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Taking active steps: Changes made by partners of people with multiple sclerosis who undertake lifestyle modification.

ABSTRACT: BACKGROUND:Multiple sclerosis (MS), a demyelinating condition of the central nervous system with an unpredictable course, has a major impact on the lives of people with MS. Partners of people with MS may be significantly affected by the diagnosis, management and uncertainty around disease progression and may provide substantial support and care. Modification of lifestyle risk factors in conjunction with standard medical management has been associated with improved physical and mental quality of life. Adopting major lifestyle modification may have a multi-faceted impact on the person with MS and their partner. Experiences of partners of people with MS have been previously explored, but the experiences of partners of people with MS who adopt this strategy have not. As part of a larger study that aimed to explore partners' lived experiences of and attitudes towards MS and lifestyle modification, this study reports the active steps and significant changes partners undertook to assist the person with MS and, at times, to also modify their own lives. DESIGN:Within an interpretive framework, using Heidegger's phenomenological philosophy, a qualitative study of semi-structured interviews was conducted. PARTICIPANTS:Aged greater than 18 years and in a spousal relationship with a person with MS who had undertaken an intensive residential lifestyle educational intervention promoting healthy lifestyle. RESULTS:Themes identified were: adjusting to lifestyle modification, understanding motivations and practical aspects of adjustment; seeking knowledge and support, exploring the ways partners sought positive support for themselves and the person with MS and abandoned negative influences; and embracing well-being, commitment and change, describing the major changes that partners made to their lives professionally and personally. CONCLUSIONS:The experiences of these partners provide clinicians with insight into potential motivations and outcomes of lifestyle modification and suggest potentially positive aspects for those directly and indirectly affected by MS.

SUBMITTER: Neate SL

PROVIDER: S-EPMC6394935 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:Introduction: Being in an intimate relationship with a person with multiple sclerosis (MS) may have a substantial impact on the partner's quality of life. Existing research has largely focused on negative impacts of MS for both people with MS (PwMS) and their partners and has sampled the population of partners of PwMS who have primarily adopted standard medical management only. Modifiable lifestyle factors have become increasingly recognized in the management of MS symptoms and disease progression. For partners of PwMS who have undertaken lifestyle modification as an additional strategy to minimize disease progression, the impacts, both positive and negative remain unexplored. This research is unique as it focuses on partners of PwMS who have attempted to adopt major lifestyle interventions outside of the prevailing paradigm of MS management. Aim: To explore and interpret the lived experiences of partners of PwMS who have adopted lifestyle modification, to understand partners' attitudes to and experiences of the effect of MS and lifestyle modification on their life, relationship and view of the future. Method: Design: a qualitative, interpretive, phenomenological study using semi-structured interviews. PARTICIPANTS:English-speaking; aged 18 years or more; in a spousal relationship for 12 months or more with a person with MS who had attended a residential lifestyle educational intervention and undertaken lifestyle modification. ANALYSIS:Interviews were recorded, transcribed verbatim and thematically analyzed using NVivo™ software. Results: Twenty-one partners were interviewed. This paper reports one of the study's themes, the psychological shift experienced by partners of PwMS. Sub-themes included adaptation; loss and grief; difficult emotions; reframing, re-evaluating and re-prioritizing; hope and optimism; empowerment and taking control; and self-awareness, greater understanding and personal growth. Conclusion: Partners of PwMS who have undertaken lifestyle modification experienced a broad range of psychological adjustments. Whilst reflecting the potential difficulties that partners of PwMS may experience, this group experienced a range of positive psychological changes that add to the literature regarding partners' potential experiences and may provide hope for those in partnerships with people with MS. This study provides themes to potentially inform a quantitative study of a larger population of partners of PwMS.

Project description:Objective: To report the methodology and summary data of the Health Outcomes and Lifestyle In a Sample of people with Multiple sclerosis (HOLISM) longitudinal and validation cohorts. We report (1) data on participation, socio-demographics, disease characteristics, medication use, modifiable lifestyle risk factor exposures, and health outcomes of the HOLISM longitudinal cohort 2.5-years post enrolment; (2) attrition at this 2.5-year wave; and (3) baseline characteristics of the associated HOLISM validation cohort. Methods: The HOLISM longitudinal study recruited people internationally with self-reported diagnosed multiple sclerosis (MS) through web 2.0 platforms and MS society newsletters. Participants, first recruited in 2012, were invited 2.5-years later to participate in a follow-up survey. At both time points, participants completed a comprehensive online questionnaire of socio-demographics, modifiable lifestyle exposures, and health outcomes using validated and researcher-designed tools. The same methodology was used to recruit a new sample: the HOLISM validation cohort. Characteristics were explored using summary measures. Results: Of 2,466 people with MS at baseline, 1,401 (56.8%) provided data at 2.5-year follow-up. Attrition was high, likely due to limited amount of contact information collected at baseline. Completion of the 2.5-year wave was associated with healthier lifestyle, and better health outcomes. Participants completing follow-up had diverse geographical location, were predominantly female, married, unemployed or retired. At 2.5-year follow-up, nearly 40% were overweight or obese, most were physically active, non-smokers, consumed little alcohol, used vitamin D/omega-3 supplements, and 42% reported current disease-modifying drug use. Thirty percentage of reported cane or gait disability, while 13% relied on major mobility supports (Patient Determined Disease Steps). Approximately half the respondents reported a comorbidity, 63% screened positive for clinically significant fatigue (Fatigue Severity Scale), and 22% screened positive for depression (Patient Health Questionnaire-9). The validation cohort's characteristics were mostly consistent with previously reported HOLISM baseline data. Conclusions: Exploring prospective associations of modifiable environmental/behavioral risk factors with health outcomes in this international longitudinal sample of people with MS will be beneficial to MS research. Impacts of attrition and selection bias will require consideration. The validation cohort provides opportunity for replication of previous findings, and also for temporal validation of predictive models derived from the HOLISM cohort.

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Taking active steps: Changes made by partners of people with multiple sclerosis who undertake lifestyle modification.

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