Adapting to domiciliary non-invasive ventilation in chronic obstructive pulmonary disease: A qualitative interview study
Open accessAbstract
Background: Domiciliary non-invasive ventilation may be used in palliative care of patients with chronic obstructive pulmonary disease, although there is uncertainty regarding effect on quality of life. Aim: Explore experiences of domiciliary non-invasive ventilation in chronic obstructive pulmonary disease, to understand decision-making processes and improve future palliative care. Design: Qualitative interview study, based on constructivist grounded theory, and using the framework method for data management and analysis. Participants: 20 chronic obstructive pulmonary disease patients, 4 carers and 15 healthcare professionals. Results: Most patients had very severe chronic obstructive pulmonary disease. Data were categorised into four domains – clinical, technical, socio-economic and experiential. Healthcare professionals felt uncertain regarding clinical evidence, emphasising social support and tolerance as deciding factors in non-invasive ventilation use. Conversely, patients reported symptomatic benefit, which generally outweighed negative experiences and led to continued use. Healthcare professionals felt that patients chose to be on non-invasive ventilation; however, most patients felt that they had no choice as healthcare professionals recommended non-invasive ventilation or their poor health mandated it. Conclusions: Our study identifies ‘adapting to non-invasive ventilation’ as the central process enabling long-term use in palliative care, although the way in which this is approached by healthcare professionals and patients does not always converge. We present ideas emerging from the data on potential interventions to improve patient experience and adaptation.
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Participants find it difficult to make an informed choice in favour of invasive home mechanical ventilation and are willing to have more decision-making support.
“Specifically, it indicates that participants find it difficult to make an informed choice in favour of invasive HMV, willing to have more decision-making support [11–13].”
From Life Experiences in Neuromuscular Tracheotomized Patients in Times of Covid-19 (2023) · cites this paper as [13]
The Clinical domain (p. 6) and Clinical issues (p. 10) report that COPD patients felt they had little choice about accepting domiciliary ventilation, supporting the concern about informed choice. But the study concerns non-invasive ventilation, not invasive HMV, and the Conclusion (p. 11) proposes better explanations rather than reporting that participants wanted more decision-making support. (LLM, conf=0.88)
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- Authors
- Gale, N. K., Jawad, M., Dave, C., & Turner, A. M.
- Affiliations
- University of Birmingham (GB)
- Queen Elizabeth Hospital Birmingham (GB)
- Heart of England NHS Foundation Trust (GB)
- Venue
- Palliative Medicine
- Publisher
- SAGE Publications
- Published
- 2014-12-18
- Volume
- 29
- Issue
- 3
- Pages
- 268-277
- ISSN
- 0269-2163 (ISSN-L)
- 1477-030X
- OpenAlex
- W2170831223
- Cited by
- 26
- References
- 26
- Citations by year
- 2026: 3 · 2025: 2 · 2024: 4 · 2023: 4 · 2022: 1 · 2021: 2 · 2019: 4 · 2018: 1 · 2017: 1 · 2016: 3 · 2015: 1
- FWCI
- 1.65
- Type
- journal article
- Language
- en
- Open access
- Locations
- Palliative Medicine (publishedVersion)
- PubMed (publishedVersion)
- University of Birmingham Research Portal (University of Birmingham) (submittedVersion, other-oa)
- Funders
- Queen Elizabeth Hospital Birmingham Charity
- National Institute for Health and Care Research
- University of Birmingham
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Pulmonary and Respiratory Medicine › Respiratory Support and Mechanisms
- Health Sciences › Medicine › Pulmonary and Respiratory Medicine › Chronic Obstructive Pulmonary Disease (COPD) Research
- Keywords
- chronic obstructive pulmonary disease, palliative care, patient experience, decision-making, caregivers, quality of life
- MeSH terms
- Adaptation, Psychological, Adult, Aged, Aged, 80 and over, Attitude of Health Personnel, Female, Home Care Services, Humans, Male, Middle Aged, Palliative Care, Quality of Life, Surveys and Questionnaires, Social Support, Caregivers, Patient Satisfaction, Pulmonary Disease, Chronic Obstructive, Qualitative Research, Noninvasive Ventilation, Grounded Theory
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