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Young adults and Type 1 diabetes: transitioning support from pediatric programs into adult care

Oct. 11, 2012

By Melissa Danguecan

Many teenagers view the transition period into young adulthood as an exciting time filled with new beginnings and greater independence. But, for young adults between the ages of 18-30 with Type 1 diabetes – the transition into this new life stage isn’t quite the same. They require continuous assistance and support from family, friends and their health care providers.

Years of research and several studies have determined that health outcomes for young adults with Type 1 diabetes are poor, namely because their quality of treatment can decline heavily once they’re no longer eligible for pediatric care. For young adults, this disruption in care and loss of guidance in treatment can lead to the mismanagement of their diabetes and in more extreme cases, hospitalizations or even death.

“Transitioning care from a pediatric program into an adult care program is essential to improving the diabetic health outcomes for this age group, explains Cheryl Harris-Taylor, social worker, The Centre for Integrated Diabetes Care and Chronic Disease Management at Women’s College Hospital.

“They’re moving from a safe, protective environment, where their parents and multidisciplinary medical team are involved in their care and suddenly losing this support once they become adults. This high-quality care cannot and should not end once they turn 18,” says Harris-Taylor.

There are several reasons that contribute to the sudden vulnerability of the young adult population with Type 1 diabetes. Firstly, managing a diabetic condition can be increasingly difficult when balancing other priorities, such as moving away from home for the first time, or starting a new job or university. For these young adults, this developmental life stage becomes a time for seeking autonomy. With several competing life priorities, they tend to feel overwhelmed – unable to handle the pressure of dealing with their health and the responsibilities of early adulthood at the same time.

“For many young adults with this condition, their diabetes becomes secondary. Watching their diet and monitoring insulin and glucose levels several times a day is a daunting task for any young adult, especially those coming from a program where doctors, nurses, dietitians  and social worker are more involved,” says Harris-Taylor. “It’s unfair to expect that they can suddenly take care of themselves without continuous support from the health-care system.”

This tremendous stress placed upon young adults with Type 1 diabetes can result in chronic mismanagement of their health. Balancing a part-time job with school and other social priorities means there is less time being spent on crucial aspects of self care. Fast food can become an easier and quicker option for meals, leading to a poor diet. With less encouragement from family and health-care workers, less time may be devoted to monitoring insulin and glucose levels.

Another considerable factor is the financial constraints that result from moving away from home and struggling with medical costs. A range of needs that were previously taken care of by parents or guardians, such as rent, food and medication, suddenly become the financial responsibility of the individual. While there are several medical plans from universities that will cover up to 80 per cent of medication costs, paying for the remaining amounts is still a financial obligation that many young adults simply cannot afford.

“The combination of these geographic, financial and emotional stress factors can be scary for young adults with Type 1 diabetes to deal with. They want to move forward with their lives and experience new things like everyone else, but are ill-equipped for the challenges they face in their adult years,” adds Harris-Taylor.

Increasing evidence of this population’s vulnerability beyond pediatric care has led to implementing specialized adult programs which are dedicated to the improvement of diabetic health outcomes for young adults. Women’s College Hospital is partnering with the Hospital for Sick Kids for the ‘Emerging Type 1 Diabetes Adult Program’ to ensure there is a seamless transition once these young adults leave their respective pediatric programs. The staff for the Women’s College Hospital’s young adult program includes Cheryl Harris-Taylor, Dr. Lorraine Lipscombe, scientist, Women’s College Hospital Research Institute; Dr. Geetha Mukerji, endocrinologist; Leah Drazek, RN; Janis Rusen, RD; and Shelley Thakrar, physiotherapist.

Aside from providing assistance in monitoring medications regularly, these adult programs also serve as a means of support to alleviate emotional consequences, such as anxiety and depression, and also allow participants to interact with others who are in similar situations to them and who may be experiencing the same emotions.

“Many young adults with Type 1 diabetes have had this condition for their entire life and are angry about this diagnosis. They don’t want to deal with the constant management of their diabetes that is crucial to their survival. These programs provide more than just nurses and doctors to monitor their diabetic condition. They have counsellors such as social workers to help them deal with these negative feelings and to move toward acceptance,” Harris-Taylor adds.

Families and friends of these young adults also play a major role in easing the transition from pediatric to adult care. It’s crucial for parents to remain involved by routinely checking how their child is feeling or asking how they can help without being overbearing. Involving friends or roommates of a person with diabetes in their condition can ensure someone else is always checking in.

“Young adults with Type 1 diabetes will feel more comfortable talking about their condition with their parents if there is open and non-judgmental communication.  Roommates and friends can also call once a day to see if they need any assistance or just to make sure they’re feeling okay,” says Harris-Taylor.

Through this community of support including doctors, nurses, dietitians, social workers, family and friends, patients will develop a willingness to learn how to successfully manage their diabetes.

“Understanding and compassion go a long way in helping young adults with Type 1 diabetes develop concrete goals for managing their health. Patients will learn through compassionate interaction how they can improve themselves,” says Harris-Taylor. “Our relationship with them has to stem beyond their medical needs, because patients are more than just their condition. We need to learn who they are, what their interests are and what they need from us if we want to make a real impact on their lives.”

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  • A publication of:
  • Women's College Hospital