I was diagnosed with type 1 diabetes at 14 years old, six months after my younger sister was diagnosed. When I look back at those first few months after my diagnosis, I remember the care I took with following the ‘rules’ of diabetes. I complied with my diabetes management mostly out of immediate and long terms fears of getting low in front of my friends, or becoming blind from poorly managed diabetes. But following the rules and being compliant only lasted for a short time. Soon I stopped testing my blood sugars and eating the mandatory snacks and three years after my diagnosis, I became bulimic. There are a number of reasons for the slacking off in my diabetes care and after reading the fascinating book, “Psychology in Diabetes Care” I see that because of several factors of my background (divorce, financial struggles), I was at high risk for “non-compliance.”
Youths at risk of non-compliance have:
- Limited Resources: Lower socioeconomic levels have been implicated as a risk factor for poor glycemic control and recurrent hospitalizations.
- Single Parent Homes: Single-parent families have been linked to poorer diabetes outcomes in several studies.
Youths with ‘good’ adherence have:
- A more favorable family environment: (i.e. more cohesive and less conflicted) was associated with less deterioration in glycemic control and fewer acute complications of diabetes, such as DKA and severe hypoglycemia.
- Regular Doctor Appointments: Youth with the best glycemic control in the first four years also maintained regular medical follow-ups and had the lowest incidence of retinopathy outcomes
- Younger age at diagnosis: Patients who were school aged at diagnosis (younger than 13 years) had better adherence over a four year follow-up period than did patients who were older (>12 years) at diagnosis.
What Can Be Done for those at risk:
- Health care providers must strive to provide a family-based model of care, recognizing the impact that diabetes has on all members of the family.
- A multidisciplinary team is critical for the appropriate translation of advances such as the DCCT recommendations and for the prevention of problems.
Diabetes is a family disease. I am grateful that for now, all of my three boys are healthy, and that the only one with chronic illness is me. When I look back at my childhood, I believe that the dual diabetes diagnosis for my sister and me added a lot of stress to my parent’s already stressed relationship. I’m glad that I am 40 years old and no longer a teenager because my life with diabetes is much easier to manage. I think more attention and support needs to be given to young people with diabetes and that the medical community should spend more time on the emotional impact of diabetes. Because how many kids do we know who come from single parent households and/or have parents who are struggling to pay the bills? Add diabetes to that environment and you’ve got a heavy load.