Experiences and Challenges in Life-dependent Home Mechanical Ventilation - a Part of the Air For Life Project
Trial Snapshot
- Phase
- Not Applicable
- Status
- Completed
- Sponsor
- Rigshospitalet, Denmark
- Enrollment
- 126
- Locations
- 2
- Primary Endpoint
- Severe respiratory insufficiency questionnaire
Study Overview
Brief Summary
In Denmark, life-dependent home-mechanical ventilation (HMV) is given under the surveillance of a specifically trained respiratory patient caregiver (tPCG). The HMV can be invasive through a tracheostomy or non-invasive via a mask.
The purpose of this study is to uncover experiences and challenges associated with having a trained respiratory patient care giver (tPCG) to surveil home-mechanical ventilation (HMV) from the perspective of the patients and their families and to gather information about the expirence of working in a home as a tPCG
Study Design
- Study Type
- Observational
- Observational Model
- Cohort
- Time Perspective
- Prospective
Eligibility Criteria
- Ages
- 18 Years to — (Adult, Older Adult)
- Sex
- All
- Accepts Healthy Volunteers
- Yes
Inclusion Criteria
- •Patient Age > 18 years Has trained patient care givers to surveil the respiratory treatment and working on the responsibility of the Respiratory Center East
- •Parent Age > 18 years Has a child less than 18 years old with tPCG, working on the responsibility of the Respiratory Center East, to surveil the home-mechanical ventilation
- •Other relative:
- •Age > 18 years Involved in the treatment or support of a relative with tPCG, working on the responsibility of the Respiratory Center East, to surveil the home-mechanical ventilation
- •Trained patient caregivers (tPCG) Age > 18 years Employed by an external agency or by the patient (BPA) to surveil home-mechanical ventilation Certified as tPCG working on the responsibility of the Respiratory Center East
Exclusion Criteria
- •No informed consent to participate
Outcomes
Primary Outcomes
Severe respiratory insufficiency questionnaire
Time Frame: Assessed within the last 7 days
The patients will be asked to fullfill the questionnaire
Secondary Outcomes
No secondary outcomes reported
Investigators
Anne Kathrine Staehr-Rye
Principal investigator, clinical associate professor
Rigshospitalet, Denmark