Diagnosis

When a child or adult is diagnosed with type 1 diabetes, everything changes, for the person with diabetes and also for their family. As a health professional, when you meet your patient and their family for the first time, what you say and how you say it is crucial because it will be remembered, down to the finest detail. Your responsibility is to present the truth, to be strong, to be a sounding board and to pre empt questions and fears, at their pace, not at yours.

Below are some memories about diagnosis. Many interviewees recalled key events often several years after their diabetes diagnosis. Some key themes emerged.

The Burden of Guilt

Parents may take years (if ever) to stop wondering if there was anything they did, or didn't do, to cause their child's diabetes. This should be nipped in the bud and discussed at follow up consultations, offering psychological support if necessary. Carrying this burden can cause damage. The child may blame themselves for causing this painful experience to their parents and may try to hide their own feelings as a result. This may interfere with the adjustment process necessary for coming to terms with the diabetes diagnosis.

Fear and Sadness

Unknown artist, supplied by Prof Tim Dornan (Maastricht University, The Netherlands). First published Diabetologia Vol 49, 2006.
Unknown artist, supplied by Prof Tim Dornan (Maastricht University, The Netherlands). First published Diabetologia Vol 49, 2006.
Diabetes professionals tend not to discuss long term implications of diabetes at diagnosis, other than being very upbeat about it. The patient and their parent will usually be considering the future even if we do not raise the subject. I like Professor Johnny Ludvigsson's approach, who told me that he always insists on speaking to the whole family together at diagnosis, to reiterate the magnitude of a diabetes diagnosis. He tells the patient that they can live a very happy, successful and fulfilling life with diabetes, but it will not be the same life as if they didn't have diabetes. The truth is very important, particularly if you are to maintain a long and good relationship with your patient.

Confusion

Many parents read up on the internet about diabetes and it is uncommon for a patient or parent to admit this to the diabetes professional. Assuming this will allow you to squash some of the myths and preconceptions they are likely to have read up about. One common misunderstanding is the difference between type 1 and type 2 diabetes, with the knock-on confusion over cause (is it because he ate too much sugar?) , management (can't he be managed with tablets like my aunt?) and long term complications (he'll go blind, won't he?).

Stress

 “Ill?  For ever? Does it hurt? Will I die? My fault? Why just me?”  Cover picture by Jonas, drawn when he was 13 years old. Picture and text supplied by Johnny Ludvigsson, Professor of Pediatrics, Linköping University, Sweden.
“Ill? For ever? Does it hurt? Will I die? My fault? Why just me?” Cover picture by Jonas, drawn when he was 13 years old. Picture and text supplied by Johnny Ludvigsson, Professor of Pediatrics, Linköping University, Sweden.
The ongoing debate about whether a child should be managed initially in or out of hospital is unresolved. That is probably because there is no right answer. Many parents will feel reassured to be in hospital whilst learning about diabetes and getting used to the blood tests, injections, carbohydrate counting and fear of the first hypoglycaemia. Yet being surrounded by patients with acute illnesses seems inapproriate. On the other hand, even for well children, arriving home very soon after diagnosis with a diabetes starter pack can feel overwhelming. A box of specialist medical equipment is on the kitchen table. There's a new and a back up blood glucose meter, glucagon, glucogel, finger prickers, insulin pens (different colours - which was for which?), information leaflets, ketone strips (how high should you be til you check?). Both situations can cause huge stress. Different countries have different approaches to diagnosis. This should be individualised for the patient, depending on their presentation, educational level, family support, coping mechanism and family preference.

For further discussion about Pyschological care for children and adolescents with diabetes, please see ISPAD clinical consensus guidelines [1].

Pernilla Strandberg, 18, diagnosed with diabetes just before she turned 6 years of age

Picture supplied by Dr Ragnar Hanas, Department of Pediatrics, Uddevalla Hospital, Uddevalla, Sweden. First pubslished Diabetologia Vol 49, 2006.
Picture supplied by Dr Ragnar Hanas, Department of Pediatrics, Uddevalla Hospital, Uddevalla, Sweden. First pubslished Diabetologia Vol 49, 2006.
When I was 13 (at the time when I made the drawing) a lot of thoughts were taking place in my head. I was tired of taking injections, found them boring, and was sorry knowing that I would always have to take them. But I also knew this was saving my life. At the same time as I hated the injection (and my diabetes), I loved it. The evil syringe that only wanted to do me good. And in the drawing you can see a girl that is angry and mad with this syringe. But no matter how mad she is, the syringe is just as happy, because it only wants to help. And by drawing such a picture where you can see that the syringe is a kind and happy friend rather than an enemy, people with diabetes and especially children may change their view about it, realizing that it is not all that bad.

Juliet, 22, diagnosed aged 17 years

I was diagnosed just as I was going into upper sixth, the time when we had to decide what Unis we wanted to go to. At first I remember crying to Mum because I was scared about coping with my diabetes on my own. In the hospital I was given a book to read. It kept saying that you couldn’t do this and you couldn’t do that. I was really scared. My consultant said her daughter went to college and stayed out late – ‘but you won’t be doing that’; that she drank alcohol in the college bar ‘but you won’t be doing that’. I was about to go off to college and I thought that I wouldn’t be able to do any of those things, that my life was ruined. Now I see her in clinic. She sits behind her desk. I think, ‘You have no idea’.

Taken from Diabetes Through the Looking Glass by Dr Rachel Besser (Class Publishing)[2].

A parent remembers

I remember when Lizzie was diagnosed (aged 9 years, 30 years ago) as if it were yesterday. I asked myself, What have I done wrong? As a parent, you want your children to be perfect and have a perfect life. I felt as if I’d let her down and had given her an extra burden to carry throughout her life. From the beginning we knew we had to help her do as much as she could for herself. Now I know that diabetes is just something that happened and that it was not my fault and I see how wonderfully she has coped. I had to hang in there and hang onto myself, as I wouldn’t have been able to help her if I’d shown her how I felt. You get used to your fears and worries and they get easier. You learn that diabetes is a manageable condition and nothing need stand in the way.

Taken from Diabetes Through the Looking Glass by Dr Rachel Besser (Class Publishing).

References

  1. ^ Delamater AM Pediatric Diabetes 2009(Suppl 12);10:175-184.

  2. ^ Besser R. Diabetes Through the Looking Glass. Class Publishing, 2009, ISBN: 9781859592090

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