One day, a few months after my daughter’s T1D diagnosis, she and her younger brother were playing in another part of the house while I busied myself with household chores. (Okay, I was probably just browsing on my phone, but still.) These were the days before she was capable of recognizing highs and lows on her own, so I had a habit of verbally checking in every fifteen minutes or so. “How do you feel? Are you hungry? Is your heart racing?” This time, I shouted upstairs, “Grace, are you okay?”
“Yessss,” came the annoyed reply. Then a second voice, “I’m okay too, Mom.”
My son was not quite three years old when he said this, and he certainly did not yet comprehend the need for my surveillance. Nevertheless, his response startled me, because it signified something that I had probably already begun to intuit: I was becoming singularly focused on diabetes. Anything unrelated to T1D, including my other child, was an afterthought.
Three years in, I still worry that he is not getting enough attention. And that he doesn’t have a life of his own. And that he is “deprived” (he doesn’t get to eat desert frequently enough). But I’ve also come to realize that, in some respects, he may have a leg up on his peers. After all, he witnesses his loved ones needing and giving care on a daily basis. He is also involved in family efforts to advocate and raise money for organizations like Insulin for Life, which provides life-saving medication and supplies to T1Ds across the globe. Surely, these experiences are molding him to be a more compassionate human being, right?
While there is extensive research on the psychosocial functioning of the siblings of a chronically ill child, there is less data about D-siblings specifically. The most comprehensive source may be an article from the journal Pediatric Nursing, entitled “The Experience of Siblings of Children With Type 1 Diabetes,” which surveys existing literature on the positive and negative impact of living with a sibling with T1D. This piece also suggests ways to improve siblings’ experiences.
Surveyed research shows that the siblings of children with T1D are more at risk than their peers of developing emotional disturbances, low self-esteem, and poor social skills. Some experts surmise that this is because family time around the table is no longer positive. “Instead of being a comforting and enjoyable time of family togetherness, meal times can become stressful, with anxiety regarding blood glucose levels.” Furthermore, the types of foods served may change dramatically after a diagnosis. When siblings can no longer eat their favorite or usual foods, they may resent the patient and/or parents.
There are other reasons for a sibling’s stress: he or she may be afraid that diabetes is contagious or that it will ruin the patient’s life. These fears usually abate after the initial adjustment period and as the sibling grows older, though other problems may develop in their place. For instance, the sibling may become envious of parental attention on the patient. “The mother, usually the most important adult in a child’s life for socialization, caregiving, and support, often has a closer relationship with the patient than the siblings because of the patient’s dependence on the mother for disease management and daily care.” This can lead to resentment or even acts of aggression toward the patient (such as hiding her diabetes supplies under his bed…).
There is a correlation between sibling distress and parental and patient distress. The more uneasy a parent or patient about T1D, the more uneasy the sibling. There is also a correlation between sibling distress and the recency of a diagnosis. Generally speaking, the more time that has passed, the better for affected siblings. Perhaps surprisingly, there is no strong link between sibling outcomes and the family’s financial situation.
However, in various studies, siblings reported positive experiences, as well. Many siblings enjoy the increased responsibility that comes with caregiving. Siblings are often tasked with providing emotional support during stressful times (blood glucose testing, injections), and this can strengthen bonds between siblings. Also, most siblings work to protect the patient from harm and teasing outside the home, which further strengthens the familial relationship.
Overall, the experience of having a sibling with diabetes is nuanced. One might feel jealousy toward the patient and fear for his or her well being at the same time. She may sympathize with the patient and resent the parents, or vice versa. Whatever the sibling’s feelings and attitudes, they are likely to transform over time.
Despite their integral role in managing diabetes, most siblings never undergo formal training or education. Rather, their knowledge of diabetes care comes from observation. Perhaps, the author suggests, health care providers could find ways to include these family members in diabetes care. For instance, providers could organize events for siblings or provide age-appropriate resources.
Providers should also encourage parents to schedule one-on-one time with children without diabetes and to find opportunities to preserve family togetherness. “Parents can include siblings in meal planning, food shopping, and cooking to acknowledge them as an important part of the family and minimize possible resentment from the loss of their favorite meals or a flexible eating schedule.” Finally, siblings should be given more opportunities to share their feelings in a supportive environment.
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