Research Profile - Parental guidance required

Parents of adolescents with diabetes often struggle with the transition from playing a major role in managing their child's chronic condition to watching from backstage.

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Almost every parent goes through it. Their child, who once shared every detail of their daily life, turns secretive sometime around age 13 and stays that way until they graduate university. They balk at any perceived intrusions into their newly claimed independence.

Just as all teenagers naturally demand more control over their lives, those with diabetes want to take control of their chronic condition. The trouble is, adolescence is when risk-taking and acting irresponsibly are almost a rite of passage.

For a parent of a child with type 1 diabetes, watching a son or daughter go through adolescent angst and rebelliousness sets off a whole other set of alarms.

Are they monitoring their blood sugar levels regularly? Are they eating right? Are they taking their insulin when they need it? Are they consuming alcohol – and what will that mean to their diabetes?

These parents often have nowhere to turn for advice and support.

"People, including health care professionals, will tell parents, 'Oh well, it's just a really hard time and they'll get over it,'" says Dr. Barbara Paterson of Thompson Rivers University in Kamloops, British Columbia. "But parents have to watch their children do things that may threaten their lives because the teenager often doesn't understand the long-term consequences of their actions."

Funded by the Canadian Institutes of Health Research (CIHR), Dr. Paterson leads a team that is producing an online support resource for parents of teenagers who have diabetes.

"The more we got into the project, the more we heard from parents about how they felt quite alone," says Dr. Paterson.

A 2008 pilot study, published last year in the Journal of Nursing and Health Care in Chronic Illness, found that parents are often at a loss for how to handle the transition from being a major player in managing their child's condition to standing back and letting the adolescent take care of it by themselves. Along with the potential health risks, anxiety over the situation can produce turmoil between the parents themselves and between the parents and the child.

Parents told the researchers that while the need for social support is very real, few have the time or resources to organize support groups and meet regularly to share stories and exchange information. And when they want help, they want it immediately, according to Dr. Paterson.

"We did focus groups with about 60 parents and health care professionals in Edmonton, Fredericton and Saskatoon, and what we learned is that people want something that's readily available, 24 hours a day. They want to be able to join in a discussion through chat rooms or just read the discussions. They'd like to be able to connect with a health care worker if they need it – someone they could ask questions of. They want to see videos of young adults who have gone through this experience telling parents about what they found helpful and what they found unhelpful."

Paterson's team built a prototype online intervention based on the parents' suggestions and health care providers' input that has been tested with approximately 45 parents. After evaluations are completed over the winter, the plan is for Stollery Children's Hospital in Edmonton to host the resource on their website.

"We will provide links to the Canadian Diabetes Association and the Juvenile Diabetes Research Foundation and their chapters across Canada so people can go in and link to it," says Dr. Paterson. "You don't have to be a patient at Stollery – it will be accessible worldwide."

The hope is that the online intervention will help parents step back gracefully as their children assume more active responsibility for managing their diabetes.

"Some of the parents told us that they have friends in a similar situation that they could call," says Dr. Paterson. "But the reason why online is so attractive is because, at the end of the day, anyone can go to their computer and access that support."

What works, what doesn't

Dr. Lorraine Holtslander, an Associate Professor at the University of Saskatchewan in Saskatoon, is a co-investigator with Dr. Paterson on the CIHR-funded project to create an online intervention for parents of adolescents with diabetes. She is also the mother of a daughter, now 20, who has type 1 diabetes.

"It's a delicate kind of balancing act," says Dr. Holtslander. "Sometimes you're there to pick up the pieces. On the other hand, you're just learning to let go and let them do it on their own. "

Her daughter was diagnosed with diabetes at age 10.

"It's so much a part of your life. You're thinking about blood sugar levels. You're thinking about meals. You're thinking about what she needs to do at the same time as thinking about whatever you are doing. It's always at the back of your mind. You have to somehow retrain yourself, almost, to not worry about it and let her make mistakes sometimes and be independent. Because that's what's going to give her confidence. You have to do that for her sake."

What doesn't work?

"Making the person with diabetes feel bad about their diabetes, making them feel guilty," says Dr. Holtslander.

"Sometimes you almost force them to be too independent or try things because you're too strict. If you're too strict and too overbearing, the person might be likely to try things in rebellion. That can really get them into trouble."

"In our focus group we had a dickens of a time getting the parents to answer our questions because they wanted to share stories with each other. We learned very quickly to allow an hour for them just to share their stories before we asked our questions."
-- Dr. Barbara Paterson