Navigating adolescence can be tough for any young person and their parents, but children and teens with diabetes face additional challenges in the transition to adulthood. The partnership between parent and child will change as the child becomes more confident and motivated to manage his or her own condition.
Success of transition has lasting impact
The American Diabetes Association, in its 2018 position statement on type 1 diabetes in children and adolescents, states that young adults who undergo an ineffective transition to self-management may be at increased risk for adverse outcomes, including deterioration of glycemic measures and increased hospitalizations.
Young adults who are not prepared for the loss of parent support in the management of their diabetes are less likely to take their medications as prescribed and achieve blood glucose targets. This places them at risk for acute diabetes complications, including “chronic macrovascular and microvascular complications, psychosocial challenges and early mortality,” according to the ADA.
Planning and preparation are essential for a successful transition. The ADA recommends beginning a gradual transition at least 1 year before responsibilities are handed off.
Children of all ages who want to take responsibility for their diabetes management should be encouraged to become involved in an appropriate manner.
Many factors affect readiness
Children of all ages who want to take responsibility for their diabetes management should be encouraged to become involved in an appropriate manner, according to Anastasia Albanese-O’Neill, PhD, ARNP, CDE, Endocrine Today Editorial Board Member and director of diabetes education and clinic operations in the division of pediatric endocrinology at the University of Florida.
“Whenever a child is motivated and developmentally able, we want to engage them in their own care,” Albanese-O’Neill told Endocrine Today. “Any time a child can be involved in a positive way and is motivated to do so, they should be encouraged.”
Tasks can start small and become more complex over time. For example, a small child can choose which finger to prick.
“It builds their confidence,” Albanese-O’Neill said.
Next, they may be able to check their blood glucose levels, enter the levels into a pump, prepare insulin and/or give their own injections.
“The key is not to give too much responsibility too early,” Albanese-O’Neill said. “A graduated process toward independence is really best.”
No set age is the perfect time for everyone to begin this transition or to take on new tasks, according to Sarah Lyons, MD, assistant professor of pediatric diabetes and endocrinology at Baylor College of Medicine/Texas Children’s Hospital. “It is dependent on the child’s development and also on their diabetes status in general,” said Lyons, who is part of the transition team in the hospital’s Getting Ready for Emerging Adulthood & Transition (GREAT) program.
Even as adolescents become the primary manager of their diabetes care, “they [should] still have that interdependence with their parents or others who are closely involved with their diabetes management,” she said.
Emphasize teamwork, communication
During this time of transition, diabetes management should be a team effort involving the child, parents or other caregivers, and health care providers.
“Communication as a family is essential, in addition to working together with your doctor and diabetes educator as a team,” Albanese-O’Neill said.
Conflict can arise when the child and parent have different understandings of the appropriate level of parental involvement. Adolescents may feel frustrated if they are expected to take on the burden of their own care too quickly and feel unprepared. However, they feel equally frustrated if parents have trouble letting go of control. Meanwhile, adults may have serious concerns about their child’s health and safety.
“Open conversations about how parents can be supportive and what the young adult needs can clarify each person’s roles,” Marisa Hilliard, PhD, assistant professor of pediatrics at Baylor College of Medicine and Texas Children’s Hospital, told Endocrine Today.
Hilliard, a pediatric psychologist, collaborates with Lyons on the GREAT team. “Setting up systems to reassure parents that the young adult is safe and is being responsible — such as sending parents a text message in the morning so parents do not have to wonder if the young adult is OK — can go a long way to alleviate parents’ worry about their child’s well-being,” she said.
Most issues can be mitigated by a carefully planned transition process that is not rushed, according to Hilliard.
“Working on this process gradually as the teen approaches young adulthood is much easier than trying to make all of these changes in a very short time,” she said. “It can also help to focus on what the teen or young adult is doing well instead of focusing on ‘mistakes.’ This can help empower young adults and build their confidence and their parents’ confidence for diabetes management during the transition.” – by Amanda Alexander
Chiang JL, et al. Diabetes Care. 2018;doi:10.2337/dci18-0023.
For more information:
Anastasia Albanese-O’Neill, PhD, ARNP, CDE, can be reached at firstname.lastname@example.org.
Marisa Hilliard, PhD, can be reached at email@example.com.
Sarah Lyons, MD, can be reached at firstname.lastname@example.org.
Disclosures: Albanese-O’Neill, Hilliard and Lyons report no relevant financial disclosures.