Adolescents' Views on Diabetes Report launched

Teens with Diabetes demand recognition and a better service

• Teens feel ignored and want to be involved in the decision making process on managing their condition.
• Responsibility for diabetes self-management should not be age related but dependant on one’s ability to monitor their diabetes control.
• Seeing a different doctor for each visit results in repetition and wastage of professional time and contributes to a lack of trust by the teenager.
• Parental attempts to control their teenager’s diabetes can reflect a lack of trust.
• Teachers and coaches should have a reasonable knowledge of diabetes and its management and should not rely solely on the teenager for information.
• Media need to differentiate between Type 1 and Type 2 diabetes

A report informing diabetes healthcare professionals how to effectively organise clinics to optimise their service to teens with Type 1 diabetes was launched today.

Launched by the Diabetes Federation of Ireland, the report highlighted concerns raised by teenagers at a recent conference. The conference covered a range of issues and provided an opportunity for teenagers to voice their views on managing their condition.

A major finding was that teenagers felt they were ignored and want to be joint decision makers with their parents and diabetes teams on managing their condition. They stressed that doctors should remember that when parents are part of the consultation, teenagers should still be included in the decision making process.

They also stressed that the time at which a teenager assumed responsibility for his/her diabetes self-management should not be age related but dependant on an individual’s ability to self-administrate insulin and self-monitor their diabetes control.

A range of practical suggestions aimed at enhancing relationships with the diabetes team were made. These included:

hospital appointments e.g. with the doctor, nurse, dietitian etc. should be on the same day as teenagers do not want to miss school. Out of hours clinics were not seen as a viable option because of the teens involvement in extra curricular activities which cannot be missed without repercussions.
transition clinics should be set up between paediatric and adult diabetes services where the teenager will retain the support of the diabetes team they know while they get to know the “adult” diabetes team.
the practice of seeing a different doctor for each visit results in repetition and wastage of professional time while contributing to a lack of trust in the healthcare system by the teenager.
teenagers do not welcome sharing the waiting area with younger children and feel they should have designated areas where they could meet their peers on clinic day.
the environment of clinics would be enhanced by more appropriate décor and whereas this would not improve the clinic visits, the gesture of improving décor would be much appreciated.

Author of the report Ms Anna Clarke, Health Promotion and Research Manager of the Federation said “for too long we have always done what we think is best for teenagers with type 1 diabetes. Through this initiative we gave them an opportunity to voice their opinions. Their suggestions to enhance current services are not difficult to implement and I would encourage clinic teams to look at addressing the issues raised to enhance the teenagers’ interaction with the service”.

Parents, teachers and sports coaches did not escape either. Parental attempts to control their teenager’s diabetes can reflect a lack of trust. Teenagers are aware that trust can only be assumed gradually and that the trust is not just diabetes related. However, teenagers whose diabetes is not controlled welcomed support from parents and siblings.

Adults, especially those in a professional capacity, who know they will be in the company of young people with diabetes should have a reasonable knowledge of diabetes and its’ management and should not rely solely on the teenager for information. The need for this is especially apparent among teachers and coaches and information on diabetes is widely available.

It was felt there needs to be increased focus on differentiating between type 1 and type 2 diabetes so that teenagers are not discriminated against due to lack of understanding of the difference between poor lifestyle habits contributing to the development of type 2 diabetes and the dietary and physical activity goals outlined in the management of type 1 diabetes. The media should also take the time to get their facts right in this regard.

Karen Woods, a teen who attended the conference said “I thought the conference was great. What I found was that the issues I faced daily in Cork were also being faced by teenagers in other parts of the country. I hope my diabetes team act on the issues raised and I look forward to seeing the recommendations implemented”.

The report itself is a summary of the various discussions that took place at the conference and provide a very interesting insight to the minds of teenagers with Type 1 diabetes.

Download Teen Conference Report here

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APP KOL/AC 30-06-2009