revealed some interesting information that may be beneficial to additional research and practice: most siblings seemed unaware and have a lot of misunderstanding about diabetes and how it is managed. However, these siblings would like to learn more and be able to help/support their brother/sister with diabetes.  Families of children with diabetes could benefit by receiving additional information about how diabetes affects siblings of diagnosed individuals. Healthcare providers would also greatly benefit in knowing how to better offer support to these siblings and how to educate and involve them in caring for their brother or sister.