Qualitative study assessing self-management techniques in people with multiple sclerosis.

TitleQualitative study assessing self-management techniques in people with multiple sclerosis.
Publication TypeJournal Article
AuthorsMcMullen KA, Knaster ES, Bamer AM, Ehde DM, Johnson KL, Yorkston KM
JournalMultiple Sclerosis
Issue9 Suppl

Background: Due to the constellation of secondary conditions associated with multiple sclerosis (MS), people with MS manage a variety of symptoms and challenges in their daily lives. Many rehabilitation interventions focus on one condition, such as fatigue. Development and testing of self-management interventions aimed at helping people manage multiple challenges is needed. Qualitative data collection, including focus groups, is an important part of understanding how people with MS experience secondary symptoms and can be used to design a self-management intervention for people with MS. Objectives: To understand self-management techniques people utilize when dealing with their MS symptoms. To use consumer input to inform a self-management intervention intended to increase people’s self efficacy and practical skill set for dealing with the array of MS symptoms. Methods: Participants were recruited through advertisements in newsletters, websites, and self-help groups in Seattle, Washington and from previous studies conducted by the research team. Twelve people participated in two focus groups. Subjects completed questionnaires assessing mobility, quality of life, pain and fatigue, and then took part in focus groups moderated by University of Washington faculty who are trained and experienced facilitators. To explore participants’ self-management techniques, open-ended questions were asked regarding symptoms, challenges, strategies, and management of symptoms. Transcripts were coded for themes and analyzed using rigorous qualitative methodology. Results: Several themes emerged from the focus groups. These included balancing MS symptoms, such as pain and fatigue, with everyday needs in order to get things done, and to prioritize life activities. Participants also discussed the adjustments necessary to cope with changes caused by MS, such as cognitive changes. Content and protocols for a self-management intervention were developed incorporating focus group findings. Specific contributions included manual presentation in several formats on the web and in hard copy, and technology utilization, such as Skype, for the phonebased intervention. Conclusions: MS symptoms necessitate several self-management skills that potentially can be manualized and distributed through local and national resources to promote self-efficacy and to impart new skills. Evaluation of the intervention is needed.


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