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Levers and barriers to patient-centred care with school-age children living with long-term illness in multi-cultural settings: Type 1 diabetes as a case study

Tyler (formerly Curtis), K. (2009). Levers and barriers to patient-centred care with school-age children living with long-term illness in multi-cultural settings: Type 1 diabetes as a case study. (Unpublished Doctoral thesis, City University London)


In response to the Children's National Service Framework and NHS modernisation agenda on the involvement of stakeholders, and to an important problem for children, families and clinicians in the local health economy, this study aims to understand and identify levers and barriers to patient-centred care in multi-cultural settings for children living with long-term illness. I carried out qualitative work with 17 children aged between 4 and 11 years-old being treated for type 1 diabetes in two clinics in East London. I synthesised findings from this with findings from 13 other studies of the experiences of school-age children living with type 1 diabetes or - in order to explore the generalisability of diabetes studies - children living with asthma.

Findings suggest that, across illnesses and ethnicities, although school-age children share their health care, usually with mothers, their care is affected by their own experiences and understandings of the illness and regimen, the relative disruption these experiences cause across physical, social and emotional spheres, and the extent that these are exacerbated by their low social status - compounded especially in multi-cultural settings, by structures at meso- and macro-levels. Disruption to precious 'free' time and social identity are a particular concern for children.

Key characteristics of patient-centred care are, therefore, engagement with school-age children's day-to-day experiences and understandings of their illness and care, and recognition of the extent to which decision-making is shared between children and adults in domestic settings. Barriers to the achievement of these include current medical and generational hierarchies, in particular their impact in the clinical encounter, and views of children which emphasise their developing competencies as adults-in-the-making as opposed to people in their own right. Unless these are tackled, technologies to ensure children have greater opportunity to set the agenda in clinical environments could become merely instruments for coercion and manipulation. To avoid this we need to disseminate new ways of thinking about children and childhood and better understandings of children's experiences of their health and health care. Particularly important are models of childhood from the social studies of children; and the 'evidence-based' paradigm where the key role of 'users' in the development of good services is recognised.

Findings have implications for our understandings of not only generational inequality on children's experiences of long-term illness and care; but also of how adult views of children as 'becomings' make it difficult for adults to relinquish control over children's lives. Findings also include reflections on new approaches to the synthesis of qualitative data, and raise issues around the distinction of 'process' from 'findings' data, and undertaking qualitative synthesis as a sole researcher.

Publication Type: Thesis (Doctoral)
Subjects: H Social Sciences > HT Communities. Classes. Races
R Medicine > RJ Pediatrics > RJ101 Child Health. Child health services
Departments: School of Health & Psychological Sciences > Midwifery & Radiography
[thumbnail of Tyler, Katherine - redacted.pdf]
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