Managing communication changes in persons with multiple sclerosis: Findings from qualitative focus groups.
Sarah El-Wahsh, Susan Balandin, Hans Bogaardt and 2 others
PMID 35338749WHAT IT FOUND
People with MS wanted routine communication assessment, practical information, affordable services, support groups, and clinicians who ask about communication and refer to speech pathology, psychology, OT and neuropsychology.
Key findings
01Participants wanted regular evaluation and monitoring of communication, because physical skills were routinely checked but communication was not.
02Participants wanted practical information about communication changes at diagnosis, in accessible formats, and for family and communication partners.
03Participants wanted clinicians to ask about communication, acknowledge concerns, and involve a multidisciplinary team including speech pathology, psychology, occupational therapy and neuropsychology.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
Read the rest of this summary
You get three full summaries a month, free, and we do not ask for a card. Search, the TL;DRs and your library stay unlimited either way.
What it does not show
Only 12 people took part, all from Australia, all with relapsing-remitting MS, and the group included 11 females and one male. Participants had to speak English, report a formal MS diagnosis, report communication difficulties, and report no coexisting neurological conditions or history. The online Zoom format may have excluded people without technology equipment or skills and may have deterred people with more severe communication changes. The study reports wants and needs, not tested outcomes, so it cannot show whether proposed services improve communication or quality of life. The authors call this a preliminary study and say the views of 12 Australian participants cannot be generalised to the overall MS population.
Declared interests
The authors declared no conflicts of interest.
The easy way to misread this
Do not read these wants as proof that routine communication assessment, support groups, or multidisciplinary care improve outcomes. The study asked 12 participants what they wanted and did not test any service.