McKenzie Miller and Dr. Barbara Mandleco, Nursing
Background and Significance
Up to 40% of children in the United States require health related services above those needed by other children due to a chronic condition or illness, and as the majority of these children live at home, their presence greatly affects family members living with them (Mandleco, 2009). Although several chronic illnesses are seen in children, type 1 diabetes is one of the most common and the number of new cases is increasing each year (Lowes, Gregory, & Lyne, 2005). With the increasing frequency of this disease, it is critical that health-care providers know the effects it has on the diagnosed child and family members, including the siblings, since the condition affects the entire family.
This project will contribute to this body of knowledge and provide new insights on how to help typically developing siblings cope with the challenges of being a sibling of a child with type 1 diabetes. Therefore, the purpose of this project is to directly obtain information from siblings of children with type 1 diabetes regarding their experience of being a brother or sister to a chronically ill child, and then develop interventions that can be used when interacting with these siblings.
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. Thirteen of the 15 families were Latter-day Saint (LDS).7 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
The results will be presented according to each interview question.
Tell me a little about yourself and about your brother or sister with diabetes. Siblings generally chose to talk about activities they enjoyed doing in describing themselves, and in talking about a brother or sister with diabetes generally spoke about diabetes-related information (i.e. how long the child has had diabetes, how the disease is managed, etc.)
Tell me what you know about 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.”
Talk to me about some challenges you have experienced with having a sibling who has diabetes. Interestingly, many siblings felt that having a brother or sister with diabetes didn’t affect them much. A 12 year old female stated, “… 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.”
How has diabetes impacted your family? Most siblings’ initial responses were about their parents. (8 year old male) stated, “My mom and my dad have to pay a lot of money for all the supplies and stuff.” Some siblings showed awareness of parental stress. One child (9 year old male) answered, “My mom gets frustrated with my sister when she doesn’t do something”. When prompted about extended family, most siblings responded that the diagnosis caused concern or stress. (12 year old female) “…it freaked them out at first.”
What kind of information would be most helpful to you in living with your brother/sister with diabetes? In general, siblings‟ responses indicated a desire to learn more about diabetes and how they could be more involved in its management. (6 year old female) said, “…when I’m ten I can do tending and…I want to know how to do the shots” and also, “It would be helpful for me to learn more about CWD‟s diabetes. I want to know more about it when I get older. I want to grow up so I can help him.”
What would be your preferred method of receiving information that could be helpful to you? The overall response to this question was from the healthcare profession. (14 year old female) said, “I’d prefer our family doctor because we’ve had him for a long time so it‟s like trusting.” An insightful response came from (12 year old female) who stated, “I don’t wanna learn the hard way…I wouldn’t want to see it physically “cause that would be kind of scary…just like have a nurse or something, you know, like one of those presenters.”
Is there anything else you would like to share with us about your experience living with a sibling who has diabetes? Several siblings did not have anything else they wanted to share. However, (14 year old female) responded, “…just like, don’t like baby it because that just makes it worse…just stay calm with him. Like don’t freak out about the needles and blood and stuff, just keep going with it so like they can get used to it and not think that it’s like a bad thing.” (12 year old female) stated, “…just get as many, as much information as you can. And I promise you you’ll get over it- diabetes.”
Discussion
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. This research opportunity has been a great experience for me and has broadened my understanding of diabetes and the effect it has on siblings. I plan to implement the findings from my research in my nursing practice and to share my insights with others as well.
Sources
- Lowes, L., Gregory, J.W., & Lyne, P. (2005). Newly diagnosed childhood diabetes: a psychosocial transition for parents? Journal of Advanced Nursing, 50(3), 253-261.
- Mandleco, B. (In Press) Siblings of Ill Children. In M Craft-Rosenberg, (Ed.). Encyclopedia of Family Health, Thousand Oaks, CA: Sage.