Clinician and carer moral concerns when caring for children who tube-feed.

Child healthcare can be vexed by moral concerns - this extends to the care of children who tube-feed. Children who tube-feed often receive care from family members and clinicians of various disciplines. Each brings expertise, experiences, values, and views to a situation, prioritising the child's needs while attending to those they deem important in potentially disparate ways. Their understanding of a situation is shaped by beliefs, feelings, and perceptions. How then are key decisions made about the care of a child who tube-feeds? This article explores clinicians' and carers' moral concerns when caring for children who tube-feed. Interviews with clinicians (n = 9) and carers (n = 9) clarified three findings: first, there are often disparate beliefs about the need for tube-feeding; second, tube-feeding can evoke strong emotions; and third, it can be difficult to normalise tube-feeding. This article demonstrates how challenges can emerge when relationships between clinicians and carers diverge. Furthermore, it establishes how an ethic of care can bring different interests together to bolster the relationships required to optimise feeding care and promote health outcomes among children who tube-feed and their carers. This requires improved dialogue between and among clinicians and carers to create shared understandings of what is, what should be, and how to benefit children who tube-feed

How is Brilliance Enacted in Professional Practices? Insights from the Theory of Practice Architectures

Brilliance has been overlooked in studies of professional work. This study aimed to understand how brilliant practices are made possible and enacted in a multidisciplinary paediatric feeding clinic, where professionals from different disciplines work together and with parents and carers of children. The existing literature has thematically described brilliance but not theorised how it is accomplished and enabled. Using video reflexive ethnographic methods, the study involved the video-recording of 17 appointments and two reflexive discussions with the participating professionals, who selected and reviewed five episodes exemplifying brilliant care. These were analysed through three themes: carer-friendly and carer-oriented practice; ways of working together; and problem-solving in actu (in the very act of doing). Using the theory of practice architectures, we explored brilliant practices as complexes of sayings, doings, and relatings, identifying the arrangements that enabled those practices and the forms of praxis involved

Paediatric tube-feeding: An agenda for care improvement and research.

This article presents an agenda to improve the care and wellbeing of children with paediatric feeding disorder who require tube feeding (PFD-T). PFD-T requires urgent attention in practice and research. Priorities include: routine collection of PFD-T data in health-care records; addressing the tube-feeding lifecycle; and reducing the severity and duration of disruption caused by PFD-T where possible. This work should be underpinned by principles of involving, respecting and connecting families

Parenting children who are enterally fed: How families go from surviving to thriving.

BACKGROUND:Complex feeding difficulties requiring enteral (tube) feeding affect everyone around the child. Parents experience additional stress and are at risk of social isolation. This study investigated the strategies families develop and use to adjust and adapt to enteral feeding so they were not just surviving but thriving as a family. METHODS:Twenty parents whose children had been or continued to be enterally fed were interviewed, four of them twice as their experience of enteral feeding progressed. Learning theory was used to conceptualize findings in terms of changing use of tools that mediated parents' response to feeding-related challenges. RESULTS:Parents encountered dilemmas relating to enteral feeding: maintaining participation in everyday activities, managing responses to the use of tubes for feeding, and doing what feels right for their child. They used four kinds of mediating tools to overcome these: memory aids and readiness tools, metaphors and narratives, repurposed everyday objects and personalized routines and materialities. CONCLUSIONS:This novel account of tool used to resolve dilemmas provides an empirically and theoretically grounded basis for supporting parents to thrive despite the challenges of enteral feeding. Specifically, it can guide information given to help parents anticipate and cope with dilemmas arising from enteral feeding