Injection of hope

Diabetes is on the increase among young people. Jessica Datta
reports on a study of how the condition affects the lives of
teenagers.

Diabetes is the third most common chronic condition in children
after asthma and cerebral palsy¹ with at least 20,000
children and young people in the UK suffering with it.

The large majority of children and young people with diabetes
have type 1, which nearly always occurs in childhood, adolescence
or young adulthood. Incidence of type 1 is increasing but
epidemiological studies have not been able to explain exactly why.
A small but growing number of adolescents have developed type 2
diabetes which is usually associated with people over 40 and with
obesity and a sedentary lifestyle.

Concern has been expressed about the ability of young people
with diabetes to maintain both good health and quality of life, and
about their psychological functioning. Research has shown that
diabetic emergencies are more common in adolescence, and it is in
adolescence too that medical complications associated with diabetes
may emerge.

But despite this negative picture, recent research by the
National Children’s Bureau, supported by the Community Fund,
suggests that having diabetes is not a big problem for most
teenagers. More than 70 per cent of the 158 young people aged
between 10 and 24 who participated in the study reported that their
quality of life was “brilliant” or “good” and only 5 per cent
thought that their lives were “not OK” or “bad”. More than a third
felt that having diabetes made no difference to the quality of
their lives. A fifth thought having diabetes made life “a fair bit
worse” or “a lot worse” while four people thought having diabetes
actually made their lives better. The research explored health
services and, in particular, arrangements for transfer from
paediatric to adult care for young people with diabetes. Young
people and health care staff in six areas of the UK were
interviewed for the study. Young people talked about living with
diabetes at home, at school and at college and how they felt about
their health care.

Like most young people, participants were more interested in
their social networks and activities, school, college or work, and
family life than they were with concerns about their health. For
those who had had diabetes since they were small children, living
with the condition was what they were used to but, for some of
those who were diagnosed in adolescence, it was more difficult to
adjust routines to accommodate balancing food intake with injecting
insulin.

In order to replace the insulin that the pancreas stops
producing when diabetes develops, these young people have to inject
themselves with insulin two or four times a day. The main aim of
diabetes management is to maintain blood glucose levels that are as
near as possible those of someone without diabetes. This is done by
balancing insulin dose with food intake and exercise and can be far
from simple, particularly during adolescence when puberty and
growth may mean make optimal control difficult to achieve. In order
to manage this balance, people with diabetes should measure blood
glucose levels at least daily and ideally more often. Blood is
taken by pricking a finger and the level monitored with a blood
glucose meter.

Family support
A supportive family is probably the most important factor
in ensuring that a young person with diabetes stays well. Parents
offer practical support by providing healthy meals, picking up
insulin supplies and accompanying their children to clinic
appointments. Although some young people reported that their
parents nagged them about diabetes and were sometimes
over-protective, all respondents appreciated the care they got from
families and some admitted they liked the extra attention they
received because of having diabetes. One paediatrician who was
interviewed for the study believed that the majority of patients
who have poor control “come from families which are disrupted or
disorganised. If you have a patient who has a problem with
attending clinic regularly or generally has poor overall control,
it often reflects the family situation”.

Young people who do not have good day to day support from their
family – and this could include those who have recently left home –
may find it more difficult to manage diabetes successfully.
Changing routines and new activities, such as drinking alcohol and
staying up late, or the stress of exams, may affect blood glucose
levels. It is important therefore that young people continue to
consult with their health care team to ensure that their treatment
fits best with their current lifestyle.

Health services
Health services for this group of young people should be
accessible and acceptable to them. This means that clinics should
be run at times when young people can attend and that staff should
treat young people sympathetically, not bully or threaten them if
blood glucose control is less than optimal.

Findings from the study show that hospital staff, and
particularly diabetes specialist nurses, are popular with young
people. Nurses’ practical advice and informal style was
described as helpful and supportive and the continuity of care they
provided was much appreciated. Some nurses were prepared to be
flexible about when and where they saw young people, often making
home visits. Over a fifth of young people reported that a nurse had
visited their school in order to advise school staff about caring
for a young person with diabetes either following diagnosis of
diabetes or before a school trip.

Young people with diabetes are a diverse group living in varying
circumstances and with various needs. However, unlike their peers
at school and college, they are all in the process of taking on the
responsibilities of managing diabetes as they grow to adulthood.
This means handling the daily interactions of eating, taking
insulin and exercising while also coping with the new demands of
emerging independence.

Like their friends, these young people will be forging their
identities, forming new relationships and perhaps experimenting
with alcohol and drugs but they also face changes in their diabetes
care and, possibly, discrimination at school or work.

They need understanding and support from their families,
friends, staff at school and college and from health care
professionals.

¹ Audit Commission,
Testing times: A Review of Diabetes Services in England and
Wales. Audit Commission, 2000

Jessica Datta is senior research officer at the National
Children’s Bureau.

What young people say about having diabetes

“My diabetes doesn’t affect me in any way or stop me doing
things. All my friends are aware of my condition and have no
problems. I don’t think it has affected my life a lot –
simply made me more responsible.” (17 year old girl)

“When I first had diabetes, I felt like an outcast but now I
accept it and most people, apart from some teachers, don’t
treat me different. Diabetes can even get me out of things like PE
and housework!” (16 year old girl)

“I am very negative about it… I feel it has to be one of the
worst things that has happened to me in my whole life.” (15 year
old girl)

“As I’ve got older I’ve learned to accept being
diabetic and I learned being different isn’t that horrible
after all. Now I know doing blood tests and taking insulin is just
part of my everyday routine. Diabetes is something that I’ve
learned I’ve got to live with.” (16 year old girl)

“I don’t like being diabetic but I haven’t got much
choice. It affects my life sometimes but most of the time I’m
fine.” (15 year old boy)

“When I got diabetes it was a shock but I have fitted it in
around all the sport I do and all the food I eat.” (16 year old
boy)