Some young people cope very well with type one diabetes right from the start and others flounder. Sometimes a young person’s failure to get to grips with the condition has very serious and long lasting effects. So, what things help and what things hinder?
Dr Emily Robinson is a counselling psychologist based in Leicester Royal Infirmary. She interviewed eight type ones aged 28-36 years who had been diagnosed in adolescence and asked them about their experiences. They had been diagnosed between the ages of 11 and 17.
Previous research has shown that how people think about their illness impacts on how well they self-care, their degree of metabolic control and how happy and adjusted they are to diabetes.
Most participants went through a stage of shock and grief around the time of diagnosis. Laura stated, “At first I thought my world had caved in. I was thinking, why me? It is really unfair. I did kind of feel that my life was over”.
Yet, although in the minority, some young people just sort of “got it” right away. No fuss. No muss. Craig said, “I don’t remember there being a sudden change in the way I was personally. I wasn’t panicking for feeling like my life had ended.”
All participants described that their freedom had been at least temporarily curtailed and that they had missed out on things compared to their friends of the same age. Tony said, “I felt I lost my freedom and my ability to do things at the drop of a hat. I had always been a very active child and I was used to going out in the morning, walking and playing in the fields and not thinking of coming back home till I was hungry.”
There is a stage in adolescence where no one wants to be seen as different from anyone else in their peer group. Karen spoke about how this had serious effects. She stopped giving herself insulin injections and ended up in hospital with diabetic ketoacidosis several times.
Most participants described a sense of intense loneliness at the time of diagnosis. Not knowing any other young diabetics was a problem and sitting in medical waiting rooms along with just grown-ups and elderly did not help. One young woman, Laura, actually had severe depression. She put this down to not getting the help she needed from her parents.
Indeed parental involvement has been found to be the single most important predictor of positive adolescent outcomes. The less parental involvement and the more responsibility taken by the adolescent the worse the control. The growth of teenage diabetic transition clinics and internet forums may have made a good difference for todays newly diagnosed type ones.
Parental anxiety had a knock on effect on how well adolescents coped emotionally with their diabetes. “My parents were terrified and in denial”, said Laura. The reaction of friends had lesser but significant impact too.
Health care professionals need to be really careful about how they speak about diabetes to the newly diagnosed because everything they say is taken to heart. Jannine spoke of being shown pictures of gangrenous feet and being in a ward of people who had diabetic complications. The “shock treatment approach” left her so frightening and helpless that she avoided checking her blood sugars. “I have never quite forgiven them for that”, she says, over a decade later.
The way in which diabetes was explained at diagnosis has been found to be the strongest predictor of emotional response even two years after diagnosis.
Laura remembers, “I was having a really terrible time and I said something like, if this was a war, I would be surrendering. At the moment I feel that I am really losing. The doctor said to me, I bet you would just like a couple of weeks off, wouldn’t you? And that was one of the most understanding things a doctor has ever, ever, ever said to me.
Seeing the same clinician regularly was very important to about half of the participants. Having a nurse educate her in a supportive and encouraging way, being given choices, setting her own treatment goals and reducing her sense of isolation were particularly important to Jannine.
Over time, everyone with diabetes adjusted to having the condition in a much more positive way. Tony said, “I see myself as being normal. I’m me. I have diabetes but I don’t consider it to be a huge problem. I didn’t think like this when I was 16 or 20 years old.”
Support groups were a help to some participants. “It was astonishing to know that everyone else had problems too”.
Currently transition services for young people still tend to result in high dropout rates, poor attendance and sub-optimal control. Psychological input may help some people who are struggling at this time. More frequent appointments, active follow up, and seeing the same clinicians have been found to help.
Between the late 20s and early 30’s has been found a significant time in the lives of type one diabetics. After all, this is when parenthood is most commonly anticipated. A wish to tighten up control in preparation for a life time with diabetes is common. Emily thinks that refresher courses in diabetes management, which don’t currently exist in many areas, would be a good idea at this time.
(Of course, from my point of view, I think that diabetics of all ages would be a lot less demoralised if they were told the best ways to manage their diet and insulin regime.)
So in summary:
Doctor gives an optimistic view of diabetes at diagnosis.
Parents, let your offspring do as much as their friends are doing and usual pursuits as far as possible.
Join family/ adolescent support groups at diagnosis.
Hospital managers provide adolescent clinics at different times from adult/complication clinics.
Outpatient management of insulin initiation avoids admission which can be distressing.
Treat parents as possible patients if they are very distressed. Do they need counselling? Do they need to meet other parents who are more experienced and coping well?
Health care professionals should make an effort to understand the person and the family who has diabetes.
Try to have the same clinicians see the family and patient regularly.
Tailor education to the individual.
Give as much control over to the individual as possible.
Consider psychological input if control is poor or distress is evident.
Provide consolidation courses for the 25-30 age groups.
Doctor gives a catastrophic view of diabetes at diagnosis.
Parents keep their child under a tight rein from diagnosis and inadvertently make child feel that they and their lives are very different now.
Being exposed as a new diabetic to very sick older diabetics at clinics or in wards.
Doctors and nurses not talking to parents on their own to see what they may be struggling with.
Too many cooks.
Courses provided too early in the disease process that don’t seem relevant or where the family/ patient are too stressed to learn usefully.
Resources for young people with type one diabetes:
Resources for health care professionals:
Diabetes Australia Position Statement (2011). A new language for diabetes. http://static.diabetesaustralia.com.au/s/fileassets/diabetes-australia/9864613f-6bc0-4773-9337-751e953777cd.pdf
Based on an article by Dr Emily Robinson in Practical Diabetes Nov/Dec 2015