Dataset Information

Experiences of persons with Multiple Sclerosis with lifestyle adjustment-A qualitative interview study.

ABSTRACT:

Background

Persons with Multiple Sclerosis (pwMS) follow individual strategies to cope with this highly heterogeneous disease. As surveys show, lifestyle habits play an important role in pwMS. However, little is known about individual experiences of pwMS with different lifestyle adjustment strategies.

Objective

This study aims to describe and understand individual experiences of pwMS with lifestyle adjustments.

Methods

Semi-structured interviews were conducted with 50 pwMS in Germany. Criteria for inclusion were age ≥ 18 years and a diagnosis of relapsing-remitting Multiple Sclerosis. Data were analyzed inductively and deductively according to a six-step thematic analysis.

Results

The three main themes for experience-based lifestyle adjustments were: 1) nutrition and supplements, 2) exercise and physical activity, and 3) stress management. Influencing factors on the decision-making process such as active disease management, information and advice, desire for mental health and social support, and the wish for self-determination were identified. Impacts of starting or maintaining lifestyle habits included, for example, MS-specific, general, and mental health benefits, the development of coping strategies, social support, and barriers that led to a termination of lifestyle adjustments.

Conclusion

This study provides a rich and nuanced amount of experiences of pwMS with lifestyle adjustments and leads to three important conclusions: 1) Further research is warranted to better describe the perceived effects of lifestyle habits on MS symptoms and progression, in particular with regard to nutrition and stress reduction; 2) patient education in MS should include the available evidence on lifestyle management and 3) patients need to be actively supported in changing their lifestyle behavior.

SUBMITTER: Elkhalii-Wilhelm S

PROVIDER: S-EPMC9140290 | biostudies-literature | 2022

REPOSITORIES: biostudies-literature

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Publications

Experiences of persons with Multiple Sclerosis with lifestyle adjustment-A qualitative interview study.

Elkhalii-Wilhelm Saskia S Sippel Anna A Riemann-Lorenz Karin K Kofahl Christopher C Scheiderbauer Jutta J Arnade Sigrid S Kleiter Ingo I Schmidt Stephan S Heesen Christoph C

PloS one 20220527 5

<h4>Background</h4>Persons with Multiple Sclerosis (pwMS) follow individual strategies to cope with this highly heterogeneous disease. As surveys show, lifestyle habits play an important role in pwMS. However, little is known about individual experiences of pwMS with different lifestyle adjustment strategies.<h4>Objective</h4>This study aims to describe and understand individual experiences of pwMS with lifestyle adjustments.<h4>Methods</h4>Semi-structured interviews were conducted with 50 pwMS ...[more]

PMID: 35622783

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Project description:ObjectiveLong-term adherence to evidence-based medications in cardiometabolic diseases remains poor, despite extensive efforts to develop and test interventions and deploy clinician performance incentives. The limited success of interventions may be due to ignored factors such as patients' experience of medication-taking. Despite being potentially addressable by clinicians, these factors have not been sufficiently explored, which is particularly important as patients use increasing numbers of medications. The aim is to explore patient perspectives on medication-taking, medication properties that are barriers to adherence, and coping strategies for their medication regimen.DesignIndividual, in-person, semistructured qualitative interviews.SettingUrban healthcare system.ParticipantsTwenty-six adults taking ≥2 oral medications for diabetes, hypertension or hyperlipidaemia with non-adherence. Interviews were digitally recorded and transcribed. Data were analysed using developed codes to generate themes. Representative quotations were selected to illustrate themes.ResultsParticipants' mean age was 55 years, 46% were female and 39% were non-white. Six key themes were identified: (1) medication-taking viewed as a highly inconvenient action (that patients struggle to remember to do); (2) negative implications because of inconvenience or illness perceptions; (3) actual medication regimens can deviate substantially from prescribed regimens; (4) certain medication properties (especially size and similar appearance with others) may contribute to adherence deviations; (5) development of numerous coping strategies to overcome barriers and (6) suggestions to make medication-taking easier (including reducing drug costs, simplifying regimen or dosing frequency and creating more palatable medications).ConclusionPatients with poor adherence often find taking prescription medications to be undesirable and take them differently than prescribed in part due to properties of the medications themselves and coping strategies they have developed to overcome medication-taking challenges. Interventions that reduce the inconvenience of medication use and tailor medications to individual needs may be a welcome development.

Project description:BackgroundModification of lifestyle-related risk factors for multiple sclerosis (MS) has been associated with improved health outcomes when compared with standard medical management alone. Based on an existing lifestyle modification program offered as a residential workshop, the MS Online Course (MSOC) was developed to translate the workshop into an online intervention. We performed a pilot randomized controlled trial (RCT), to assess the feasibility concepts of accessibility, learnability and desirability through quantitative and qualitative analyzes. In the present study, we performed additional qualitative analyzes to explore participants' motivations, expectations, and experiences of the MSOC. This study aims to complement prior feasibility analyzes and inform recruitment strategies and course content redevelopment so that its effectiveness may be assessed by examining behavior change and health outcomes in a future larger RCT.MethodsParticipants were recruited via online advertisements and randomized to either: the standard care course, containing material sourced from public facing MS websites; or the intervention course, based on an evidence-based lifestyle modification program for people with MS. Course completers were invited to participate in semi-structured interviews. Within a qualitative paradigm, reflexive thematic analysis of interviews was undertaken.ResultsOf 31 eligible participants, 17 completed the MSOC and 14 agreed to be interviewed. Four themes were identified in this analysis: (1) "Wanting to help others" (helping through volunteering, contributing to knowledge base, spreading the word; (2) "Seeking knowledge" (confirmation of existing knowledge; obtaining new knowledge, relevant, credible information); (3) "Doing what I can to help myself" (understanding lifestyle modification, changing my lifestyle, remaining well); and (4) "Changing attitudes" (finding positivity, feeling more confident and in control).ConclusionsParticipants were motivated to help others through research, help themselves by improving knowledge and to find ways to better manage their MS. Expectations included obtaining credible, reliable information, to substantiate existing knowledge, and to further understand lifestyle modification. Participants' experiences included confirmation of and obtaining new knowledge, and early implementation of modified lifestyle behaviors. These insights surrounding participants' motivations, expectations and experiences will assist in recruitment strategies, course redevelopment and outcome measures for the future RCT to examine the effectiveness of the MSOC.

Project description:BACKGROUND:Wearables, fitness apps, and patient home monitoring devices are used increasingly by patients and other individuals with lifestyle challenges. All Danish general practitioners (GPs) use digital health records and electronic health (eHealth) consultations on a daily basis, but how they perceive the increasing demand for lifestyle advice and whether they see eHealth as part of their lifestyle support should be explored further. OBJECTIVE:This study aimed to explore GPs' perspectives on eHealth devices and apps and the use of eHealth in supporting healthy lifestyle behavior for their patients and themselves. METHODS:A total of 10 (5 female and 5 male) GPs were recruited by purposive sampling, aged 38 to 69 years (mean 51 years), of which 4 had an urban uptake of patients and 6 a rural uptake. All of them worked in the region of Southern Denmark where GPs typically work alone or in partnership with 1 to 4 colleagues and all use electronic patient health records for prescription, referral, and asynchronous electronic consultations. We performed qualitative, semistructured, individual in-depth interviews with the GPs in their own office about how they used eHealth and mHealth devices to help patients challenged with lifestyle issues and themselves. We also interviewed how they treated lifestyle-challenged patients in general and how they imagined eHealth could be used in the future. RESULTS:All GPs had smartphones or tablets, and everyone communicated on a daily basis with patients about disease and medicine via their electronic health record and the internet. We identified 3 themes concerning the use of eHealth: (1) how eHealth is used for patients; (2) general practitioners' own experience with improving lifestyle and eHealth support; and (3) relevant coaching techniques for transformation into eHealth. CONCLUSIONS:GPs used eHealth frequently for themselves but only infrequently for their patients. GPs are familiar with behavioral change techniques and are ready to use them in eHealth if they are used to optimize processes and not hinder other treatments. Looking ahead, education of GPs and recognizing patients' ability and preference to use eHealth with regard to a healthy living are needed.

Dataset Information

Experiences of persons with Multiple Sclerosis with lifestyle adjustment-A qualitative interview study.

Background

Objective

Methods

Results

Conclusion

Publications

Experiences of persons with Multiple Sclerosis with lifestyle adjustment-A qualitative interview study.

Similar Datasets

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