Abstract
AimTo 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.DesignDescriptive qualitative research.MethodsSeventeen semi‐structured interviews were conducted with patients and family carers living in Scotland during 2015–2016 and thematically analysed.ResultsTo 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.
Highlights
The interdependency of health and social care is well established (Avendano & Kawachi, 2014; Bradley, Elkins, Herrin, & Elbel, 2011; Winters, Magalhaes, Kinsella, & Kothari, 2016) and there is a major political drive towards integration of health and social care ser‐ vices across the European Union (European Social Network, 2017; Scottish Government, 2015)
The aetiology of Duchenne/Becker muscular dystrophy (D/BMD) and motor neurone disease (MND) differs, but patients face a common set of challenges in terms of living with similar types of
During the past 20 years, home mechanical ventilation (HMV) has been implemented in an increas‐ ing number of countries, but the care arrangements which support HMV, vary greatly between and within countries (Ando et al, 2015; Hannan et al, 2016; Lloyd‐Owen et al, 2005; Nasiłowski et al, 2015; Stuart & Weinrich, 2001)
Summary
The interdependency of health and social care is well established (Avendano & Kawachi, 2014; Bradley, Elkins, Herrin, & Elbel, 2011; Winters, Magalhaes, Kinsella, & Kothari, 2016) and there is a major political drive towards integration of health and social care ser‐ vices across the European Union (European Social Network, 2017; Scottish Government, 2015). A small number of qualitative (mainly Scandinavian) studies have been conducted into the experiences of adults receiving HMV for various health conditions, (cf Ballangrud, Bogsti, & Johansson, 2009; Dreyer, Steffensen, & Pedersen, 2010a; Dreyer, Steffensen, & Pedersen, 2010b; Ingadóttir & Jonsdottir, 2006; Laakso, Markström, Havstam, Idvall, & Hartelius, 2014; Lindahl, 2010; Lindahl, Sandman, & Rasmussén, 2005) These confirm the findings of studies using HRQoL (that HMV has a generally positive impact on patients’ lives), but they uncover new complexities (Ingadóttir & Jonsdottir, 2006). Becoming dependent on a ventilator can be both life‐saving and symbolic of death, disease and deterioration (Ballangrud et al, 2009; Lindahl, 2010)
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
