The following is an ethnographic study of a multiple sclerosis (MS) support group. This study underscores the importance of access to counternarratives for individuals with chronic illness and disabilities through organizational structures such as support groups. This work can help those with disabilities/chronic diseases, such as MS, because it provides a space for discussing the communicative forces that shape individual experiences of living with disability and chronic illness. Thus, this study seeks to understand how pharmaceutical representatives' and doctors' grand medical narratives influence the communication of MS support group attendees and their construction/performance of self. This study shows that participation in support groups provides a space to renegotiate identity in which new forms of self can develop external to the dominant discourse. The support group becomes a space where counternarratives of empowerment develop in the face of master narratives.
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http://dx.doi.org/10.4081/qrmh.2024.12175 | DOI Listing |
JMIR Form Res
January 2025
Private Practice, Ballito, South Africa.
Background: Barriers to mental health assessment and intervention have been well documented within South Africa, in both urban and rural settings. Internationally, evidence has emerged for the effectiveness of technology and, specifically, app-based mental health tools and interventions to help overcome some of these barriers. However, research on digital interventions specific to the South African context and mental health is limited.
View Article and Find Full Text PDFJMIR Hum Factors
January 2025
Women's Health Research Institute, Vancouver, BC, Canada.
Background: Digital health innovations provide an opportunity to improve access to care, information, and quality of care during the perinatal period, a critical period of health for mothers and infants. However, research to develop perinatal digital health solutions needs to be informed by actual patient and health system needs in order to optimize implementation, adoption, and sustainability.
Objective: Our aim was to co-design a research agenda with defined research priorities that reflected health system realities and patient needs.
Neurology
February 2025
Department of Neurology and Center of Clinical Neuroscience, First Medical Faculty, General University Hospital and Charles University, Prague, Czech Republic.
Background And Objectives: Patients with multiple sclerosis (MS) may demonstrate better disease control when treatment is initiated on high-efficacy disease-modifying therapies (DMTs) from onset. This subgroup analysis assessed the long-term efficacy and safety profile of the high-efficacy DMT ocrelizumab (OCR) as first-line therapy for early-stage relapsing MS (RMS).
Methods: Post hoc exploratory analyses of efficacy and safety were performed in a subgroup of treatment-naive patients with RMS who received ≥1 dose of OCR in the multicenter OPERA I/II (NCT01247324/NCT01412333) studies.
Neurology
February 2025
From the Temple University College of Public Health (I.L.H.); Thomas Jefferson University (G.G.); and Department of Neurology (T.D.H.-P.), Lewis Katz School of Medicine at Temple University, Philadelphia, PA.
Background And Objectives: Clinical care for people living with amyotrophic lateral sclerosis (PLWALS) is directed at slowing disease progression and symptom management. The American Academy of Neurology recommends a multidisciplinary approach to providing ALS health care because observational studies show that multidisciplinary clinics (MDCs) extend survival and improve quality of life. However, providing multidisciplinary care is a challenging financial proposition.
View Article and Find Full Text PDFNeurology
February 2025
Department of Medicine and Geriatrics, Tuen Mun Hospital, Hong Kong, People's Republic of China.
Background And Objectives: Mitochondrial disorders are multiorgan disorders resulting in significant morbidity and mortality. We aimed to characterize death-associated factors in an international cohort of deceased individuals with mitochondrial disorders.
Methods: This cross-sectional multicenter observational study used data provided by 26 mitochondrial disease centers from 8 countries from January 2022 to March 2023.
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