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Children as young as 4 years of age with type 1 diabetes showed understanding and competence in managing their condition
  1. Kathryn Rousseau, RN, MScN
  1. School of Health Sciences, St Clair College
 Windsor, Ontario, Canada

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 Q When do children begin to be willing and able to take an informed share in managing their diabetes care? Is it wise or kind to listen to young children and to respect their rights and goals?

    DESIGN

    Qualitative study.

    SETTING

    Clinics in 2 London hospitals and in a commuter town in the UK.

    PARTICIPANTS

    A purposive sample of 15 children 3–6 and 10–12 years of age and a convenience sample of 9 children 6–11 years of age, all of whom had type 1 diabetes (age at diagnosis ranged from 1 to 10 y).

    METHODS

    Children participated in tape recorded, semistructured interviews; most were accompanied by a parent. Children were asked about their everyday lives, when they first had diabetes, understanding and managing diabetes, visiting the clinic, future ambitions, and how they would advise a newly diagnosed child. Interview transcripts were systematically read and analysed for themes.

    MAIN FINDINGS

    Understanding diabetes. 15 children were diagnosed between 15 months and 5 years of age. Some were very ill and so experienced the life threatening nature of the condition. A 7 year old girl diagnosed at age 5 noted “My sister was at home in bed and she was crying because she thought I was dead.” Based on these memories, some children had an “intense embodied understanding” of diabetes; they understood hypoglycaemia through bodily experiences (eg, feeling “wobbly”).

    Needles. Ability and willingness to use needles were not age related: some 4 year olds did their own blood tests and injections, whereas some 11 year olds wanted their mothers to do their injections. Several children said that it hurt less when they injected themselves. Some provided detailed explanations of their routines: “…you put your blood on the little strip…If it’s something like 4.6 it’s quite normal. If it’s something like 3.2, you need to eat something…”

    Managing diet and insulin. Children as young as 4 years of age knew that “insulin is the key that turns sugar into energy” and that they needed low sugar diets; they also discussed higher and lower carbohydrate counts with their parents. A 9 year old boy memorised the carbohydrate counts for many foods, whereas others checked carbohydrate details on food or drink packaging and calculated their current blood sugar concentrations against energy needs for the next few hours. At 4 years of age, one child refused to eat chocolates offered to her by a friend. This same child, at 5 years of age, arranged with her mother to do blood tests at parties and then decide how many sweet things she could eat.

    Goals. Children spoke about 2 main goals: to “just get on with life” and to be “normal.” They resented “boring” aspects of care that interrupted enjoyable activities and spoke of the inconvenience, rather than the pain, of the condition. Some children noted the negative attitudes of others that created problems (eg, teachers who refused to take them on school outings).

    CONCLUSION

    Children as young as 4 years of age who had type 1 diabetes demonstrated understanding of the principles of managing their condition and the ability to make reasonable decisions in their own best interests.

    Commentary

    The qualitative study by Alderson et al examines the experiences of children with diabetes. The study is unique because it investigates the experiences of children 3–12 years of age. Some of the themes emerging from this study were similar to those found in studies of older participants, particularly related to the embodied experience of diabetes and the expressed need to fit in and be “normal.”1,2

    The authors acknowledge that the study was limited by its small sample size. It was a purposive sample that was “deliberately diverse,” but no information was provided on this diversity, other than on age, sex, and age at diagnosis. It would have been helpful to have details of the types of professional support received and familial structures (eg, siblings with diabetes). Despite the omission of such details, the findings are meaningful and can influence the way in which nurses interact with children with diabetes.

    The idea of forming collaborative partnerships with clients is common with adults but has not been widely discussed in relation to children. More consideration should be given to listening to children and to counselling and teaching them in developmentally appropriate, yet individualistic, ways. The study by Alderson et al suggests that children’s levels of understanding and their ability to make decisions about their diabetes may be different in practice than has been suggested by established developmental norms.

    Further research is needed to examine the ways in which developmental stage (rather than just life experiences) affects young children’s experiences with diabetes, particularly in terms of the development of decision making skills.

    The findings of Alderson et al suggest that children ought to be individually assessed to determine the extent to which they can and should be included in collaborative partnerships with their parents and healthcare professionals.

    View Abstract

    Footnotes

    • For correspondence: Professor P Alderson, Social Science Research Unit, Institute of Education, University of London, London, UK

    • Source of funding: Social Science Research Unit Childhood Research Fund.

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