Background
There is growing concern in Britain about
the rising rates of diabetes, the high
personal costs to the 1.3 million people
affected, the great expense of treating
diabetes and its complications, and the
shortage of specialist diabetes
practitioners. Type II diabetes mainly
affects adults. Type I diabetes starts in
childhood and can affect slim fit children
with a healthy life style. Unless new
treatments are found, they will need to
have daily insulin injections all their life.
Rates of type I diabetes are rising
among young children. Yet very little
research has been conducted with them
about their knowledge, views and
experiences - the topics of this research.
The government aims to empower
patients and promote partnership
between patients and practitioners. We
looked at the ages when partnership can
begin.
Aims
* To find out about the views of children
aged 3 -12 years on living with diabetes,
and sharing their health care in
partnerships with adults.
* To explore how much they can share
in managing their diabetes care.
* To involve as highly varied a sample
as possible, in terms of the ethnicity,
socio-economic background, age of the
children, and their experience of
diabetes.
* To take account of extra difficulties
children and parents may meet with at
home or school or in their community.
* To provide reports on children’s views
and experiences for children with
diabetes, their parents and carers, health
care professionals, policy makers and
researchers.
* To learn from and help to promote
positive ways of supporting and involving
younger children in their diabetes care.
Methods
* We met the children through three
hospitals: two in London, one in the
outer suburbs. With two groups we
chose a purposive (deliberately wide-
ranging) sample, and sent them opt-in
requests, inviting them to join the project.
Families that replied were mainly white
and middle class and we met most of
them at their home. The third and more
diverse group was contacted and
interviewed in a diabetes clinic.
* We piloted the interviews. These
began by asking about the children’s
everyday life, their friends, and things
they enjoy doing. We asked open
questions to encourage them to tell the
story of their life and about diabetes.
Some children played a game and 11 did
a drawing. They all chose a research
name. We also observed the three
clinics and interviewed two doctors and
two nurses. We transcribed the tapes,
and analysed them for replies to our
questions and for themes raised by the
children.
New areas of research
This project is unusual in exploring four
fairly new areas of research:
* The views of children aged from 3
years onwards;
* Positive ways in which children can
share in managing their care;
* Social problems that arise in everyday
life, rather than personal problems within
the children themselves or their families;
* Methods of listening to children’s own
accounts, rather than using tests, or
questionnaires, or solely adults’ replies.
Early competence
Decisions
Emma gave early examples of making
sensible decisions. When aged 4 she
knew she could have a little cake at
parties, but the nursery staff often forgot.
Emma would wait to ask her mother later
to remind the staff for next time. Her