Abstract
Background: The paediatric airway and Long Term Ventilation (LTV) service offers specialist care to approximately 50 patients requiring LTV of which 5 to 6 transition annually to the adult respiratory team. Transition to adult services for adolescents with complex and life limiting health conditions and their families can be experienced by them as a time of uncertainty and loss. Standardised models of transition may not be appropriate for children experiencing developmental, cognitive and emotional delay.
Aims: To obtain feedback from parents/carers of children attending our LTV clinic regarding their knowledge and views about transition as part of a service evaluation to inform quality improvement of the LTV transition pathway.
Method: Parents/carers of young people attending the outpatient paediatric respiratory clinic were invited to give anonymous feedback to an 8 item, mixed methods questionnaire.
Results: We received feedback from 15 parents/carers of young people (mean age 11.9 years) who attended our LTV clinic. Age 16 was the most frequent response for age at which transition planning should start (n= 7) and age for first joint appointment with the adult team (n= 7). Initial themes to emerge from qualitative data include: The Unknown; Loss (e.g. connection with paediatric team and parental/child voice); Importance of Knowledge (about my child);Uncertainty (e.g.continuity of care);Need for Communication.
Conclusion: Findings highlight barriers to effective transition and will inform quality improvement initiatives including:transition passports;transition information leaflet and changes to transition clinic process.
Footnotes
Cite this article as: European Respiratory Journal 2020; 56: Suppl. 64, 3117.
This abstract was presented at the 2020 ERS International Congress, in session “Respiratory viruses in the "pre COVID-19" era”.
This is an ERS International Congress abstract. No full-text version is available. Further material to accompany this abstract may be available at www.ers-education.org (ERS member access only).
- Copyright ©the authors 2020