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Cited by 45Respiratory Support and MechanismsNursing care and researchAssistive Technology in Communication and Mobility

Life with home mechanical ventilation for young men with Duchenne muscular dystrophy

Dreyer, Pia Sander, Steffensen, Birgit F., Pedersen, Birthe D.·2010·Journal of Advanced Nursing
DOI 10.1111/j.1365-2648.2009.05233.x
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Abstract

dreyer p.s., steffensen b.f. & pedersen b.d. (2010) Life with home mechanical ventilation for young men with Duchenne muscular dystrophy. Journal of Advanced Nursing66(4), 753–762. Title. Life with home mechanical ventilation for young men with Duchenne muscular dystrophy Aim. This paper is a report of a study from a patient perspective of the life experiences with home mechanical ventilation among young men with Duchenne muscular dystrophy. Background. People with chronic respiratory failure due to neuromuscular diseases have been offered life‐long ventilator support at home for more than a decade. People having this treatment are positive about it and agree on having made the right choice about receiving it. Method. Nineteen people with Duchenne muscular dystrophy and invasive home mechanical ventilation were interviewed in 2007. The interviews were tape‐recorded, transcribed verbatim and analysed according to a method inspired by Ricoeur’s theory of interpretation, which consists of: a naive reading, a structural analysis, and a critical analysis and discussion. Findings. The participants described how the ventilators had saved their lives and were the best thing that had happened to them, but they had had difficulty making the decision of when to start invasive ventilation. Invasive ventilation was preferred to non‐invasive ventilation by those who had experienced both. The participants wanted individualized care tailored to their needs in the home setting. Problems were described as being due to both human and technical factors, and sometimes resulted in inadequate ventilation. Conclusion. Society needs to discuss if it is a basic human right to be able to breathe, and whether people with Duchenne muscular dystrophy therefore have the right to invasive home mechanical ventilation. Healthcare professionals need to guide ventilator‐users in decision‐making about when to receive invasive home mechanical ventilation.

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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 [11]

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Authors
Dreyer, P. S., Steffensen, B. F., & Pedersen, B. D.
Affiliations
  • Aarhus University Hospital (DK)
  • University of Southern Denmark (DK)
Corresponding author
Dreyer, Pia Sander
ORCID
Venue
Journal of Advanced Nursing
Publisher
Wiley
Published
2010-03-10
Volume
66
Issue
4
Pages
753-762
ISSN
  • 0309-2402 (ISSN-L)
  • 1365-2648
DOI
10.1111/j.1365-2648.2009.05233.x
OpenAlex
W1978708662
Cited by
45
References
32
Citations by year
2026: 3 · 2024: 2 · 2023: 4 · 2022: 3 · 2021: 2 · 2020: 1 · 2019: 5 · 2018: 4 · 2017: 4 · 2016: 4 · 2015: 1 · 2014: 4 · 2013: 6 · 2012: 1
FWCI
2.13
Type
journal article
Language
en
Open access
closed
Licence
onlinelibrary.wiley.com/termsAndConditions#vor (vor)
Locations
  • Journal of Advanced Nursing (publishedVersion)
  • PubMed (publishedVersion)
  • University of Southern Denmark Research Portal (University of Southern Denmark) (submittedVersion)
Funders
Aarhus Universitetshospital
Topics
  • Health Sciences › Medicine › Pulmonary and Respiratory Medicine › Respiratory Support and Mechanisms
  • Health Sciences › Health Professions › Pharmacy › Nursing care and research
  • Health Sciences › Health Professions › Occupational Therapy › Assistive Technology in Communication and Mobility
Keywords
Duchenne muscular dystrophy, home mechanical ventilation, invasive mechanical ventilation, patient perspectives, life experience, chronic respiratory failure, neuromuscular disorders, non-invasive ventilation, individualized care
MeSH terms
Adult, Attitude to Health, Home Care Services, Humans, Male, Respiration, Artificial, Ventilators, Mechanical, Respiratory Insufficiency, Muscular Dystrophy, Duchenne, Narration, Young Adult

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