TY - JOUR
T1 - The lived experience of adults and parents
T2 - Transitioning from paediatric to adult health care with oesophageal atresia and tracheo-oesophageal fistula
AU - Haig-Ferguson, Andrew
AU - Wallace, Vuokko
AU - Davis, Cara
PY - 2022/4/22
Y1 - 2022/4/22
N2 - 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.
AB - 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.
KW - healthcare transition
KW - oesophageal atresia
KW - paediatric
KW - rare disease
UR - http://www.scopus.com/inward/record.url?scp=85128752902&partnerID=8YFLogxK
U2 - 10.1111/jocn.16333
DO - 10.1111/jocn.16333
M3 - Article
JO - Journal of Clinical Nursing
JF - Journal of Clinical Nursing
SN - 0962-1067
ER -