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• W4224253509 abstract "Abstract Aim and Objective To explore the experience of healthcare transition from paediatric to adult health care for adults born with oesophageal atresia and tracheo‐oesophageal fistula (OA/TOF) and parents. Background OA/TOF is a rare and chronic health condition that can require lifelong medical follow‐up and management. There is evidence to suggest that transitioning from paediatric to adult health care can be problematic for people with rare and chronic conditions, including OA/TOF. The previous literature suggests that the experience of transitioning with a rare condition is more complex than transitioning with a common chronic condition. Design The current study was a qualitative, cross‐sectional, survey‐based study. Methods Data were collected through an online survey. Parents of children born with OA/TOF ( n = 23) and adults born with OA/TOF ( n = 16) were recruited through a UK‐based OA/TOF patient charity. Data from six open‐ended questions were analysed using a hybrid approach combining elements of inductive and deductive thematic analyses. Throughout the research process, the SRQR were followed. Results Five themes were constructed during the analysis, reflecting the experience of parents and adults transitioning from paediatric to adult health care: thrown into the unknown; a cultural shift; stepping back and stepping up; ‘no transition as such’; and living with uncertainty. Conclusions The findings suggested that a formalised, managed healthcare transition is not commonly experienced by people born with OA/TOF and parents. Relevance to Clinical Practice We recommend a formalised healthcare transition process in OA/TOF, including preparation for transition and having a named key worker to manage the multidisciplinary transition process. The results also highlighted the need for adults born with OA/TOF to have access to a specialist health service with knowledge and understanding of issues related to OA/TOF." @default.
• W4224253509 created "2022-04-26" @default.
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• W4224253509 date "2022-04-22" @default.
• W4224253509 modified "2023-10-14" @default.
• W4224253509 title "The lived experience of adults and parents: Transitioning from paediatric to adult health care with oesophageal atresia and tracheo‐oesophageal fistula" @default.
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• W4224253509 doi "https://doi.org/10.1111/jocn.16333" @default.
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