Transitions to Home Mechanical Ventilation: The Experiences of Canadian Ventilator-Assisted Adults and Their Family Caregivers.

RATIONALE: Several studies have explored the experience of ventilator-assisted individual (VAIs) living at home with family caregivers. However, few explore the experiences of these individuals as they transition from a hospital setting to living at home with a view to identifying modifiable processes that could optimize transition.

OBJECTIVE: This descriptive, qualitative study sought to elucidate barriers to, and facilitators of, transition to home mechanical ventilation (HMV) from the perspective of Canadian VAIs and their family caregivers.

METHODS: Participant recruitment occurred through hospital and community respiratory clinicians based in the four Canadian provinces of Alberta, British Columbia, Ontario, and Saskatchewan. Semi-structured telephone or face-to-face interviews at home were undertaken with 33 individuals including 19 VAIs and 14 family caregivers between 3 to 24 months of transitioning to HMV. Interview data was analyzed using content analysis.

RESULTS: Formal teaching of knowledge and skills relevant to HMV within the hospital setting prior to transition was perceived as having an immediate and enduring positive impact on transition. However, family-clinician conflict, information gaps, and persistent lack of trained personal support workers (PSWs) to provide care in the home contributed to maladjustment relating to transition. Participants strongly recommended improved transitional care in the form of respiratory health professional telephone support, home outreach, in addition to training of PSWs.

CONCLUSION: Transition to HMV is a complex and demanding process. Extended HMV training and support may be helpful in mediating adjustment challenges thus reducing stress, caregiver burden and improving health related quality of life for VAIs and family caregivers.