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1.
J Child Health Care ; 27(2): 182-196, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-34696607

RESUMO

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.


Assuntos
Cuidadores , Promoção da Saúde , Criança , Humanos , Cuidadores/psicologia , Família/psicologia , Nutrição Enteral , Princípios Morais
2.
Health Expect ; 26(1): 488-497, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36482799

RESUMO

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.


Assuntos
Atividades Cotidianas , Cuidadores , Criança , Humanos , Especialização , Pacientes
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