The purpose of this study was to examine the experience of participating in a community-based fatigue management programme for people with multiple sclerosis (MS).
Eight people with MS who participated in an 8-week community-based fatigue management programme were interviewed using a semi-structured, open-ended interview protocol. Data were analysed using constant comparative analysis informed by a phenomenological perspective.
Participants experienced ownership, active participation and empowerment. Participants' fatigue was legitimised and validated, and participants described a shared experience and shared voice. Outcomes identified by participants included: lifestyle and occupational changes, altered thinking about fatigue and the development of social supports.
Participants' experience of the community-based fatigue management programme was described in positive terms with unanticipated benefits and outcomes described.
[Show abstract][Hide abstract] ABSTRACT: OBJECTIVE. We determined whether age, gender, work status, or impairment moderated fatigue management program outcomes for people with multiple sclerosis (MS). METHOD. We conducted a secondary analysis of longitudinal data from a randomized controlled trial using mixed-effects models (N = 181) and examined outcomes of fatigue impact, mental health, physical health, and self-efficacy. Measures were collected before and immediately after intervention and at 6 wk, 3 mo, and 6 mo postintervention. RESULTS. Younger participants experienced greater reductions in fatigue impact and greater improvements in self-efficacy over time than did older participants, but we found no age differences in physical or mental health. Participants with less impairment experienced greater mental health gains and were more likely to retain these gains over time than were participants with greater impairment. Although women experienced greater fatigue impact benefits, men experienced greater mental health benefits. Work status did not moderate outcomes. CONCLUSION. Fatigue management program outcomes for people with MS are moderated by age, gender, and impairment.
The American journal of occupational therapy.: official publication of the American Occupational Therapy Association 02/2012; 66(2):187-97. DOI:10.5014/ajot.2012.003160 · 1.70 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: The current understanding that the key for successful healthcare is an integrated approach, involving predictive, preventive, personalized and participatory medicine, is leading major changes. These are: a shift from medical decisions based on 'trial and error' to informed therapeutics based on diagnostics (theranostics); a shift from a 'disease-centered' to a 'patient-centered' approach; and a shift from a 'reactive' to 'proactive' medical approach. It is essential that not only the physician, but also the patient, becomes proactive. Therefore, beyond the integration of genomic medicine and predictive biomarkers into practice, patient empowerment and participatory medicine are gaining increasing attention. This requires, besides appropriate sharing of information between patients and healthcare providers, new insights in patient involvement, such as patient-reported outcomes, both at the clinical trial stage of drug development and during post-marketing follow-up assessments. Patient empowerment and participatory medicine, as part of predictive, preventive, personalized and participatory medicine, are especially crucial in paving the way towards optimized healthcare in complex and chronic neurological diseases, such as multiple sclerosis.
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