Managing communication changes in persons with multiple sclerosis: Findings from qualitative focus groups

BACKGROUND: There is growing recognition that communication can be affected in multiple sclerosis (MS) and can negatively impact relationships, employment and psychological well‐being. Some persons with MS (PwMS) implement strategies to facilitate their communication; however, some do not. Most PwMS who report communication changes do not engage with speech–language pathology (SLP) services. This raises concerns that a large portion of communication changes associated with MS go under‐recognized and unmanaged. Little is known about what PwMS want and need to facilitate effective communication. AIM: To explore what PwMS want and need to better manage their communication changes. METHODS & PROCEDURES: Three focus groups were conducted online using Zoom, with a total of 12 PwMS. Participants were an opportunistic sample of PwMS within Australia recruited via advertisements distributed to various MS organizations and clinics. Data were transcribed verbatim and analysed using thematic content analysis to provide a qualitative analysis of the data. OUTCOMES & RESULTS: Two main themes emerged: (1) accessible knowledge and a holistic approach; and (2) partnerships. Specifically, the identified wants and needs of participants included: (1) assessment; (2) information; (3) raising awareness; (4) support groups; (5) a whole‐person approach to intervention; (6) geographically and economically accessible and navigable services; (7) effective patient–physician interactions; and (8) a multidisciplinary team‐based approach (e.g., SLP, psychology, neuropsychology, occupational therapy). CONCLUSIONS & IMPLICATIONS: This study identified a wide range of unmet wants and needs of PwMS related to communication changes. Participants wanted improved collaborative partnerships with healthcare professionals to better manage their communication changes. For example, healthcare professionals could ask PwMS about potential communication changes, provide education and make appropriate referrals. Education and information provision could focus on communication changes in MS, factors that trigger or exacerbate communication changes, impacts, self‐management strategies, and available supports and services. Specific implications for clinical practice and future research are suggested in this paper, including ideas for patient education materials and content, suggestions for communication‐specific screening and information that could be shared in patient–physician interactions, the development of guidelines to systematically screen, assess, manage and monitor communication changes in MS, and the design of evidence‐based communication interventions for this clinical population. The results from this study can be used to guide the design of supports and services to help PwMS better manage communication changes, with the aim to reduce the negative impacts. WHAT THIS PAPER ADDS: WHAT IS ALREADY KNOWN ON THIS SUBJECT: PwMS can experience communication changes across a range of domains, including speech, voice, fluency, expressive and receptive language, and cognitive–linguistic functions. These changes can have profound and far‐reaching negative impacts on educational and vocational outcomes, social participation, relationships, psychological well‐being, and quality of life. Most PwMS who report communication changes do not engage with SLP services. There has been little research exploring what PwMS want and need to help manage their communication changes. WHAT THIS PAPER ADDS TO THE EXISTING KNOWLEDGE: This research is the first study of its kind that sets out specifically to explore what PwMS want and need to better manage their communication changes. This study increases our understanding of, and provides valuable insights into, the specific types of supports and services PwMS desire to access, and the partnerships and kinds of interactions PwMS dream of having with healthcare professionals to manage these changes. This information can facilitate the development of future interventions to manage communication changes in MS. WHAT ARE THE POTENTIAL OR ACTUAL CLINICAL IMPLICATIONS OF THIS WORK? PwMS wanted healthcare professionals to ask about potential communication changes, provide education and make appropriate referrals. When providing education and information on communication changes in MS, healthcare professionals should focus on covering symptoms, triggers, impacts, self‐management strategies, and available supports and services. There is a timely need to develop guidelines and interventions to manage communication changes in MS to reduce their negative impacts.