Edinburgh Napier University

  Aim
To contribute insight into health and social care integration through an exploration of the care experiences of adults with degenerative neuromuscular conditions who use a mechanical ventilator at home.
Design
Descriptive qualitative research.
Methods
Seventeen semi-structured interviews were conducted with patients and family carers living in Scotland during 2015-2016, and thematically analysed.
Results
To achieve a satisfying life, home-ventilated participants required help from a variety of health and social care services, as well as care from family. Examples of successful care were identified, but there were also serious failures and conflict with services. Identifying how care fails or succeeds for this patient population and their families requires an understanding of the interdependency of health and social care. This was achieved by examining health and social care provision from the experiential perspective of care-users to provide insights into how disconnected provision impacts on users’ lives in numerous, idiosyncratic ways.