Managing communication changes in persons with multiple sclerosis: Findings from qualitative focus groups.
Ontology highlight
ABSTRACT:
SUBMITTER: El-Wahsh S
PROVIDER: S-EPMC9311724 | biostudies-literature | 2022 May
REPOSITORIES: biostudies-literature
Publications
Managing communication changes in persons with multiple sclerosis: Findings from qualitative focus groups.
El-Wahsh Sarah S Balandin Susan S Bogaardt Hans H Kumfor Fiona F Ballard Kirrie J KJ
International journal of language & communication disorders 20220326 3
<h4>Background</h4>There is growing recognition that communication can be affected in multiple sclerosis (MS) and can negatively impact relationships, employment and psychological well-being. Some persons with MS (PwMS) implement strategies to facilitate their communication; however, some do not. Most PwMS who report communication changes do not engage with speech-language pathology (SLP) services. This raises concerns that a large portion of communication changes associated with MS go under-rec ...[more]
Similar Datasets
Project description:IntroductionCommunication interventions are widely used to promote childhood vaccination and sustain vaccine acceptance, but communication's role in changing people's beliefs and behaviours is not well understood. To determine why these interventions work or where they fail, evaluations must measure a range of outcomes in addition to vaccination uptake. As part of a larger project to develop a preliminary Core Outcome Set for vaccination communication, we conducted a qualitative focus group study exploring how parents and health professionals perceive and experience communication encounters and what outcomes are relevant to them.MethodsFocus group participants included parents and health professionals involved in vaccination communication (healthcare providers, researchers and policymakers). Participants discussed their experiences with communication for childhood vaccination, and what made the communication 'successful' or 'unsuccessful.' Our analysis involved two stages: first, we thematically analysed the discussions, identifying key parent and professional themes. In stage two, we used an interpretive analysis approach to translate the themes and quotes into measurable outcomes. We compared these outcomes with outcomes measured in vaccination communication trials (previously identified and mapped).ResultsWe held three focus groups with parents (n = 12) and four with professionals (n = 19). In stage one, we identified six parent themes (primarily related to decision-making) and five professional themes (primarily related to intervention planning, delivery and evaluation). In stage two, we translated 47 outcomes from parents and 73 from professionals (91 total, de-duplicated). All stakeholders discussed attitudes or beliefs and decision-making outcomes most frequently. Most (66%) of the focus group-generated outcomes were not measured in vaccination communication trials.ConclusionConsulting with stakeholders through focus groups allowed us to explore how parents and professionals experienced vaccination communication, identify those aspects of the experience that were important to them, and translate these into outcomes that can be prioritised into a Core Outcome Set and measured in intervention evaluations.
| S-EPMC6070264 | biostudies-literature
Project description:BackgroundShifts in treatment strategies for rheumatoid arthritis (RA) have made ambulatory care more labour-intensive. These developments have prompted innovative care models, including mobile health (mHealth) applications. This study aimed to explore the perceptions of mHealth-inexperienced stakeholders concerning these applications in RA care.MethodsWe performed a qualitative study by focus group interviews of stakeholders including RA patients, nurses specialised in RA care and rheumatologists. The qualitative analysis guide of Leuven (QUAGOL), which is based on grounded theory principles, was used to thematically analyse the data. In addition, the Persuasive Systems Design (PSD) model was used to structure recommended app-features.ResultsIn total, 2 focus groups with nurses (total n = 16), 2 with patients (n = 17) and 2 with rheumatologists (n = 25) took place. Six overarching themes emerged from the analysis. Efficiency of care and enabling patient empowerment were the two themes considered as expected benefits of mHealth-use in practice by the stakeholders. In contrast, 4 themes emerged as possible barriers of mHealth-use: the burden of chronic app-use, motivational aspects, target group aspects, and legal and organisational requirements. Additionally, recommendations for an ideal mHealth-app could be structured into 4 domains (Primary Task Support, Dialogue Support, Social Support and System Credibility) according to the PSD-framework. Most recommended features were related to improving ease of use (Task Support) and System Credibility.ConclusionsAlthough mHealth-apps were expected to improve care efficiency and stimulate patient empowerment, stakeholders were concerned that mHealth-app use could reinforce negative illness behaviour. For mHealth-apps to be successful in practice, challenges according to stakeholders were avoiding long-term poor compliance, finding the target audience and tailoring a legal and organisational framework. Finally, the ideal mHealth-application should above all be trustworthy and easy to use.
| S-EPMC8406841 | biostudies-literature
Project description:BackgroundManaging multiple sclerosis (MS) includes different treatment approaches. Rehabilitation is a key strategy in MS for improving functioning, activity and participation. As part of a larger study on overall patient experiences with different treatment approaches, this study aims to give an overview of different patients' experiences and perspectives on inpatient rehabilitation in MS.MethodsWe conducted problem-centered interviews in 50 persons with MS in Germany, of whom most had relapsing-remitting MS. We used the maximum variation sampling method during recruitment. Data were analyzed thematically.ResultsAs a result of the analysis, three major themes were identified: 1) factors contributing to the decision-making concerning rehabilitation, 2) experience with the rehabilitation setting, 3) benefits of rehabilitation treatments. The treating physicians' attitude had a major impact on the decision to either opt for rehabilitation or not. Setting goals prior to rehabilitation was given a high priority. Exchanging experiences with other persons with MS presented a major benefit from rehabilitation while for some being separated from regular daily life resulted in a more ambiguous attitude ranging from appreciation of escaping daily hassles to substantial behavioral change management.ConclusionPatients reported various experiences in the process of decision-making with regard to rehabilitation. Physicians´ advice, goal setting and the selection of the most suitable rehabilitation clinic were considered most relevant.
| S-EPMC9188711 | biostudies-literature
Project description:BackgroundPersons 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.ObjectiveThis study aims to describe and understand individual experiences of pwMS with lifestyle adjustments.MethodsSemi-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.ResultsThe 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.ConclusionThis 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.
| S-EPMC9140290 | biostudies-literature
Project description:BackgroundDisease progression in multiple sclerosis (MS) is highly variable and predicting prognosis is notoriously challenging. Patients' prognosis beliefs, responses to prognostic uncertainty and experiences of prognosis-related communication with healthcare professionals (HCPs) have received little study. These issues have implications for patients' psychological adjustment and are important in the context of the recent development of personalised prognosis forecasting tools. This study explored patient perspectives on the experience of prognostic uncertainty, the formation of expectations about personal prognosis and the nature of received and desired prognosis communication.Methods15 MS patients participated in in-depth semi-structured interviews which were analysed using inductive thematic analysis.ResultsSix themes captured key aspects of the data: Experiencing unsatisfactory communication with HCPs, Appreciating and accepting prognostic uncertainty, Trying to stay present-focused, Forming and editing personal prognosis beliefs, Ambivalence towards forecasting the future, and Prognosis information delivery. MS patients report having minimal communication with HCPs about prognosis. Over time MS patients appear to develop expectations about their disease trajectories, but do so with minimal HCP input. Provision of prognosis information by HCPs seems to run counter to patients' attempts to remain present-focused. Patients are often ambivalent about prognosis forecasting and consider it emotionally dangerous and of circumscribed usefulness.ConclusionsHCPs must carefully consider whether, when and how to share prognosis information with patients; specific training may be beneficial. Future research should confirm findings about limited HCP-patient communication, distinguish predictors of patients' attitudes towards prognostication and identify circumstances under which prognostic forecasting benefits patients.
| S-EPMC4951148 | biostudies-literature
Project description:BackgroundCognitive dysfunction is prevalent in multiple sclerosis (MS) and can have a negative effect on several aspects of the daily lives of individuals with MS. In 2010, members of the Consortium of Multiple Sclerosis Centers (CMSC) were surveyed to understand MS clinicians' screening, assessment, and treatment practices for cognitive problems. Given the advancements made in the field in the past decade, it was deemed time to reevaluate how cognitive dysfunction is managed in the clinical setting.MethodsAn online questionnaire was completed by 56 CMSC members. They were asked to describe their clinical practices, procedures for screening and further evaluation, and treatment recommendations for cognitive dysfunction. Participants were also asked whether their practice had changed in terms of the number of cognitive screenings, prescriptions for cognitive problems, and referrals for neuropsychological assessment and cognitive remediation in the past 5 years to allow for clinicians who had not been in practice for 10 years.ResultsParticipants reported an increase in the number of cognitive screenings and referrals for neuropsychological assessments and cognitive remediation during the past 5 years. Compared with 2010, participants endorsed greater use of person-administered screening measures, such as the Symbol Digit Modalities Test, and fewer prescriptions for medications to improve cognitive functioning.ConclusionsClinical practices are becoming more in line with the literature, with increased use of cognitive screening and remediation. Continued attention to cognitive problems will be an ongoing important component of MS-related care.
| S-EPMC9135367 | biostudies-literature
Project description:BackgroundThere are approximately 1 million adults in the United States with multiple sclerosis (MS). Persons with MS are interested in diet as a second-line therapy for improving MS symptoms and disease progression. Examination of desired resources regarding diet among persons with MS is necessary for supporting behavior change.MethodsTwenty-five adults with MS completed 1-on-1, online semistructured interviews. An inductive, 6-phase, semantic thematic analysis was applied to identify themes associated with participant preferences for dietary behavior change.ResultsThe research team crafted 4 key themes from the data that encompassed participants' desired resources for dietary behavior change. Theme 1, MS-specific evidence, involved the need for clear information about the impact of diet regimens or specific foods on MS. Theme 2, dietary guidelines, was related to guidelines provided by a reliable source such as a registered dietitian. Theme 3, behavioral supports, underscored the need for support for behavior change, including accountability, self-monitoring, motivation, habituation, and incremental changes. Theme 4, diet resources, highlighted tangible resources for supporting dietary change, including recipes, food lists, meal services, or games.ConclusionsThis study provides a foundation for guiding dietary interventions for persons with MS that incorporates their needs and preferences and could improve their overall health. Such dietary change can be facilitated by theory-based behavioral interventions that incorporate behavior change techniques such as self-monitoring and goal setting for supporting behavior change.
| S-EPMC9296057 | biostudies-literature
Project description:The autoimmune disease multiple sclerosis (MS) is characterized by relapses in the majority of patients. A definitive clinical diagnosis of relapse in MS can be complicated by the presence of an infection or comorbid disorder. In this mini-review, we describe efforts to develop enhanced imaging techniques and biomarker detection as future tools for relapse validation. There is emerging evidence of roles for meningeal inflammation, sex hormones, comorbid metabolic or mood disorders, and a dysregulated immune profile in the manifestation and severity of relapse. Specific subsets of immune cells likely drive the pathophysiology of relapse, and identification of a patient's unique immunological signature of relapse may help guide future diagnosis and treatment. Finally, these studies highlight the diversity in terms of relapse presentation, immunological signature, and response in patients with MS, indicating that going forward the best approach to assessment and treatment of relapse will be multifactorial and highly personalized.
| S-EPMC5372802 | biostudies-other
Project description:BACKGROUND: Treatment of multiple sclerosis (MS) with disease-modifying drugs (DMDs) can reduce relapse frequency and delay disability progression. Although adherence to DMDs is difficult to measure accurately, evidence suggests that poor adherence is common and can compromise treatment success. There are likely to be multiple factors underlying poor adherence. To better understand these factors, the global MS Choices Survey investigated patient and physician perspectives regarding key aspects of MS diagnosis, treatment adherence and persistence, and disease management. METHODS: The survey was conducted in seven countries and involved patients with MS (age 18-60 years; MS diagnosis for ≥1 year; current treatment with a DMD) and physicians (neurologist for 3-30 years; treating ≥15 patients with MS per average month; >60% of time spent in clinical practice). Separate questionnaires were used for physicians and patients, each containing approximately 30 questions. RESULTS: Questionnaires were completed by 331 patients and 280 physicians. Several differences were observed between the responses of patients and physicians, particularly for questions relating to treatment adherence. Overall, the proportion of patients reporting taking a treatment break (31%) was almost twice that estimated by physicians (on average 17%). The reasons cited for poor adherence also differed between patients and physicians. For example, more physicians cited side effects as the main reason for poor patient adherence (82%), than responding patients (42%). CONCLUSIONS: Physicians may underestimate the scale of poor adherence to DMDs, which could impact on their assessment of treatment efficacy and result in inappropriate treatment escalation. In addition, disparities were identified between patient and physician responses regarding the underlying reasons for poor adherence. Improvements in the dialog between patients and neurologists may increase adherence to DMDs.
| S-EPMC3259078 | biostudies-other
Project description:The progesterone derivative allopregnanolone (ALLO) is one of the most widely studied compounds among neurosteroids. Through interactions with GABA-A receptors expressed by neurons and glial cells, ALLO has been shown to affect diverse aspects of neural cell physiology, including cell proliferation and survival, migration, and gene expression. Recent data point to important roles for ALLO in different neurodegenerative disorders, including Alzheimer's disease, Parkinson's disease, and multiple sclerosis (MS). Dysregulation in ALLO biosynthesis pathways has been reported in brain tissue from MS patients as well as in the central nervous system (CNS) tissue derived from MS animal models. Administration of ALLO has been shown to ameliorate neurobehavioral deficits together with neuropathology and inflammation in the CNS of animals with autoimmune demyelination. These findings are in line with previous reports indicating growth- and differentiation-promoting actions of ALLO on neurons and glial cells as well as its neuroprotective effects in the context of other CNS diseases. Nonetheless, these findings have also raised the possibility that ALLO might influence leukocyte biology and associated neuroinflammatory mechanisms independent of its neuroregenerative properties. Herein, we review the current knowledge regarding the role of ALLO in the pathogenesis of MS, and discuss the potential cellular and molecular pathways that might be influenced by ALLO in the context of disease.
| S-EPMC4042158 | biostudies-literature