Communication, information gathering and use among ALS stakeholders: Diagnosis and care

• Author / Creator

  Moir, Mackenzie

• The pre and post diagnostic phases of amyotrophic lateral sclerosis (ALS) care are inherently uncertain for patients and caregivers. The emotional character of ALS related communications requires that providers have a high degree of skill and tact. Understanding patient and caregiver preferences is an important component of high-quality clinical communication. External information seeking is common pre and post diagnosis, indicating a degree of information deficit among this disease group. In this qualitative work I investigate the information and communication needs of ALS patients (n=12), caregivers (n=10), and providers (n=13) during diagnosis and over the disease course (n=35). Using qualitative content analysis methods I explore the ALS communication environment by: 1) analyzing the ALS diagnostic experience of my cohort, including their communication needs and information preferences. 2) identifying the information seeking practices of patients and caregivers over the course of their disease. The use and value of this information is also explored. Preferences related to information source and content are discussed. This thesis also provides recommendations for clinicians that are focused on the delivery of a diagnosis. It also emphasizes the importance of ALS patient and caregiver support groups as a medium of information exchange and facilitator of successful adaptation.

• Subjects / Keywords

  • Care
  • ALS
  • Diagnosis
  • Information
  • Communication

• Graduation date

  Spring 2019

• Type of Item

  Thesis

• Degree

  Master of Science

• DOI

  https://doi.org/10.7939/r3-zadf-yh04

• License

  Permission is hereby granted to the University of Alberta Libraries to reproduce single copies of this thesis and to lend or sell such copies for private, scholarly or scientific research purposes only. Where the thesis is converted to, or otherwise made available in digital form, the University of Alberta will advise potential users of the thesis of these terms. The author reserves all other publication and other rights in association with the copyright in the thesis and, except as herein before provided, neither the thesis nor any substantial portion thereof may be printed or otherwise reproduced in any material form whatsoever without the author's prior written permission.