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.

Home Mechanical Ventilation: A Patient’s Perspective Survey Study

“…In the German study of Schaepe and Ewers, one of the respondents described the total necessity of trusting one's nurse [30], which reflects this high feeling of dependence. Similar feelings of patients concerning their caregivers were described in a Scottish study by MacLaren et al [31].…”

Mental health reported in adult invasive home mechanical ventilation through a tracheostomy: A scoping review

“…The present review gives insights into the users' mental health based on a wide range of reported mental health outcomes in a setting in which no therapeutic alternatives exist and users would die from their illness without treatment. In relation to the subcomponent positive affect, home mechanical ventilation gave people an interest in the lived life, which is confirmed by an international analysis by MacLaren et al (2019). Moreover, MacLaren et al (2019 reported that home mechanical ventilation does not by itself make it possible to live a satisfying life.…”

Experiences and views of patients, carers and healthcare professionals on using modems in domiciliary non-invasive ventilation (NIV): a qualitative study

“…Despite a potentially negative impact on self-efficacy resulting in complacency, both patients and carers reported an increase in confidence due to the remote monitoring. It is recognised that domiciliary NIV is associated with a high carer burden 27 28. The results of this study suggest the use of remote monitoring can increase confidence of carers.…”