Type 1 diabetes, an endocrine disease, affects about one in every 350 children in the U.S. The management of it is an ongoing and intensive responsibility. Parents and families of children with type 1 diabetes carry out demanding tasks several times a day such as checking blood glucose levels, administering insulin through a pump or injection, deciding what their child eats, overseeing physical activity and more.
Due to this, researchers at the USDA/ARS Children’s Nutrition Center (CNRC) at Baylor College of Medicine and Texas Children’s Hospital sought to learn about the emotional support parents of children with type 1 diabetes receive and how they would like to be supported.
“The need to continually perform these tasks, combined with their importance to the child’s health, may affect a parent’s stress level and their ability to routinely conduct diabetes-related tasks,” said professor of pediatric nutrition at the CNRC, Dr. Deborah Thompson.
“One of the things we hear a lot is that many parents have a really hard time. They feel exhausted and worried about the well-being of their child with diabetes,” said Dr. Marisa Hilliard, professor of pediatric psychology at Baylor and principal investigator of this study. “We wanted to more fully understand this experience to be able to help parents and develop resources and interventions to support them. We needed to know what their experiences are, what they want or what they prefer.”
There also is a financial aspect. “There are a lot of costs associated with managing diabetes. Insulin is very expensive. The devices are very expensive. The costs can all add up,” Hilliard said.
Studying 23 parents of children with type 1 diabetes from different demographics, researchers found that many parents look to others, such as close family and other resources, like their healthcare providers, for emotional support.
“Healthcare providers can offer validation as a form of emotional support. They can also notice when parents have unmet support needs and can help them get resources, whether referring them for mental healthcare or telling them about community resources,” Hilliard said.
She adds that some families also look to their child’s school or feel supported by the school nurse, and many families go online for emotional support and information about the disease.
“Emotional support does not require deep knowledge or familiarity with managing the child’s diabetes. Some parents told us they felt really emotionally supported when someone offered to pick up prescriptions or pick up or make dinner if they are too busy,” Hilliard said.
“This study suggests that emotional support from a variety of sources is important for parents of children with type 1 diabetes,” Thompson said.
Researchers plan to use this information to refine the types of interventions needed to help families manage the challenges of caring for children with this complex condition.
Type 1 diabetes resources for families:
By Taylor Barnes, senior communications associate at Baylor College of Medicine
