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Area of Science:

  • Neurology
  • Speech-Language Pathology
  • Health Psychology

Background:

  • Communication changes in multiple sclerosis (MS) significantly impact relationships, employment, and well-being.
  • Many persons with MS (PwMS) experiencing communication changes do not seek speech-language pathology (SLP) services, leading to under-recognition and unmanaged symptoms.
  • There is a lack of understanding regarding the specific needs and desires of PwMS for managing communication challenges.

Purpose of the Study:

  • To explore the wants and needs of persons with MS (PwMS) for effectively managing their communication changes.
  • To identify desired supports, services, and healthcare professional interactions to improve communication management in MS.

Main Methods:

  • Qualitative study employing three online focus groups with 12 persons with MS (PwMS) in Australia.
  • Participants were recruited through MS organizations and clinics.
  • Thematic content analysis was used to analyze verbatim transcriptions of the focus group discussions.

Main Results:

  • Two primary themes emerged: the need for accessible knowledge and a holistic approach, and the importance of partnerships.
  • Key wants and needs included assessment, information, awareness-raising, support groups, a whole-person intervention approach, accessible services, effective patient-physician interactions, and multidisciplinary team-based care.
  • PwMS desire proactive communication from healthcare professionals, including screening, education on triggers and impacts, and appropriate referrals.

Conclusions:

  • This study reveals significant unmet needs among PwMS for managing communication changes, emphasizing the desire for collaborative partnerships with healthcare providers.
  • Healthcare professionals should initiate conversations about communication changes, provide comprehensive education, and facilitate referrals to specialized services like SLP.
  • Findings can guide the development of targeted interventions, patient education materials, and clinical guidelines to improve communication management and reduce negative impacts for PwMS.