Communication in context: A qualitative study of the experiences of individuals with multiple sclerosis

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.