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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.
Heart Lung Circ ; 31(4): 549-558, 2022 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-34654648

RESUMO

BACKGROUND: There is increasing use of catheter-based therapy as part of the neonatal treatment algorithm for pulmonary atresia with an intact ventricular septum (PAIVS). The management strategies utilised and outcomes of patients with PAIVS at our centre have not been examined. METHODS: A retrospective case series was undertaken including all infants with PAIVS born January 2009 to July 2019 (follow-up to January 2020) managed at The Children's Hospital at Westmead, New South Wales. Demographic features, anatomical substrate, management pathway and subsequent clinical outcomes were examined. RESULTS: Fifty-two (52) infants were included (male n=28, 53.8%). The right ventricular morphology was classified as normal, mildly, moderately and severely hypoplastic in 3 (5.8%), 13 (25.0%), 19 (36.5%) and 17 (32.7%) patients respectively. Thirty-seven (37) patients underwent an initial aortopulmonary (AP) shunt (surgical shunt or patent ductus arteriosus [PDA] stent). The remaining 15 patients underwent an initial intervention to decompress the right ventricle. Twenty (20) patients underwent a neonatal catheter-based intervention. An initial catheter-based intervention was more likely in the second half of the period. Sixteen (16) patients had an attempted pulmonary valve perforation, 12 as their initial procedure. Median follow-up was 62 months (range 3-119 months). Final circulation status was known in 37 patients; biventricular n=14 (37.8%), "1.5 ventricles" n=4 (10.8%), single n=19 (51.4%). There were five deaths during the period (9.6%), including two during the initial procedural admission attributed to tamponade requiring extracorporeal membrane oxygenation (ECMO) at the time of percutaneous pulmonary valve perforation. CONCLUSION: There has been an overall trend towards including catheter-based strategies in the neonatal period as part of management at our centre. Given the risk of bleeding and ECMO related to this, consideration should be given to the availability of multidisciplinary support when planning the timing of these procedures.


Assuntos
Cardiopatias Congênitas , Atresia Pulmonar , Septo Interventricular , Catéteres , Criança , Seguimentos , Cardiopatias Congênitas/cirurgia , Ventrículos do Coração , Humanos , Lactente , Recém-Nascido , Masculino , Atresia Pulmonar/cirurgia , Estudos Retrospectivos , Resultado do Tratamento
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