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  • Advance care planning in amyotrophic lateral sclerosis (ALS): study protocol for a qualitative longitudinal study with persons with ALS and their family carers

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Advance care planning in amyotrophic lateral sclerosis (ALS): study protocol for a qualitative longitudinal study with persons with ALS and their family carers
  1. Isabel Vandenbogaerde1,2,3,
  2. Rose Miranda1,2,3,
  3. Jan L De Bleecker4,
  4. Emma Carduff5,
  5. Agnes van der Heide6,
  6. Lieve Van den Block1,2,3,
  7. Luc Deliens1,2,3,
  8. Aline De Vleminck1,2,3
  1. 1 End-of-Life Care Research Group, Vrije Universiteit Brussel & Universiteit Gent, Brussel, Belgium
  2. 2 Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel, Brussel, Belgium
  3. 3 Department of Public Health and Primary Care, Universiteit Gent, Gent, Belgium
  4. 4 Department of Neurology and Neuromuscular Reference Center, Universitair Ziekenhuis Gent, Gent, Belgium
  5. 5 Marie Curie Hospice Glasgow, Glasgow, Scotland, UK
  6. 6 Department of Public Health, Erasmus MC, University Medical Centre Rotterdam, Rotterdam, Zuid-Holland, The Netherlands
  1. Correspondence to Isabel Vandenbogaerde; isabel.vandenbogaerde{at}vub.be

Abstract

Introduction Amyotrophic lateral sclerosis (ALS) is an incurable motor neuron degenerative disease that has rapid progression and is associated with cognitive impairment. For people with ALS (pALS) and their family carers, advance care planning (ACP) is beneficial, as it can lead to feelings of control/relief and refusal of unwanted treatments. However, evidence concerning the experiences and preferences regarding ACP of pALS and their family carers, especially when their symptoms progress, is scarce. This article describes the protocol for a qualitative longitudinal study that aims to explore: (1) the experiences with ACP and the preferences for future care and treatment of pALS and their family carers and (2) how these experiences and preferences change over time.

Methods and analysis A qualitative, longitudinal, multiperspective design. A total of eight to nine dyads (pALS and their family carers) will be recruited, and semistructured interviews administered every 3 months over a 9-month period. Qualitative longitudinal analysis involves content analysis via in-depth reading, followed by a two-step timeline method to describe changes in experiences and preferences within and across participants.

Ethics and dissemination This protocol has been approved by the central ethical committee of the University Hospital of Brussels, and local ethical committees of the other participating hospitals (B.U.N. B1432020000128). The results will be disseminated via the research group’s (endoflifecare.be) website, social media and newsletter and via presentations at national and international scientific conferences.

  • motor neurone disease
  • qualitative research
  • adult palliative care
http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi.org/10.1136/bmjopen-2021-060451

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    Footnotes

    • Twitter @IVandenbogaerde

    • Contributors Conception and design of the work: IV, JLDB, EC, AvdH, LVdB, LD and ADV. Ethics approval: IV, JLDB, EC, AvdH, LVdB, LD and ADV. Drafting the work: IV. Critical revision for intellectual content: IV, RM, JLDB, EC, AvdH, LVdB, LD and ADV; All authors have read and approved the final manuscript.

    • Funding The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This work was supported by the Research Foundation—Flanders (FWO), grant number G034717N (research project) and grant number 12ZY222N (postdoctoral mandate by ADV). For publishing this article, we would like to acknowledge the support of the University Foundation of Belgium.

    • Competing interests None declared.

    • Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Author note LD and ADV are joint last authors.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.