Alderson, Priscilla

Curtis, Katherine

Sutcliffe, Katy

Tyler, Katherine

English

Institute of Education EPrints

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 
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 
friend once found a box of chocolates 
and wanted Emma to share them. Emma 
refused, as her blood test proved. When 
she was 5, she arranged with her mother 
that at parties she could do a blood test 
and then decide how many sweet things 
she could eat. Perhaps more 
complicated than calculating what to eat, 
is the children’s competence in 
managing to be different from her friends 
but still to be accepted fully by them.  
  
Needles 
 DJ was 6, and Nicola 4 when they did 
their own blood tests and injections, 
though like other children Nicola 
preferred her mother to do injections 
sometimes.  
  Children vary in what they feel able and 
willing to do. Alex had needle phobia and 
at age 11 found injections very hard, as 
did one of the mothers. When James 
was diagnosed at age 7, he could do his 
injections before his mother felt able to. 
When William was aged 7, he was 
pleased that a young friend, who also 
had diabetes, showed him how to start 
doing injections.        
 
Food and insulin 
Food and activity choices constantly 
revolve around trying to balance blood 
sugar levels between too low and too 
high.  Jo aged 7 and her mother chose 
food together for her packed lunch each 
day. Mr Football aged 9 was expert on 
calories in types of foods. Children 
checked calorie details on food or drink 
packets, and worked out their current 
blood sugar level against how much 
energy they might need for the next few 
hours. Johnny managed an insulin pump 
and like Jimbo, also aged 11, adjusted 
his insulin doses to fit his needs.  
   
Understanding 
If they went to visit friends, some 
children did their routines and also 
explained these. David aged 11 said 
succinctly: It’s an illness and an organ in 
your body isn’t working, and it’s stopped 
producing this liquid, and you need this 
liquid to turn sugar into energy, and this 
liquid is insulin, and so you have to have 
injections of it. And you can’t have so 
much sugar in your food. 
 
Moral insight 
Jessie aged 6 showed the children’s 
responsible moral understanding when 
saying ‘I’m sure’.   
Interviewer:  This is my little girl. 
She’s just got diabetes…Can you 
tell us what we need to do? 
Jessie  … When she’s feeling low 
you must always give her some 
sweets, and when she’s feeling 
high you must always, always not 
give her sweets… 
Int:  And how would I know if she’s 
high or low? 
Jessie:  She’ll tell you, I’m sure. 
Int:  Is there anything else I need to 
do…? 
Jessie:  Yes, you need to do your 
blood sugar [she explains how to 
do so] and then you have to see 
how high or low you are so you 
can have some treats or not. So 
that’s how you do it. 
 
Other findings 
This short report is mainly about the 
children’s skill and understanding. Yet 
they also described good care from 
specialists and dangerously inadequate 
care from non-specialist practitioners. 
They talked about the first days when 
they found they had diabetes and they 
raised questions about whether hospital 
or home was the best place for them to 
be then, if they were well enough to go 
home. Even it they played a very active 
part in their care, children did not 
necessarily want to talk much in the 
clinics. They described how teachers 
could be very helpful or very unhelpful.  
Most of all, the children emphasised how 
they wanted to be normal and to get on 
with their lives. They needed devices 
and routines at home, nursery and 
school, to help them to do so.  
Early conclusions 
We aimed to find out if young children 
can share in their diabetes care and talk 
to us about it. Their ability to take part in 
the research demonstrates their ability to 
understand and take part in managing 
their diabetes care. They gave clear 
evidence of their competence, and some 
parents mentioned their surprise that 
their children were so able. 
 
Yet although some children can be 
highly responsible, this does not mean 
they all either can be or want to be. Each 
child may vary, sometimes wanting more 
help, sometimes less, without following a 
single pattern of growing independence. 
And they might, for example, be expert 
with needles or about calories, but not 
want to talk much with their doctor.  
 
Having found that it is very worthwhile 
talking with younger children, we plan to 
do a more thorough project with those 
aged 3 – 8 years. We will allow more 
time for participative research methods, 
such as asking them to take photos and 
draw maps, or to use toys to explain 
their points as Jessie was doing when 
she was quoted earlier.  
 
We also aim to allow time to explore 
children’s differing, sometimes 
ambivalent views, and we will avoid 
offering hasty conclusions at this stage.  
 
Children and parents raised serious 
questions for future research with larger 
samples:  
*  Are there better ways to inform them, 
offer them choices, support them after 
diagnosis and over the following years?  
*  How can GPs, A&E and general 
children’s ward staff improve their care?  
*  How can school and nursery staff 
become more aware and respectful of 
the children’s expertise? 
*  How can willing positive partnerships 
between younger children and adults be 
encouraged and problems be 
prevented? 
   
 
Children as partners in their diabetes 
care: an exploratory research study  
September - December 2003 
 
Thank you to  
All the boys and girls and their parents 
who kindly took part in interviews,  
to Dr Charles Buchanan, Dr Abdus 
Mallik and Dr Jeremy Allgrove, and the 
diabetes nurses Patricia Gillard and  
Julie Richardson, and to the 3 R+D and 
3 ethics committees for approving the 
project.    
 
Researchers   
Katy Sutcliffe MSc Research Officer 
Priscilla Alderson PhD Professor 
SSRU - Social Science Research Unit 
Institute of Education  
University of London 
18 Woburn Square  
London WC1H ONR 
Katherine Curtis MSc Research Fellow 
Child Health Research and Policy Centre  
Institute of Health City University  
 
Funding:  
SSRU Childhood Research Fund 
 
Reports   
For a free e-copy of the 90 page report 
email  ssru@ioe.ac.uk 
For printed copies send your order with 
£10 (free printed copies to interviewees). 
There is also a 4 page report for 
children. 
 
SSRU 
Founded in 1990, SSRU conducts 
research on users’ views about health, 
education and welfare services.  
SSRU’s Childhood Research and Policy 
Centre runs an international information 
network, courses and meetings, and an 
MA in understanding and working for 
children’s rights.    
 
 
 


Children as partners in their diabetes care: An exploratory research study, September - December 2003

http://eprints.ioe.ac.uk/5348/1/Sutcliffe2004Childrenaspartnersreport.pdf

Children as partners in their diabetes care: An exploratory research study, September - December 2003

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