A transition program to adult health services for teenagers receiving long‐term home mechanical ventilation: A longitudinal qualitative study

Abstract

Objective Adolescents receiving long‐term home mechanical ventilation (HMV) who survive into adulthood must transition to adult health care services. Lack of transition readiness is reported to result in poor health outcomes. The objective of this study is to explore longitudinally the pediatric‐to‐adult health care transition experience involving a transition program for adolescents receiving HMV including transition readiness, barriers, facilitators, and modifiable features. Design A prospective qualitative longitudinal interview study of adolescent and family caregiver dyads recruited through a pediatric‐to‐adult HMV transition program jointly established by two collaborating health centers: The Hospital for Sick Children and West Park Healthcare Centre in Toronto, Canada. Eligible dyads were interviewed at three time points: pretransition, transition, and 12‐months posttransition. Interviews were transcribed verbatim and analyzed using directed content analysis methods. Results Ventilator‐assisted adolescents (VAAs) and caregiver participants perceived a lack of transition readiness in their ability to manage health communication and coordination across multiple adult providers. Transition facilitators included early transition discussion, opportunities for VAAs to speak directly with HMV providers during appointments, receipt of print informational materials regarding adult services, and a joint pediatric‐adult team handover meeting. Modifiable transition barriers included lack of other specialist referrals, insufficient information about adult homecare service funding, and limited involvement of family doctors. Unresolved transition barriers resulted in perceptions of service fragmentation. Conclusions Although the pediatric‐to‐adult HMV transition program conferred benefits service fragmentation was perceived. Transition barriers may be overcome through early planning and staged transition with all specialists, community providers, and the family and adolescent working in collaboration.

ERS statement on paediatric long-term noninvasive respiratory support

“…Ten to 40% of adolescents on long term NIV (more than those on CPAP) are transitioned to adult units [91,102,103,105,107,112,123,124,[251][252][253], with a number that tends to increase [105]. Transition facilitators and barriers have been identified [251,253]. But in practice, the availability of a transition program is rarely specified [252].…”

The experience of family caregivers of ventilator-assisted individuals who participated in a pilot web-based peer support program: A qualitative study

“… 39 Our group has previously identified health system-related challenges caregivers to VAIs experience, including a lack of access to referrals. 40 The integration of system navigators in the context of ventilator-care may address gaps in caregiver navigational needs within the existing system. Our findings also suggest that despite the challenges of providing care to a VAI, there are facilitators that may help ease the caregiving experience.…”

Transition to Adult Care in Children on Long-Term Ventilation

“…Dale et al's ( 29 ) recent qualitative research explored the transition experience of patients who had undergone the home mechanical ventilation (HMV) transition program of a tertiary children's hospital to their partnering adult hospital. Identified factors that aided transition include early transition discussion, joint pediatric—adult HMV clinic visits, written information about adult services, and communication training for the adolescents to improve their capacity to give accurate medical histories and discussions of their needs with the clinical team.…”

“…Dale et al's(29) recent qualitative research explored the transition experience of patients who had undergone the home mechanical ventilation (HMV) transition program of a tertiary children's hospital to their partnering adult hospital. Identified factors that aided transition include early transition discussion,…”