Risk owners and risk managers: Dealing with the complexity of feeding children with neurodevelopmental disability

Abstract

This paper illustrates negotiations around risk between lay people and clinicians in relation to gastrostomy interventions for disabled children. These negotiations centre on differing interpretations of what constitutes risk in relation to the safety of oral feeding and a child's need for a feeding tube between parents, carers and clinical specialties. Drawing on Heyman's distinction between risk managers and risk owners, we show that not only do clinicians act as risk managers and parents and carers as risk owners, but that these distinctions often become blurred either because of the shifting dynamics of relations of care or because of the specificity of clinical practice. Parents become risk managers in relation to carers' roles, while clinicians become risk owners in relation to particular procedures which define their practice. This has implications for lay and expert interactions as well as professional accountability for those caring for children with complex medical conditions. Although not an empirical article, we draw on empirical work in the UK. We analyse both parental and professional constructions of risk based on observations of co-ordinating a clinical trial designed to evaluate the effectiveness of gastrostomy surgery. We also examine the diverse value systems used by different groups of professionals and lay carers which inform judgements about risk and feeding. We conclude by arguing that issues of risk in contemporary health care are not just examples of ‘manufactured uncertainty’ or of ‘negotiated power’ but constitute a dialectical relationship which breaks down the essentialist dualism of lay and professional constructions of risk.

Keywords:

• UK
• lay knowledge
• risk
• infant feeding
• gastrostomy
• risk management
• aspiration
• neurodevelopmental disability

Acknowledgements

We would like to thank Bob Heyman for his ideas on risk managers and risk owners.

Notes

1. A barium swallow is an X-ray taken to examine the oesophagus, stomach and small intestine.

2. Gastro-oesophageal reflux disease (GORD) is a condition whereby the content of the stomach (food or liquid) moves backwards from the stomach into the oesophagus causing heartburn, regurgitation and effortless vomiting in extreme cases. This can also be aspirated into the airway.

3. The tests described here are not meant to be exhaustive and children may undergo other investigations such as 24-h Ph monitoring, endoscopy.

4. The term ecological validity is borrowed from research to reflect whether the methods, materials and setting of the study approximate real world contexts and hence whether findings can be generalised across different settings. It is related to external validity. See Campbell and Stanley (1967).