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Children as partners in their diabetes care
Can children understand and share in managing their daily diabetes
care? This small study with 24 children aged 3 to 12 years found that
they can be highly involved. During interviews, the children and their
parents talked about their everyday lives, their views on daily blood
tests and insulin injections, food, doctors and nurses, the time when
their diabetes was diagnosed, information and support, and how
children ‘just want to get on with their lives’.
The study found that:
• Some young children understand a great deal about daily diabetes care,
the low-sugar diet, how to take and assess blood tests and inject insulin,
and how to explain diabetes to other people. Some become very adept
early on, others prefer their mothers to manage most of the care. From
the start, they need clear positive explanations about the daily routines,
and why these are helpful; otherwise the diabetes care can seem cruel
and pointless.
• Besides having knowledge and skill, young children can be competent at
making choices, managing difference, and being ‘normal’. Their main
goals tend to be ‘just to get on with life’ and to have fun with their friends.
They need routines that fit smoothly into their everyday life and goals.
• The 24 children and 29 parents we spoke with learn most about diabetes
through personal experience, including children’s own bodily sensations,
and the trial and error of finding out what works best. They tend to feel that
they have too much information at first, and too little information later on.
• The small sample reported high levels of satisfaction with the care from
the specialist diabetes staff. Yet care from non-specialist practitioners
posed very serious problems for most of the children, and school staff
varied in how helpful they were.
• Children and parents offer a wealth of information gained through their
personal experiences. These could help practitioners and policy makers
to raise standards of diabetes health care, working as partners with
children and parents.
SSRU - Social Science Research Unit, Institute of Education, University of London,
www.ioe.ac.uk/ssru/ April 2004