Everyday life experiences of close relatives of people with amyotrophic lateral sclerosis receiving home mechanical ventilation—A qualitative study

2020 ◽  
Vol 29 (13-14) ◽  
pp. 2306-2316 ◽  
Author(s):  
Dorte Winther ◽  
Charlotte Kirkegaard Lorenzen ◽  
Pia Dreyer
Keyword(s):  
Mechanical Ventilation ◽  
Amyotrophic Lateral Sclerosis ◽  
Qualitative Study ◽  
Everyday Life ◽  
Life Experiences ◽  
Home Mechanical Ventilation ◽  
Close Relatives ◽  
Lateral Sclerosis

Home Mechanical Ventilation in Amyotrophic Lateral Sclerosis Patients Is Not Always a Problem

CHEST Journal ◽  
2000 ◽  
Vol 117 (3) ◽  
pp. 924 ◽  
Author(s):  
Emilio Servera ◽  
Elia Gómez-Merino ◽  
Diego Pérez ◽  
Julio Marín
Keyword(s):  
Mechanical Ventilation ◽  
Amyotrophic Lateral Sclerosis ◽  
Home Mechanical Ventilation ◽  
Lateral Sclerosis

Decision-making in the respiratory care of amyotrophic lateral sclerosis: should home mechanical ventilation be used?

1993 ◽  
Vol 7 (4_suppl) ◽  
pp. 49-64 ◽  
Author(s):  
Edward Anthony Oppenheimer
Keyword(s):  
Decision Making ◽  
Mechanical Ventilation ◽  
Amyotrophic Lateral Sclerosis ◽  
Respiratory Function ◽  
Ventilatory Support ◽  
Respiratory Care ◽  
Home Mechanical Ventilation ◽  
Lateral Sclerosis ◽  
At Home

As respiratory function starts to deteriorate in those with amyotrophic lateral sclerosis, one of the principal questions that has to be answered is whether it is appropriate to provide ventilatory support. Although expensive, it is perfectly feasible to provide this at home, and this article examines many of the issues surrounding home mechanical ventilation.

‘I’m almost never sick’: Everyday life experiences of children and young people with home mechanical ventilation

2018 ◽  
Vol 22 (1) ◽  
pp. 6-18 ◽  
Author(s):  
Åsa Israelsson-Skogsberg ◽  
Lena Hedén ◽  
Berit Lindahl ◽  
Katja Laakso
Keyword(s):  
Mechanical Ventilation ◽  
Young People ◽  
Everyday Life ◽  
Medical Technology ◽  
Life Experiences ◽  
Qualitative Content Analysis ◽  
Survival Rates ◽  
Home Mechanical Ventilation ◽  
Children And Young People ◽  
Home Support

Developments in medical technology and treatment have increased the survival rates of children with serious illnesses or injuries, including those receiving home mechanical ventilation, which is a small but growing group. The aim of this study was to explore everyday life experiences of children and young people living with home mechanical ventilation (HMV). Data were obtained through interviews with nine participants. The interviews were supported by photovoice methodology: photographs taken by the participants before or during the interviews were used to facilitate conversation. Interview data were analyzed using qualitative content analysis. The findings revealed that everyday life on a ventilator can be described as including power but simultaneously as characterized by vulnerability to the outside world, comparable to balancing on a tightrope. Various types of technology, both information and communication technology (ICT) and vital medical technology, enabled the participants to engage with the world around them. This study contributes knowledge about the experiences of children and young people with HMV, who depict their lives as good and valuable. The study also underscores, when designing plans and home support, it is necessary to take a sensible approach to personal experiences of what a good life is and what resources are needed to attain and maintain health.

Survival in Amyotrophic Lateral Sclerosis With Home Mechanical Ventilation

CHEST Journal ◽  
2005 ◽  
Vol 127 (6) ◽  
pp. 2132-2138 ◽  
Author(s):  
Eva Farrero ◽  
Enric Prats ◽  
Mónica Povedano ◽  
J. Antonio Martinez-Matos ◽  
Frederic Manresa ◽  
...  
Keyword(s):  
Mechanical Ventilation ◽  
Amyotrophic Lateral Sclerosis ◽  
Home Mechanical Ventilation ◽  
Lateral Sclerosis
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