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'Normalizing' can help adolescents manage type 1 diabetes
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Adolescents are less able to cope with diabetes as they become independent, but better managed their disease following interventions that helped them to “normalize” or come to accept diabetes as part of the context of their lives, according to research published in The Diabetes Educator.
Elizabeth Babler, PhD, ARNP, CDE, from the University of Wisconsin–Milwaukee, College of Nursing, and C. June Strickland, PhD, RN, of the University of Washington, College of Nursing in Seattle, developed a paradigm for diabetes management that represents the phases adolescents experience while adjusting to life after diagnosis.
“These research findings place a different and positive perspective on diabetes management; the focus shifts to supporting wellness and maintaining a normal life rather than on illness,” the researchers wrote. “Findings are expected to be of value to health providers working with adolescents with type 1 diabetes, parents, nursing researchers and adolescents facing the challenge of diabetes management.”
The percentage of children who test their blood glucose levels four times per day decreases between late childhood and early adolescence, from 39% to 10%, suggesting that adolescents struggle to manage diabetes as they become more independent, according to the study. To better understand why adolescents were less able to manage their diabetes, researchers interviewed 11 adolescents aged 11 to 15 years with type 1 diabetes about their experiences and challenges of living with the disease.
Based on the interviews, researchers found that adolescents experienced 6 phases of normalizing:
- “Remembering the beginning of the journey,” when adolescents learn how to manage diabetes and realize that life changes after a type 1 diabetes diagnosis;
- “Balancing the blood sugars/preventing a crisis,” when adolescents recognize the symptoms of low and high blood glucose and take action by adjusting their glucose levels or seeking help;
- “Integrating diabetes into the world outside the home,” when adolescents manage their diet and inject insulin in public, as well as discuss their condition and realize they are “different”;
- “Moving the journey toward independence,” as they take on the burden of diabetes on their own; adolescents may disagree with parents about how they manage their care and learn that diabetes is hard to manage;
- “Figuring it out,” when adolescents accept diabetes as the new normal and believe they can responsibly manage their disease; and
- “Helping others,” when adolescents begin to have hope for a normal future and mentor others who are coping with diabetes.
The findings showed that adolescents had difficulties reaching the fifth phase as they struggled with phases two through four, often repeating steps. Some of the obstacles included the emotional response following diagnosis, a fear of needles, feeling embarrassed, not wanting to care for themselves in front of peers and rebellion.
To address these obstacles, researchers recommended establishing an approach to diabetes management that would decrease the fear of needles, provide a creative way to log and test blood glucose using technology, help parents and adolescents work together during the transition process to independence, and elicit support from peers and teachers. They also recommended discussing insulin pump therapy with insurance companies to reduce the number of injections.
“This paradigm on normalizing for the adolescent with diabetes is a novel contribution that increased understanding about their experiences during transition to self-care,” the researchers concluded. “Designing interventions at multiple levels are more likely to achieve success in normalizing and achieving good glucose control with positive outcomes.” – by Stephanie Viguers
Disclosure: The researchers report no relevant financial disclosures.
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