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.

Shaping understandings through reflexive practice: Learnings from participatory research on aging with multiple sclerosis.

BACKGROUND: Participatory research has gained traction as an approach to unlock perspectives when creating scientific knowledge and to facilitate societal changes. By conducting research with people, participatory research strives to engage individuals' perspectives in designing, conducting, and disseminating the research. Nevertheless, few studies have unpacked how understandings of the studied phenomenon are shaped among diverse research partners and, concurrently, how different perspectives are combined. Nested within an overall participatory mixed methods study on aging with multiple sclerosis (MS), this qualitative study explores how understandings of aging with MS are shaped in encounters between university researchers, older adults with MS, and employees in a patient association. METHODS: The study was collaboratively conducted in Denmark by three research partners: a group of older adults with MS, employees in a patient association, and university researchers. Data on how different understandings of aging with MS were represented and shaped during the three-year research process was generated through field notes, meeting minutes, focus group interviews, and individual interviews. The collected data was analyzed through a thematic network analysis. RESULTS: The study demonstrates how different understandings of aging with MS were represented among the research partners when the research was initiated. These understandings were shaped prior to -and, therefore, outside-the research setting, drawing from the research participants' lived experiences, professional backgrounds, and organizational cultures or situated in larger societal narratives. Through a process centered on reflexivity among the engaged research partners, the understandings of what it means to age with MS was shaped and re-shaped and eventually merged into a more dynamic understanding of later life with MS where different perspectives could co-exist. CONCLUSION: The findings demonstrate that research partners, including older adults with MS and employees from a patient association, brought diverse understandings to the study. Reflexive practices enabled these perspectives to co-exist, enhancing engagement and transparency, and fostering a dynamic understanding of later life with MS. This highlights the value of reflexivity in evolving complex understandings within participatory research.

In recent years, participatory research has been increasingly utilized in various research fields (e.g., aging research) with the ambition of engaging a diverse group of research partners to leverage their perspectives and contributions. This approach aims to form a more nuanced understanding of the studied phenomenon and to identify insights useful for practice However, working in diverse research teams have also been found to be complex, and it is poorly understood how the perceptions of the different research partners shape the final research product. Based on a study conducted in collaboration with employees in a patient association, older adults with multiple sclerosis (MS), and university researchers, the present study aims to unfold how perspectives of aging with MS are represented and shaped doing a participatory research period. It occurred over a three-year period where data was collected through field notes, meeting minutes, focus group interviews, and individual interviews. The findings highlight how research partners represent different understandings of the studied phenomenon, which is embedded in their social, cultural, and professional background and which potentially influence their expectations of and contributions to the research process. Furthermore, the study demonstrates how engaging in a critical dialogue about expectations and understanding of the studied phenomenon can provide insight into which perceptions are represented, making the participatory research process more transparent. Lastly, the study conveys how such critical dialogue facilitates understandings and perspectives evolving during the research process into a potentially more dynamic understanding of the studied phenomenon.

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.