Communication in Context: A Qualitative Study of the Experiences of Individuals With Multiple Sclerosis

Abstract

The purpose of this study was to examine an insider’s perspective on communication in multiple sclerosis (MS), a disease of the central nervous system in which scattered lesions or plaques produce varying combinations of motor, sensory, and/or cognitive impairments. Qualitative research methods were used because they are designed to provide a systematic way of exploring complex issues, such as communication, that cannot be separated from the context in which they occur. Seven participants, all of whom had mild communication impairments, described their everyday experiences of communication and the impact of MS on these experiences. Themes derived via inductive analysis of verbatim transcripts included: watching the communication changes , it’s about participating in my life , and communicating is unpredictable . Using the World Health Organization model of disablement, the participants’ communication impairments were mild. However, participants reported major lifestyle changes characterized by important limitations in communicative participation. Whereas some of the limitations were attributed to changes in speech and language, others were thought to be the result of changes in cognition, vision, mobility, and susceptibility to fatigue. Clinical implications include the need to develop assessment protocols and outcome measures that capture issues related to communicative participation in natural contexts and participation in society.

The consequences of spasmodic dysphonia on communication-related quality of life: A qualitative study of the insider's experiences

“…The sound of the voice in isolation did not appear to be as critical of an issue as what the voice changes meant in their daily lives in terms of being able to fulfill job responsibilities, participate in social activities or meet other desired goals. These findings are similar to those of Yorkston, Klasner and Swanson (2001) in which participants with multiple sclerosis focused less on their discrete physical impairments and more on the functional implications of those impairments in the context of social activities. Talking requires physical effort is the second sub-theme under the category of my voice does not work.…”

“…These factors correspond to the three primary themes identified in this study. These three factors are compatible with the biopsychosocial interpretation of the ICF model (Eadie, 2003;Threats, 2002;Yorkston et al, 2001). However, the model proposed in this study was derived from the insider's perspective of his or her own experiences with the communication disorder.…”

Speech Versus Speaking: The Experiences of People With Parkinson's Disease and Implications for Intervention

“…This coding was discussed by the authors and led to the themes that are described below. This approach to analysis was consistent with procedures used in phenomenological research (Benner, 1994) and utilized in research related to acquired neurologic communication disorders (Baylor, Yorkston, & Eadie, 2005;Yorkston, Klasner, & Swanson, 2001). All methods were approved by the Institutional Review Board at the University of Washington.…”

Measuring Communicative Participation: A Review of Self-Report Instruments in Speech-Language Pathology

“…The overall purpose of this article was to provide a review of existing self-report instruments in speech-language pathology for their breadth, depth, and adequacy of evaluating the construct of communicative participation (WHO, 2001;Yorkston et al, 2001). Results indicated that none of six existing instruments were wholly adequate for measuring communicative participation and for meeting the requirements of the current scope of practice in speechlanguage pathology (ASHA, 2001).…”

“…First, participation reflects the final common pathway for many aspects of functioning/disablement (Yorkston, Klasner, & Swanson, 2001). Participation certainly can be altered by the presence of an impairment, limitation in activity, the environment, and personal context.…”