The first ever UK study to seek the opinions of young people with type 1 diabetes, regarding managing their diabetes care at school, uncovered a number of significant misconceptions about the condition.
The study, 'Young people with type 1 diabetes: the influence of the school environment on self-care' was carried out by clinical psychologist and D Clin Psych researcher Dr Susannah Lewis, working with the University of Leicester School of Psychology (Clinical Psychology Unit) and the University Hospitals of Leicester NHS Trust.
Its aim was to find out from young people with type 1 diabetes how the management of their condition was influenced by school personnel and peers. Five girls and four boys aged 11-16 years were interviewed for the study. They all had type 1 diabetes, attended state secondary school, and were registered with the children's diabetes service in a single centre.
The young people reported that teachers and fellow pupils had a significant influence on their diabetes care and their feelings of efficacy regarding the condition. They felt they were more likely to undertake care at school if they were permitted (and encouraged) by teachers to do so.
However, some young people reported that teachers were often unaware that they had diabetes or misunderstood their care needs, making them feel stigmatised by chastising them for undertaking care in class. Sadly it was often left to friends to act as the young person's advocate and explain their care needs to teachers.
One boy reported: "I took my apple out and started eating while I was working as well, and she (teacher) said, 'put that in the bin and you get a sanction'. And everybody's like, but he's diabetic, oh he's diabetic, and then she was like, oh sorry."
There were also reported incidents where teachers did not recognise when pupils were behaving irrationally due to hypoglycaemia (low blood glucose) and disciplined them for their behaviour, whilst friends recognized the symptoms of hypoglycaemia and offered practical assistance.
As one participant commented: "He (the teacher) should have understood a bit more that I was low and didn't know what I was doing because I was talking complete nonsense, which is a big sign of being low. Well my friends know how to react, but other people in the class will know when I'm low and will tell somebody."
Incidents of young people's lives potentially being put at risk by staff not knowing how to treat hypoglycaemia (and calling in parents to administer treatment) were also reported. One mother said that the school telephoned her to come and treat her child "I said by the time I get there she'll be unconscious".
The young people also experienced degrees of stigma in relation to having diabetes and the associated care, fearing that they may be perceived as unfavourably "different" by peers and be ridiculed. One participant said: "They'll think I'm a druggie or something".
Some chose not to disclose their diagnosis to other pupils or to disclose it only to their close friends. They reported their need to undertake self-care covertly whilst at school (e.g. eating discreetly in class) in order to feel part of the peer group, minimize their feelings of stigma, and allow full participation in lessons and school activities. Others concealed care during lessons, fearing embarrassment if teachers questioned their behaviour in front of other pupils.
Dr Lewis commented: "Previous studies have examined the role of parents in diabetes self-care, and found that parental influence decreases during adolescence. As friendships and school life become more important during adolescence, examining the influence of school personnel and peers was pertinent. There were few studies examining this area, so possible outcomes were unknown".
"The impact of teachers on young people with diabetes cannot be overestimated, given that poorer self-care increases the risk of complications including unconsciousness, seizures and coma, as well as serious long term problems such as blindness and kidney failure.
"Diabetes is a legally recognised disability. All young people with the condition have the right to appropriate school care to help them fully take part in school life. Young people with diabetes must be allowed to undertake care at any time at school. Schools need to make all staff aware of pupils with diabetes and their related care needs, and staff must be trained in recognising and treating hypoglycaemia."
"Providing all pupils with diabetes with a school "pass" permitting them to eat/drink discreetly in class and attend the toilet during lessons would help promote care, and allow young people to control the disclosure of their condition and reduce feelings of stigma.