'it was that … specialist … that finally listened to us … that's probably a weird answer to what you were expecting': Clinician and carer perspectives on brilliant feeding care

Abstract

Introduction: To extend research on positive aspects of health care, this article focusses on health care for children who tube-feed-this is because knowledge about tube-feeding for children is limited and fragmented. This is achieved by consulting with clinicians and carers who supported children who tube-feed to clarify their understandings of and experiences with brilliant feeding care.

Methods: Nine clinicians and nine carers who supported children who tube-fed were interviewed. The interview transcripts were analysed thematically.

Results: Findings highlighted several features of brilliant feeding care-namely: practices that go above and beyond; attentiveness; empowerment; being 'on the same page'; hopefulness and normalcy.

Conclusions: These findings show that seemingly trivial or small acts of care can make a significant meaningful difference to carers of children who tube-feed. Such accounts elucidate brilliant care as grounded in feasible, everyday actions, within clinicians' reach. The implications associated with these findings are threefold. First, the findings highlight the need for clinicians to listen, be attuned and committed to the well-being of children who tube-feed and their carers, share decision-making, source resources, and instil hope. Second, the findings suggest that carers should seek out and acknowledge clinicians who listen, involve them in decision-making processes, and continue to source the resources required to optimize child and carer well-being. Third, the findings point to the need for research to clarify the models of care that foster brilliant feeding care, and the conditions required to introduce and sustain these models.

Patient or public contribution: All of the carers and clinicians who contributed to this study were invited to participate in a workshop to discuss, critique, and sense-check the findings. Three carers and one clinician accepted this invitation. Collectively, they indicated that the findings resonated with them, and they agreed with the themes, which they indicated were well-substantiated by the data.

Keywords: brilliant care; child health; feeding difficulties; tube-feeding.