Control in the absence of choice: A qualitative study on decision-making about gastrostomy in people with amyotrophic lateral sclerosis, caregivers, and healthcare professionals

Remko M. van Eenennaam; Neele Rave; Willeke J. Kruithof; Esther T. Kruitwagen-van Reenen; Leonard H. van den Berg; Johanna A. Visser-Meily; Anita Beelen

doi:10.1371/journal.pone.0290508

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Open Access

Peer-reviewed

Research Article

Control in the absence of choice: A qualitative study on decision-making about gastrostomy in people with amyotrophic lateral sclerosis, caregivers, and healthcare professionals

Remko M. van Eenennaam,

Roles Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Project administration, Writing – original draft

Affiliations Department of Rehabilitation, Physical Therapy Science and Sports, UMC Utrecht Brain Center, University Medical Center Utrecht, Utrecht, The Netherlands, Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, University Medical Center Utrecht and De Hoogstraat Rehabilitation, Utrecht, The Netherlands

https://orcid.org/0000-0003-3769-7617

⨯
Neele Rave,

Roles Data curation, Formal analysis, Investigation, Writing – original draft

Affiliations Department of Rehabilitation, Physical Therapy Science and Sports, UMC Utrecht Brain Center, University Medical Center Utrecht, Utrecht, The Netherlands, Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, University Medical Center Utrecht and De Hoogstraat Rehabilitation, Utrecht, The Netherlands
⨯
Willeke J. Kruithof,

Roles Conceptualization, Formal analysis, Methodology, Resources, Supervision, Writing – review & editing

Affiliations Department of Rehabilitation, Physical Therapy Science and Sports, UMC Utrecht Brain Center, University Medical Center Utrecht, Utrecht, The Netherlands, Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, University Medical Center Utrecht and De Hoogstraat Rehabilitation, Utrecht, The Netherlands
⨯
Esther T. Kruitwagen-van Reenen,

Roles Formal analysis, Resources, Writing – review & editing

Affiliations Department of Rehabilitation, Physical Therapy Science and Sports, UMC Utrecht Brain Center, University Medical Center Utrecht, Utrecht, The Netherlands, Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, University Medical Center Utrecht and De Hoogstraat Rehabilitation, Utrecht, The Netherlands
⨯
Leonard H. van den Berg,

Roles Conceptualization, Funding acquisition, Writing – review & editing

Affiliation Department of Neurology, UMC Utrecht Brain Center, University Medical Center Utrecht, Utrecht, The Netherlands
⨯
Johanna A. Visser-Meily,

Roles Conceptualization, Funding acquisition, Methodology, Supervision, Writing – review & editing

Affiliations Department of Rehabilitation, Physical Therapy Science and Sports, UMC Utrecht Brain Center, University Medical Center Utrecht, Utrecht, The Netherlands, Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, University Medical Center Utrecht and De Hoogstraat Rehabilitation, Utrecht, The Netherlands
⨯
Anita Beelen

Roles Conceptualization, Formal analysis, Methodology, Project administration, Writing – original draft

* E-mail: j.a.j.beelen@umcutrecht.nl

Affiliations Department of Rehabilitation, Physical Therapy Science and Sports, UMC Utrecht Brain Center, University Medical Center Utrecht, Utrecht, The Netherlands, Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, University Medical Center Utrecht and De Hoogstraat Rehabilitation, Utrecht, The Netherlands

https://orcid.org/0000-0002-1269-0710

⨯

Control in the absence of choice: A qualitative study on decision-making about gastrostomy in people with amyotrophic lateral sclerosis, caregivers, and healthcare professionals

Remko M. van Eenennaam,
Neele Rave,
Willeke J. Kruithof,
Esther T. Kruitwagen-van Reenen,
Leonard H. van den Berg,
Johanna A. Visser-Meily,
Anita Beelen

Published: September 8, 2023
https://doi.org/10.1371/journal.pone.0290508

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