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      What do people affected by amyotrophic lateral sclerosis want from health communications? Evidence from the ALS Talk Project

      1 , 1 , 2 , 1
      Muscle & Nerve
      Wiley

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          Abstract

          Introduction/Aims

          Health communication is central to effective, supportive amyotrophic lateral sclerosis (ALS) clinical care. Guidance for ALS communication is limited, focuses on diagnosis disclosure, and frequently relies on expert consensus and/or reviews. Patient‐based evidence is needed to guide ALS health communication. We investigated how the experiences of ALS patients and family caregivers can inform effective communication practices from diagnosis to end‐of‐life.

          Methods

          Data were drawn from the ALS Talk Project, an asynchronous, online focus group study. Seven focus groups and five interviews (105 participants) were conducted. Data were qualitatively analyzed using directed content analysis and the constant‐comparative approach.

          Results

          We found four primary themes: communication content, communication circumstances, information sufficiency, and communication manner. Data indicate participants relied on clinicians for medical information but also wanted practical information; health communication should attend to the circumstances within which conversations occur; information must be sufficient for individual needs, without overwhelming; and an empathetic, direct, and honest manner facilitated trust. Participants identified communication challenges and strategies to improve communication across major themes, including stepwise approaches and conversations tailored to individuals and their heterogeneous disease experiences.

          Discussion

          Healthcare professionals should discuss patient/caregiver communication preferences early in the therapeutic relationship, co‐develop a communication agreement, and update the agreement in response to changing needs and disease progression. This will foster regular discussion of information needs and promote timely discussions of challenging topics, including advance care, while giving patients and families a sense of control. Findings may have implications for other neuromuscular disease and/or seriously ill populations.

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          Most cited references90

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          Three approaches to qualitative content analysis.

          Content analysis is a widely used qualitative research technique. Rather than being a single method, current applications of content analysis show three distinct approaches: conventional, directed, or summative. All three approaches are used to interpret meaning from the content of text data and, hence, adhere to the naturalistic paradigm. The major differences among the approaches are coding schemes, origins of codes, and threats to trustworthiness. In conventional content analysis, coding categories are derived directly from the text data. With a directed approach, analysis starts with a theory or relevant research findings as guidance for initial codes. A summative content analysis involves counting and comparisons, usually of keywords or content, followed by the interpretation of the underlying context. The authors delineate analytic procedures specific to each approach and techniques addressing trustworthiness with hypothetical examples drawn from the area of end-of-life care.
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            The Discovery of Grounded Theory : Strategies for Qualitative Research

            Most writing on sociological method has been concerned with how accurate facts can be obtained and how theory can thereby be more rigorously tested. In The Discovery of Grounded Theory, Barney Glaser and Anselm Strauss address the equally Important enterprise of how the discovery of theory from data--systematically obtained and analyzed in social research--can be furthered. The discovery of theory from data--grounded theory--is a major task confronting sociology, for such a theory fits empirical situations, and is understandable to sociologists and laymen alike. Most important, it provides relevant predictions, explanations, interpretations, and applications. In Part I of the book, -Generation Theory by Comparative Analysis, - the authors present a strategy whereby sociologists can facilitate the discovery of grounded theory, both substantive and formal. This strategy involves the systematic choice and study of several comparison groups. In Part II, The Flexible Use of Data, - the generation of theory from qualitative, especially documentary, and quantitative data Is considered. In Part III, -Implications of Grounded Theory, - Glaser and Strauss examine the credibility of grounded theory. The Discovery of Grounded Theory is directed toward improving social scientists' capacity for generating theory that will be relevant to their research. While aimed primarily at sociologists, it will be useful to anyone Interested In studying social phenomena--political, educational, economic, industrial-- especially If their studies are based on qualitative data.
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              El Escorial revisited: Revised criteria for the diagnosis of amyotrophic lateral sclerosis

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                Author and article information

                Contributors
                (View ORCID Profile)
                Journal
                Muscle & Nerve
                Muscle and Nerve
                Wiley
                0148-639X
                1097-4598
                September 2023
                July 18 2023
                September 2023
                : 68
                : 3
                : 286-295
                Affiliations
                [1 ] Division of Neurology, Faculty of Medicine and Dentistry University of Alberta Edmonton Alberta Canada
                [2 ] Faculty of Health Sciences Simon Fraser University Burnaby British Columbia Canada
                Article
                10.1002/mus.27935
                37462337
                1195bbf1-e7fd-4522-afd3-f0c8819fa95c
                © 2023

                http://creativecommons.org/licenses/by-nc-nd/4.0/

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