A qualitative study of experiences of health and social care in home mechanical ventilation

Abstract

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 has an impact on users' lives in numerous, idiosyncratic ways.