Home bAsed VENtilation and quality of life: the HAVEN study
Research type
Research Study
Full title
Exploring patients' and families' experiences of neuromuscular degenerative conditions and home ventilation
IRAS ID
136826
Contact name
Pam Ramsay
Contact email
Sponsor organisation
Research and Development Department
Duration of Study in the UK
1 years, 6 months, 0 days
Research summary
This is an interview-based study about the everyday lives of patients who have muscle wasting conditions which affect their breathing (neuromuscular respiratory failure)such that they rely on a breathing machine or ventilator in their own homes. It is also about their family members, who provide much of their care and upon whom they are often dependent.
Much of the existing research among this patient and family group focuses on the costs and benefits of Home Ventilation services (specialist respiratory support provided in patient's own homes) rather than tackling the problems they face in their everyday lives. Further, much of this research has been done using standardised questionnaires, which provide only very limited insights into "what it's like" to live with/care for someone with neuromuscular respiratory failure.
This is an interview based study, in which we will invite up to 40 patients and family members to tell us, in their own words, about their everyday lives including; the things that make life worth living, the things that make life difficult, and the things that they would like more support with. The interviews will take place, preferably, in patients' own homes and will last up to an hour. Our primary aim is to provide more meaningful support, by better understanding and raising awareness of the issues among service providers (e.g. Home Ventilation teams), health services managers and policy makers. A secondary aim is improve existing/develop a new questionnaire which more readily captures "what's important" to patients and families for future research.
The study is funded by Edinburgh and Lothian Health Foundation and participants will be recruited from the South East Scotland Home Ventilation team.
REC name
South East Scotland REC 01
REC reference
14/SS/1082
Date of REC Opinion
15 Dec 2014
REC opinion
Further Information Favourable Opinion