Unfolding biographies-a participatory narrative study on how older adults with multiple sclerosis make sense of and manage their everyday lives.

BACKGROUND: Today, public health research on later life, including the literature on aging with multiple sclerosis, is often centered on aging as a biological phenomenon. By applying a participatory narrative approach, this study conveys how studying biographical aging provides important insights into the elements of aging that people find relevant and meaningful. Based on narratives told by older adults living with multiple sclerosis, we explore how sensemaking unfolds and shapes the management of later life with a chronic and progressive disease. METHODS: Twenty-four older adults (aged 65 years or older) living with multiple sclerosis in Denmark were engaged in taking photographs of their everyday lives and unfold the stories framed in their photographs in subsequent narrative interviews. Interview data were analyzed using a thematic narrative analysis. Aligned with the narrative approach, the findings of the analysis are presented using five cases chosen because they provide insight into the general patterns and themes identified across the narratives of the 24 participants. RESULTS: Based on their photographs, the participants narrated stories centered around what they perceived as meaningful activities and social identity when aging with a progressive disease. Three themes emerged from the analysis in relation to how participants made sense of and managed aging with multiple sclerosis: 1) a life woven by non-detachable life experiences, 2) envisioning the future and 3) challenging life circumstances. CONCLUSION: The findings of the study highlight that aging with multiple sclerosis is not only a biological phenomenon but also something nested in people's biographies. How people make sense of and manage their everyday lives is shaped by strategies from all parts of their lives-past, present and future. This understanding of later life with multiple sclerosis may enhance the care offered to older adults living with multiple sclerosis if greater emphasis is placed on the exploration of their narratives and the things they find meaningful.

Social relations and leisure activities as predictors of wellbeing among older adults with multiple sclerosis: A cross-sectional survey study in Denmark.

BACKGROUND: Due to the growing number of people aging with multiple sclerosis (MS), there has been a call for rehabilitation specially targeted older adults with MS in order to support them in better wellbeing, despite physical and cognitive impairment. However, the existing research within the area of rehabilitation has primarily focused on the physical and psychological aspects of aging with MS, omitting the social element. OBJECTIVE: This study aims to examine how social relations and engagement in leisure activities predict wellbeing among older adults with MS living in Denmark. Furthermore, the study aims to identify which sociodemographic and health-related factors are the most important in predicting whether older adults with MS face challenges in participating in leisure activities and experiencing different kinds of social relations. METHOD: A cross-sectional survey was designed to measure social relations, wellbeing, and engagement in leisure activities among older adults with MS. Of the 4,329 people over 65 years diagnosed with MS in Denmark in 2022, 2,574 (59.46%) were invited to participated in the study, and 1,107 (43.03%) ended up answering the survey. Linear and logistic regression analyses and dominance analyses were conducted to examine the associations between wellbeing, leisure activities, social relations, sociodemographic and health-related factors. RESULTS: The results of the study show that perceived emotional social support (mean difference 8.69, 95% CI 5.23; 12.14) and perceived instrumental social support (mean difference 4.15, 95% CI 0.95; 7.35), were associated with better wellbeing among older adults with MS. Perceived strained social relations (mean difference -7.95, 95% CI -10.66; -5.26) were on the contrary associated with lower levels of wellbeing. Strained social relations were the most important predictors of wellbeing accounting for 59% of the predicted variance. Experiencing social emotional support from friends, coworkers, or neighbors (39% of the predicted variance), experiencing instrumental social support from children or children in law (43% of the predicted variance), and experiencing strained social relations with partner (48% of the predicted variance) constituted he most important predictor of wellbeing. Engagement in five out of fourteen leisure activities were associated with better wellbeing among the participants. The leisure activities there was found to be the most important predictor of wellbeing represented both social (37% of the predicted variance), physical (18% of the predicted variance), and creative elements (13% of the predicted variance). Finally, cohabitation was found to be the most important predictor of having perceived emotional social support (59% of the predicted variance), instrumental social support (78.9% of the predicted variance) and strained social relations (18.8% of the predicted variance) and mobility was found to be the most important predictor of challenges in participating in leisure activities (81.8% of the predicted variance). CONCLUSION: The findings of the study highlight that rehabilitation targeting older adults with MS should focus on both physical, psychological, and social elements of peoples' everyday life. Further, the results indicate that future rehabilitation focusing on social elements of aging with MS should take into account health and sociodemographic characteristics such as cohabitation, mobility, age, and sex, as these potentially relate to participation in leisure activities as well as social relations among older adults.

"I need personal experiences or some sort of documentation": a qualitative study on where people with multiple sclerosis seek information on dietary and herbal supplements.

BACKGROUND: The use of dietary and herbal supplements (DIHES) is widespread among people with multiple sclerosis (PwMS). PwMS are a highly informed patient group, and they use several types of sources to seek information on subjects related to their disease. However, it is still unknown where PwMS seek information about DIHES. It is important that PwMS make decisions about DIHES based on accurate, useful and accessible information. Therefore, the aim of this study was to explore where PwMS seek information on DIHES and how they experience and engage with this information. METHODS: Semi-structured interviews were conducted with eighteen PwMS using DIHES. Participants were selected from a cross-sectional survey. Diversity sampling was used, based on relevant characteristics such as gender and number of DIHES used during the past 12 months. The interviews were conducted face-to-face or over the telephone and lasted between 30 min and 1 hour. The interviews were recorded, transcribed verbatim, and analyzed using thematic network analysis in NVivo 12 Pro software. RESULTS: Three main themes emerged in the analysis: i) engaging with healthcare professionals (HCPs) regarding DIHES, ii) social networks as a source of information regarding DIHES, and iii) reliance on bodily sensations. Most participants navigated all three types of sources. All participants had at some point discussed DIHES with an HCP. Information from HCPs was considered reliable and valuable, but HCPs were viewed as uncommitted to the dialogue about DIHES. Recommendations from others were often the driver of decisions regarding use of DIHES. However, the information from PwMS' networks could be overwhelming and difficult to navigate. Finally, PwMS relied on their own experiences regarding DIHES and let their bodily sensations guide their use of DIHES. CONCLUSIONS: Participants often rely on all three types of information sources to create a nuanced and comprehensive information base. However, PwMS may feel overwhelmed or confused with all the information they have gathered. These findings indicate the need for better guidance for PwMS concerning DIHES and an openness among HCPs to engage in dialogue.

A systematic review of possible interactions for herbal medicines and dietary supplements used concomitantly with disease-modifying or symptom-alleviating multiple sclerosis drugs.

Multiple Sclerosis (MS) is a demyelinating disease affecting the central nervous system, with no curative medicine available. The use of herbal drugs and dietary supplements is increasing among people with MS (PwMS), raising a need for knowledge about potential interactions between conventional MS medicine and herbal drugs/dietary supplements. This systematic review provides information about the safety of simultaneous use of conventional MS-drugs and herbal drugs frequently used by PwMS. The study included 14 selected disease-modifying treatments and drugs frequently used for symptom-alleviation. A total of 129 published papers found via PubMed and Web of Science were reviewed according to defined inclusion- and exclusion criteria. Findings suggested that daily recommended doses of Panax ginseng and Ginkgo biloba should not be exceeded, and herbal preparations differing from standardized products should be avoided, especially when combined with anticoagulants or substrates of certain cytochrome P450 isoforms. Further studies are required regarding ginseng's ability to increase aspirin bioavailability. Combinations between chronic cannabis use and selective serotonin reuptake inhibitors or non-steroidal antiinflammatory drugs should be carefully monitored, whereas no significant evidence for drug-interactions between conventional MS-drugs and ginger, cranberry, vitamin D, fatty acids, turmeric, probiotics or glucosamine was found.

Potentials and barriers of using digital tools for collecting daily measurements in multiple sclerosis research.

OBJECTIVE: Digital tools offer new ways of collecting outcome data in intervention research. Little is known about the potentials and barriers of using such tools for outcome measurement in multiple sclerosis trials. This study aimed to examine reporting adherence and barriers experienced by people with multiple sclerosis in an intervention study using three different digital tools for outcome measurement. METHODS: This was a mixed-methods study conducted in the context of a randomized controlled trial. Data collected during the randomized controlled trial were analysed to assess reporting adherence. Twenty-three semi-structured, in-depth interviews were conducted to investigate randomized controlled trial participants' experiences. RESULTS: Reporting adherence was high for all three measurement tools, but lower in the control group. Four main barriers were defined: (1) the self-monitoring aspect and repeated tests imbedded in the digital tools affected participants' behavior during the randomized controlled trial. (2) Self-monitoring caused some participants to worry more about their health. (3) Passively collected data did not always correspond with participants' own experiences, which caused them to question the validity of the collected data. (4) Daily reporting using different digital tools placed a significant burden on participants. CONCLUSION: The study indicates a high reporting adherence using digital tools among people with multiple sclerosis. However, future studies should carefully consider the overall burden imposed on participants when taking this approach. Measures should be taken to avoid the potential unintended effects of the self-monitoring and gamification aspects of using digital tools. These measures could include passive monitoring, reducing the frequency of reporting and blinding participants to their own data.