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

Abstract

This is the accepted version of the paper.This version of the publication may differ from the final published version. 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. Permanent repository linkAlthough 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.

Psychosocial aspects of feeding children with neurodisability

“…29 Although some experts currently question the necessity of a complete nil-by-mouth regimen for the majority of children with CP, other health care professionals may feel reluctant to take this risk. 30 On the other hand, parents may be reluctant to accept professional advice that oral feeding is unsafe. 30 This can be controversial particularly where aspiration is 'silent', with no obvious, outward sign of distress.…”

“…30 On the other hand, parents may be reluctant to accept professional advice that oral feeding is unsafe. 30 This can be controversial particularly where aspiration is 'silent', with no obvious, outward sign of distress. 30 Advice to parents on the safety of oral feeding should be given within the context of the multidisciplinary team following appropriate investigations and assessment of risk.…”

“…30 This can be controversial particularly where aspiration is 'silent', with no obvious, outward sign of distress. 30 Advice to parents on the safety of oral feeding should be given within the context of the multidisciplinary team following appropriate investigations and assessment of risk. 26 Although feeding by tube might make life easier for caregivers compared with oral feeding only, this may not be the best advice to give mothers who want to hear about the benefits to the child.…”

Constructing embodied identity in a ‘new’ ageing population: A qualitative study of the pioneer cohort of childhood liver transplant recipients in the UK

“…(Edward, aged 28, transplant aged 2) Parents were reported to act as case managers, delivering ongoing care and having oversight of hospital appointments; if not possessing medical expertise, then at least following closely the medical direction for their child (Craig and Higgs 2012). As one participant recalled, her reaction to her mother telling her she needed a liver transplant aged 9 was: 'If my mum told me, then that was that.'…”

Exploration des dilemmes éthiques entourant le traitement de la dysphagie à l’enfance et leurs solutions : perceptions d’intervenants

“…Le traitement de la dysphagie à l'enfance peut engendrer des problèmes d'ordre éthique à la fois chez les intervenants et les familles, et ce, surtout lorsque les interventions se révèlent inefficaces [7]. Il arrive, en effet, que les traitements prodigués ne soient pas efficaces et que l'alimentation orale soit non sécuritaire, en raison notamment d'un haut taux d'aspiration (c'est-à-dire l'entrée de corps étrangers dans les voies respiratoires sous les cordes vocales) qui peut avoir des conséquences négatives non seulement sur le statut nutritionnel de l'enfant (risque de dénutrition), mais également sur sa santé respiratoire (risque d'infections pulmonaires qui peuvent mener au décès de l'enfant).…”