Parents with type 1 diabetes: Children have ‘limited involvement’ in diabetes management
Click Here to Manage Email Alerts
Parents with type 1 diabetes said their children are aware of their diagnosis, but typically do not play an active role in diabetes management, according to a study published in The Diabetes Educator.
“The family is recognized as an important resource to support diabetes self-management,” Jodi Krall, PhD, project director at the University of Pittsburgh Diabetes Institute, told Healio. “However, little is known about the role of children in their parents’ type 1 diabetes management, and in particular, young children who are living in the home with parents. Parent perceptions, whether they reflect the child’s viewpoint and experiences or not, provide valuable insight into the nature of the relationship.”
Krall and colleagues conducted a cross-sectional qualitative study involving participants of a previous study who were aged at least 25 years, had been diagnosed with type 1 diabetes for at least 1 year, and were living with or married to a romantic partner without diabetes for at least a year. Of this group, research assistants invited couples who had children aged 2 years or older who were currently living or previously lived in the same house as the parent with type 1 diabetes to participate. A total of 85 parents with type 1 diabetes and 55 romantic partners were enrolled.
All participants were interviewed over the phone for 20 minutes to 1 hour. Interviewers followed a semi-structured guide and asked questions about the background of the family, their child’s awareness of diabetes, their child’s knowledge of and experiences with specific diabetes topics, the effect of the parents’ diabetes on children, and how involved the child was with the parents’ diabetes care.
Child awareness
All the participants with type 1 diabetes said their child was aware of the disease and learned about it progressively from a young age. Most parents said they did not make a conscious decision to disclose diabetes to their children. During early discussions about diabetes, most parents said, they did not withhold information from their children. Parents who did withhold information said they did not discuss the potential for severe illness and death.
Most parents said they believed that their children learned about diabetes by observing their parents’ self-management and treatment. Researchers found that a child’s knowledge of glycemia corresponded with the type, frequency and severity of glycemic events. Children were also more aware of low blood glucose than high blood glucose because hypoglycemia was easier to identify than hyperglycemia.
Despite their awareness, most children were not heavily involved with their parents’ diabetes. Parents were asked to rate the level of their children’s involvement on a 4-point scale, with 1 point being not at all involved and 4 points being a lot involved. The mean score for each child was approximately 2 points. Some parents said children, especially younger ones, detracted from diabetes self-care, and some participants said they expected children to interfere with diabetes management.
Involvement in diabetes care
Many parents said the reason they did not involve their children in diabetes management is because they did not want to burden them. Some parents with type 1 diabetes said they primarily relied on their spouse for diabetes-related needs, whereas some spouses reported that a parent with type 1 diabetes had the ability to properly manage their diabetes with limited involvement from their child. New technology, including continuous glucose monitoring, was also cited as a factor for limited child involvement.
Most participants asked for more resources to enhance child awareness and preparedness so they could support their parents with type 1 diabetes. Both parents with diabetes and their spouses said they wanted to learn how to better communicate as a family and share perspectives on how diabetes affects individual family members.
“Although the children of participants in this study seemed to have limited involvement in diabetes management, parents expressed that children were an important source of emotional support,” Krall said. “Parents valued their children’s acceptance and understanding. This emotional support is likely to not only enhance parents’ psychological well-being, but also motivate to enact good self-care.”
Krall said the findings can be used to better inform diabetes providers so they can better prepare future parents with type 1 diabetes for the obstacles they may face when they have a child.
“Diabetes care teams, especially diabetes care and education specialists, can play an important role in preparing expecting and new parents for the dynamic challenges that come with the competing demands of diabetes self-care and caring for children,” Krall said. “As one parent in the study said, ‘Diabetes is a full-time job and so is a 2-year-old.’ As children get older, ensuring that they are informed and equipped to help parents may prevent or lessen the consequences of an adverse event.”
For more information:
Jodi Krall, PhD, can be reached at stottsj@upmc.edu.
Collapse
Read more about
Click Here to Manage Email Alerts