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Children as partners with adults in their medical care
P Alderson1, K Sutcliffe, K Curtis
1Social Science Research Unit, Institute of Education, University of London, London, UK. p.alderson@ioe.ac.uk
Insights
Children with type 1 diabetes demonstrate significant understanding and skill in managing their condition, aiming for normalcy. Their experiences empower them to make informed decisions about their health care.
Area of Science:
- Pediatric Endocrinology
- Child Psychology
- Health Management
Background:
- Type 1 diabetes requires lifelong management.
- Children's perspectives on chronic illness are often overlooked.
- Understanding children's roles in self-management is crucial for effective care.
Purpose of the Study:
- To explore children's views on type 1 diabetes.
- To understand how children participate in managing their diabetes care with adults.
Main Methods:
- Semi-structured interviews were conducted with 24 children aged 3-12 years with type 1 diabetes.
- Interviews were tape-recorded in 2003 at London and commuter town hospitals.
- A purposive sampling strategy was employed.
Main Results:
- Children exhibited high levels of understanding, knowledge, and skills regarding their diabetes.
- Key goals for children included "being normal" and "just getting on with their lives."
- Children actively engaged in decision-making regarding their treatment.
Conclusions:
- Children's experiences with diabetes foster informed decision-making and self-management skills.
- Children navigate a balance between social well-being ("being normal") and physiological control (glycaemia).
- Findings support increased child involvement and shared responsibility in diabetes care, aligning with children's rights and policy goals.
Aims:
To investigate the seldom published views of children with type 1 diabetes about their condition and ways in which they share in managing their medical and health care with adults.
Methods:
Semi-structured, tape recorded interviews, during 2003, with a purposive sample of 24 children aged 3-12 years who have type I diabetes and who attend two inner London hospitals and one hospital in a commuter town.
Results:
The children reported high levels of understanding, knowledge, and skill gained from their experience of living with diabetes and constantly having to take account of the condition and their paediatrician's guidance. Their key goals were to be "normal" and "just get on with their lives".
Discussion:
The interviews showed that children's experiences of diabetes tended to enable them to make informed, "wise" decisions in their own best interests, even at a young age. They achieved a complicated balance between the sometimes competing goals of social health "being normal" and physiological health in controlling glycaemia. Their competence supports approaches in children's rights and in policy makers' aims that people with diabetes--including children--gain more knowledge, skills, and responsibility for their own care in partnership with healthcare professionals. Consent is usually considered in relation to surgery; however the children showed how they constantly dealt with decisions about consent or refusal, compliance with, or resistance to their prescribed treatment. Their health depends on their informed commitment to medical guidance; more research is needed about the daily realities of children's committed and responsible co-management of their chronic illness.
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