Teenagers living with Diabetes

Teenagers living with Diabetes

Dr Clare Williams, Institute of Education, University of London
Through working as a nurse and a health visitor for 20 years I had become very interested in the different ways in which people incorporate conditions and treatments into their lives. When the chance came to study for a PhD, I decided to look at how teenagers with diabetes live with their condition. Being the mother of a teenage girl, I was also interested in the role that parents play in helping their teenagers to become independent. Instead of sending out questionnaires to lots of people, the type of research I chose to do – qualitative research – aimed to explore the experiences of fewer people in much more depth, to find out their perspectives.

Who did I interview?
I interviewed 20 teenagers between the ages of 15-18 years, ten boys and ten girls. I also interviewed whichever parent the teenager said helped them the most with their diabetes management – in all cases this was the mother. I wanted to interview people from as many different settings as possible, so I contacted various hospitals and GPs in my area. I received a good response when I placed letters in ‘Young Balance’ and ‘Balance’ asking for anyone interested to contact me. I also talked about my research to whoever would listen and made some contacts that way.

What did I find?
Did mothers think that teenage girls and boys had different needs?
Mothers of girls were much more likely to talk about their daughters being in control and responsible than the mothers of sons, both generally and in relation to the way they managed diabetes. Daughters and sons were seen by mothers as having different needs, although this wasn’t because sons were seen as sicker than daughters. In fact, the mothers of boys were much more likely to describe their sons as very fit than the mothers of daughters. Instead, boys were seen as less able to care for themselves than girls of the same age and consequently, as more in need of the help of their mothers. I’m going to use some quotes from the people I interviewed to illustrate the various points, but I have changed the names so they can’t be identified. For example Martin’s mother told me:

"Girls always seem more organised I find, and you know, she’ll take the little blood testing kit or whatever for going away, everything is packed and organised whereas Martin will, as we’re going down the road, say "Oh, did you get my insulin?" (son aged 15 years and daughter aged 12 years, both with diabetes).

Did teenage boys and girls manage diabetes in a different way?
Yes, there did appear to be a marked difference in how the majority of teenage boys and girls I interviewed lived with diabetes.

Boys’ management of diabetes
The boys I interviewed were much more likely than the girls to describe diabetes as only having minimal effect on their lives. They were also much more likely to try and keep diabetes and its treatment hidden in public settings, as far as they could. This meant, for example, that they were much less likely than the girls interviewed to give themselves injections at school. Martin’s mother told me:

"He won’t do them (blood sugars) at school now, he absolutely refuses, he won’t even do an injection at school. He is on three injection a day and the hospital would like him to go on to four but he won’t do it in front of his friends, and he doesn’t like the fact that he is diabetic in that respect, he wants to be normal." 

Mothers often helped their sons to ‘hide’ diabetes in public, and this was one of the reasons that mothers felt boys needed more help than girls. Julian’s mother told me:

"His diabetes is managed purely from here (home) – once he goes out of the door as long as he has got some glucose tablets and his lunch in his bag, he’s no different to anyone else, which is good really".

It seemed that the teenage boys interviewed were worried that any signs of ‘illness’ could be seen as a weakness by others. Consequently, boys tended not to talk about diabetes with friends and often chose not to tell teachers about it, which meant that their mothers sometimes had to do this for them. For example, mothers told me that if they were worried about their son they might ring up the school, but this wouldn’t be discussed with their sons. A lot of the help that mothers gave their sons tended to be ‘invisible’, in that the boys didn’t seem to realise that things were being done on their behalf. In fact, many mothers felt guilty for giving the help they did, as they often felt under pressure from health professionals to encourage their sons to be independent. This is similar to research findings on adults, where women tend to be the family members who take care of health in a variety of subtle ways.

The majority of boys I interviewed had good control of their diabetes. They tended to manage diabetes in a fairly ‘rigid’ way, which meant that they felt in control of it and it was ‘no big deal’. However, there was a small minority of young men with serious problems that I only came into contact with through my letter in Balance. I was contacted by their mothers, but the young men themselves refused to be interviewed. The lives of these mothers were severely affected because of their knowledge about their sons’ non-adherence to treatment. Harry’s mother told me:

"He tells people that he’ll be dead soon anyway so it doesn’t matter what he does, and that seems to be his whole attitude really….so I’ve given up now, I might as well not say anything….he just doesn’t want to do it, he doesn’t want to know….I feel like I’m watching him kill himself, and there’s nothing I can do about it, absolutely nothing".

The results of my study indicate that teenage boys are more likely than teenage girls to move between two extremes, with the majority managing very well and a small minority managing very poorly. As mothers are likely to be involved in helping boys manage, they are usually the first person to detect problems arising. However, some mothers reported that when they alerted health professionals, they were made to feel as if they were ‘fussing’ unnecessarily.

Girls’ management of diabetes
It seemed more acceptable for girls to admit that they had diabetes, and girls were much more likely to tell teachers and their friends about it. In many ways the girls I interviewed appeared – superficially at least- to manage diabetes well. For example, they were much more likely to follow the four injections a day regime often recommended by health professionals, which meant performing insulin injections at school. However, there were other factors which affected their overall control which I think may tie in with the BDA Cohort Study findings, which identified young women with diabetes as at a greater risk of premature death than young men.

Firstly, I found that teenage girls had often felt under pressure from health professionals to take responsibility for their diabetes management and mothers had little control over the situation. Susan’s mother said:

"I have never once given her an injection from the age of eight – she has always refused any help, and I used to think that maybe sometimes this was far, far too much for her. It was (from the medical profession), "it’s your diabetes Susan, you’re in control, you’ve got to handle this, and you’ll be responsible", and I mean, she just sort of took this on board and that was the end of it".

Following publication of my letter in Balance I was contacted by a number of young women in their 20s who wanted to talk to me about their experiences as teenagers with diabetes. One of these, Louise, reflected back on when she was first diagnosed as having diabetes at the age of 11 years:

"My mum told me that the hospital stressed very much that my parents, they needed to let me have control –I was old enough to be able to do this myself….so as soon as I came out of hospital it was all down to me…. I showed I could cope in a way on the outside, but on the inside – the emotional side I couldn’t cope with it all, I didn’t really start coping until I left home".

One of the consequences of this was that the mothers of teenage girls seldom had much knowledge about how their daughters managed diabetes, in contrast to the mothers of boys, who tended to be more involved in the day to day management themselves. The level of control girls chose to achieve was very much up to them, whereas most of the boys were advised and supported by their mothers.

Of the ten girls interviewed, four had intentionally had often lengthy, and potentially harmful periods of non-adherence to treatment, of which their mothers, and others, were usually unaware. This could take the form of injecting themselves with less insulin than they needed, or even skipping injections completely. It was hard for the girls to explain why they did this, because they often made themselves feel ill. Whatever the cause, one of the resulting effects was that many of the girls expressed feelings of guilt and shame which were not expressed by boys. Reena told me:

"I do feel guilty quite a lot, because I’m thinking, "I’ve ruined everything". Like, the doctor said I would have been taller but he said it was because I didn’t control it that well I haven’t grown that much".

Two specific aspects of diabetes management which also led to girls expressing feelings of guilt were diet and exercise, and these were also the two main reasons that girls saw themselves as ‘unhealthy’. Teenage girls are generally more concerned about their body shape and weight than boys, and it seems that the emphasis on food and weight in the management of diabetes can bring additional problems for girls. Jemma told me:

"I’m on a diet now because I’ve been eating too much and I want to lose weight. I’m conscious of how much I weigh, and even though I eat, I know I shouldn’t be eating so I feel terribly guilty and go out and eat some more because I feel guilty, and it’s a vicious circle, so I’m not healthy at all".

Similarly, the value of exercise in controlling diabetes could also disadvantage teenage girls, who often participate in little exercise or sport. This in contrast to most of the boys, who usually played a lot of sport and described themselves as very fit.

I have tried here to present some of the key findings from my research, although it has been very difficult to summarise 90,000 words succinctly! I would be really interested in any thoughts you might have about the issues raised. I have also written articles for health professionals, although I know that many read the IDDT newsletter. I can’t finish without saying a very big thank you to everyone who went out of their way to help me with my research.