Comparing the quality of care for long-term ventilated individuals at home versus in shared living communities: a convergent parallel mixed-methods study

Abstract

Background People on home mechanical ventilation (HMV) belong to a heterogeneous population with complex care needs. In Germany, outpatient intensive care is provided in people's private home (PH) or in shared living communities (SLC). Increasing patient numbers have led to criticism of the quality of care in recent years. Since quality deficits from the perspective of those affected are largely unclear, the following research question emerged: How do interviews with ventilated individuals and family caregivers explain any differences or similarities in the quality of care between PH and SLC? Methods This study used a mixed-methods convergent parallel design, where quantitative and qualitative components were separately collected and analysed. The quantitative component (structured interviews and online survey) included ventilation characteristics, health-related resource use, health-related quality of life (HRQL) measured with the Severe Respiratory Insufficiency Questionnaire (SRI; range 0-100; higher scores indicated higher HRQL) and the Burden Scale of the Family Caregivers short version (BSFC-s; range 0-30; higher scores indicated higher burden). The qualitative component (semi-structured interviews) focused on people's experience of person-centred care. Data were merged using a weaving method and the Picker framework of Person-Centred Care. Results The quantitative component revealed that ventilated individuals living in PHs were on average 20 years younger than participants living in SLCs (n = 46; PH: 46.86 ±15.40 years vs. SLC: 65.07 ±11.78 years; p = .001). HRQL (n = 27; PH: 56.62 ±16.40 vs. SLC: 55.35 ±12.72; p > .999) and the burden of family caregivers (n = 16; PH: 13.20 ±10.18 vs. SLC: 12.64 ±8.55; p > .999) were not significantly different between living situation. The qualitative component revealed that person-centred care is possible in both care settings (ventilated individuals: n = 13; family caregivers: n = 18). Conclusion This study describes a care situation that is as heterogeneous as the population of people with HMV. HRQL and the burden of family caregivers are highly individual and, like person-centred care, independent of the living situation. Policy decisions that facilitate person-centred care need to recognise that quality of care is highly individual and starts with the free choice of the care setting.

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

“…Within the investigation time span , an average of one study per year was published, although no studies were published for three of the years (2012, 2014 and 2016). More than half of the studies (n = 7; 53.9%) were published from 2017 to 2022 (Andersen et al, 2017;Dale et al, 2018;Jacobs et al, 2021;Jacobs et al, 2020;Klingshirn et al, 2022;Nelissen et al, 2019;Valko et al, 2020).…”

“…Of the six quantitative studies, two were based on questionnaires (Rousseau et al, 2011;Valko et al, 2020), three were based on medical records and interview (Andersen et al, 2017;Jacobs et al, 2021;Jacobs et al, 2020), and one was based on questionnaire and interview (Huttmann et al, 2015). The remaining mixed method study was based on interview and an online survey (Klingshirn et al, 2022). In total, the included studies contained findings based on 277 people receiving invasive home mechanical ventilation through a tracheostomy: 90 females and 147 males with various diagnoses.…”

“…Given these purposes, some key findings demonstrate insights into the users' mental health. Eight studies investigated mental health directly; this included quality of life (Andersen et al, 2017;Huttmann et al, 2015;Klingshirn et al, 2022;Rousseau et al, 2011;Valko et al, 2020), user satisfaction (Dyrstad et al, 2013), and mood and well-being (Jacobs et al, 2021;Jacobs et al, 2020).…”

“…Likewise, seven studies reported on the sub-component judgements of quality of life (Andersen et al, 2017;Dale et al, 2018;Huttmann et al, 2015;Klingshirn et al, 2022;Nelissen et al, 2019;Rousseau et al, 2011;Valko et al, 2020). Quality of life has been heterogeneously investigated across the studies, which makes them difficult to compare.…”

“…Quality of life was reported as better among people with neuromuscular diseases than among people with lung diseases (Huttmann et al, 2015). However, increased quality of life was not reported in studies comparing tracheostomy-ventilated people with people receiving other treatments (Andersen et al, 2017;Klingshirn et al, 2022;Rousseau et al, 2011;Valko et al, 2020) or among different home settings (Huttmann et al, 2015). Quality of life among people appeared to differ much, and outcome seems to be closely associated with their diagnosis (Huttmann et al, 2015;Valko et al, 2020).…”