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Decision making about gastrostomy and noninvasive ventilation in amyotrophic lateral sclerosis

journal contribution
posted on 2023-06-08, 20:56 authored by Naomi H Martin, Vanessa Lawrence, Joanna Murray, Anna Janssen, Irene Higginson, Rebecca Lyall, Rachel Burman, Nigel LeighNigel Leigh, Ammar Al-Chalabi, Laura H Goldstein
We used thematic analysis to investigate factors affecting decision making about gastrostomy and noninvasive ventilation (NIV) by people with Amyotrophic Lateral Sclerosis (ALS) from the viewpoint of the health care professionals (HCPs) supporting them. We conducted 20 in-depth interviews with 19 HCPs nominated by people with ALS who had made a decision to accept or decline NIV or gastrostomy. We found the main themes influencing decision making were patient-centric, caregiver-related or related to HCPs' own beliefs, perspectives, and actions. HCPs felt patients should be, and were, in control of decision making, although caregivers and HCPs played a role. The patient's evaluation of quality of life, the desirability of prolonging life, and acceptance of the disease and its progression by both patient and caregiver were the most important factors identified by HCPs. HCPs should be aware of the importance of multiprofessional discussions, and the potential influences (identified above) that might require discussion with patients and caregivers.

History

Publication status

  • Published

Journal

Qualitative Health Research

ISSN

1049-7323

Publisher

SAGE Publications

Issue

10

Volume

26

Page range

1366-1381

Department affiliated with

  • BSMS Neuroscience Publications

Full text available

  • No

Peer reviewed?

  • Yes

Legacy Posted Date

2015-11-26

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