Self‐reported behaviour change among multiple sclerosis community members and interested laypeople following participation in a free online course about multiple sclerosis

2021 ◽  
Author(s):  
Suzi B. Claflin ◽  
Casey Mainsbridge ◽  
Julie Campbell ◽  
Shannon Klekociuk ◽  
Bruce V. Taylor
Keyword(s):  
Multiple Sclerosis ◽  
Behaviour Change ◽  
Online Course ◽  
Community Members

The Experience of Participating in an 8-Week Mindfulness Based Stress Reduction plus Sleep Retraining Course among Women Living with Multiple Sclerosis

2020 ◽  
pp. 105477382095812
Author(s):  
Loralee Sessanna ◽  
Patricia Nisbet ◽  
Nouf Alanazi ◽  
Deborah Lorissaint ◽  
Samantha L. Auerbach ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Stress Reduction ◽  
Daily Basis ◽  
Course Delivery ◽  
Online Course ◽  
Adult Women ◽  
Analysis Method ◽  
Delivery Format ◽  
Qualitative Descriptive ◽  
Course Delivery Format

Adult women with multiple sclerosis (MS) can benefit from innovative mindfulness-based interventions designed and structured with understanding and consideration of the multifaceted challenges these women face on a daily basis. The purpose of this qualitative descriptive study was to explore the experience of participating in an online or traditional onsite 8-week, once a week, Mind Body Stress Reduction combined with Sleep Retraining course among women living with MS to establish online course acceptability. Braun and Clarke’s Reflexive Thematic Analysis method was used to analyze focus group interview data. Time and length for both courses was found acceptable, camaraderie and interconnectedness were essential, having choice regarding course delivery format was important, and being provided with organized learning materials at the course start in a binder or packet was considered imperative. Acceptability was established for both the online and onsite formats.

scholarly journals Social and Behaviour Change Communication Intervention Improves Coverage and Acceptance of Ivermectin Mass Drug Administration in Onchocerciasis Endemic Communities in Ghana: A Quasi Experimental Design

2021 ◽  
Author(s):  
Francis Adjei Osei ◽  
Sam Newton ◽  
Isaac Nyanor ◽  
Eugene Osei-Yeboah ◽  
Evans Xorse Amuzu ◽  
...  
Keyword(s):  
Behaviour Change ◽  
Drug Administration ◽  
Mass Drug Administration ◽  
Uptake Rate ◽  
Drug Distribution ◽  
Total Sample ◽  
Behaviour Change Communication ◽  
Community Members ◽  
Major Barrier ◽  
Change Communication

Abstract BackgroundPoor community awareness and social mobilization serve as a major barrier by increasing absenteeism and downplaying the relevance of the ivermectin mass distribution by community members. Inadequate awareness also creates confusion among community members especially when one intervention is mistaken for the other. MethodsWe designed a targeted Social and Behaviour Change Communication (SBCC) intervention with clearly defined and tailored messages of ivermectin MDA program targeting onchocerciasis in endemic communities in Ghana. Quasi experiment was conducted with a total sample size of 2008 at baseline and 2113 at endline. ResultsAt baseline, 63.9% respondents did not receive Ivermectin during the previous year (2019) MDA programme and more than half of them (53.3%) were not aware of the drug distribution. The communities that received the intervention at endline revealed a significantly higher increase in coverage (SATT=0.123, 95% CI=0. 0.073, 0.173, p<0.001). At baseline, uptake rate of 91.0% was recorded. Post the intervention, there was an increase in the proportion of respondents who ingested the MDA drugs (ivermectin) from 91.0% to 95.45%. Previous uptake of MDA drugs (AOR=10.67; 95%CI: 5.59-20.38, p<0.001), Perceived benefit of MDA drug (AOR=4.13; 95%CI: 1.69-10.15, p<0.001) and being aware of the MDA programme (AOR=2.28; 95%CI: 1.00-5.02, p=0.049) was associated with improved receipt of Ivermectin. ConclusionThe findings of this study reveal that SBCC intervention improves ivermectin coverage and uptake rate in mass drug administration. Further research with technological innovations which can enhance SBCC is recommended taking hind sight of the limitations of the study due to the COVID-19 pandemic.

scholarly journals Individualised behaviour change strategies for physical activity in multiple sclerosis (IPAC-MS): protocol for a randomised controlled trial

Trials ◽  
2019 ◽  
Vol 20 (1) ◽  
Author(s):  
Farren L. Goulding ◽  
Charity D. Evans ◽  
Katherine B. Knox ◽  
Hyun J. Lim ◽  
Michael C. Levin ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Multiple Sclerosis ◽  
Randomised Controlled Trial ◽  
Behaviour Change ◽  
Controlled Trial ◽  
Activity Level ◽  
Change Strategies ◽  
Randomised Controlled

Abstract Background Multiple sclerosis (MS) is a chronic, degenerative disease of the central nervous system. Because of the long-term and unpredictable nature of the disease, the burden of MS is significant from both a patient and societal perspective. Despite a recent influx of disease-modifying therapies to treat MS, many individuals continue to experience disability that negatively affects productivity and quality of life. Previous research indicates that physical activity has a positive impact on walking function in individuals with MS, in addition to the usual beneficial effects on overall health. However, most people with MS are not active enough to gain these benefits, and a lack of support to initiate and maintain physical activity has been identified as a major barrier. This study will evaluate the impact of a novel intervention involving individualised behaviour change strategies delivered by neurophysiotherapists on increasing physical activity levels in individuals with MS who are currently inactive. Methods/design This single-blind, parallel-group, randomised controlled trial will be conducted in Saskatchewan, Canada. Eligible participants include individuals with MS who are ambulatory but identified as currently inactive by the self-reported Godin Leisure-Time Exercise Questionnaire (GLTEQ). The intervention will be delivered by neurophysiotherapists and includes individualised behaviour change strategies aimed at increasing physical activity over a 12-month period. The control group will receive usual care during the 12-month study period. The primary outcome is the change in physical activity level, as measured by the change in the GLTEQ score from baseline to 12 months. Secondary outcomes include the change in patient-reported outcome measures assessing MS-specific symptoms, confidence and quality of life. Discussion Physical activity has been identified as a top research priority by the MS community. Findings from this novel study may result in new knowledge that could significantly impact the management and overall health of individuals with MS. Trial registration ClinicalTrials.gov, NCT04027114. Registered on 10 July 2019.

Evaluating course completion, appropriateness and burden in the Understanding Multiple Sclerosis massive open online course (Preprint)

2020 ◽  
Author(s):  
Suzi B. Claflin ◽  
Julie A. Campbell ◽  
Kathleen Doherty ◽  
Maree Farrow ◽  
Barnabas Bessing ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Course Completion ◽  
University Education ◽  
Online Course ◽  
Massive Open Online ◽  
Chi Square ◽  
Participant Engagement ◽  
Massive Open Online Course ◽  
Fit For Purpose ◽  
Participant Education

BACKGROUND Massive open online course (MOOC) research is an emerging field; to date, most research in this area has focused on participant engagement. OBJECTIVE Here, we evaluate both participant engagement and measures of satisfaction, appropriateness and burden for a MOOC entitled Understanding Multiple Sclerosis (MS) among a cohort of 3,518 international course participants. METHODS We assessed the association of key outcomes with participant education level, MS status, caregiver status, sex and age using summary statistics, t-tests and chi square tests. RESULTS Our key findings were: (1) the course was well received, with 97% of participants satisfied, with an appropriate pitch and low burden (a mean of 2.2 hours engagement per week); (2) people living with MS were less likely than those not living with MS to complete the course; (3) caregivers and participants without a university education were more likely to apply the material by course completion. CONCLUSIONS The Understanding MS MOOC is fit for purpose; it presents information in a way that is readily understood by course participants and is applicable in their lives.

scholarly journals Study protocol for a randomised controlled trial of a web-based behavioural lifestyle programme for emPOWERment in early Multiple Sclerosis (POWER@MS1)

BMJ Open ◽  
2021 ◽  
Vol 11 (2) ◽  
pp. e041720
Author(s):  
Nicole Krause ◽  
Karin Riemann-Lorenz ◽  
Tanja Steffen ◽  
Anne Christin Rahn ◽  
Jana Pöttgen ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Randomised Controlled Trial ◽  
Process Evaluation ◽  
Behaviour Change ◽  
Standard Care ◽  
Controlled Trial ◽  
Web Based ◽  
Complex Behaviour ◽  
Randomised Controlled ◽  
Lifestyle Programme

IntroductionMultiple sclerosis (MS) is an inflammatory and degenerative disease of the central nervous system that mainly affects young adults. Uncertainty is a major psychological burden of the disease from diagnosis to prognosis, enhanced by the pressure to make early decisions on a diverse set of immunotherapies. Watchful waiting for 1–2 years while adapting goals and lifestyle habits to life with a chronic disease represents another reasonable option for persons with MS (PwMS). A behaviour change programme based on evidence-based patient information (EBPI) is not available in standard care. This randomised controlled trial (RCT) with an embedded process evaluation investigates the efficacy and cost-effectiveness of a web-based behavioural lifestyle programme to change lifestyle behaviour and reduce inflammatory disease activity in PwMS.Methods and analysisA web-based behavioural intervention will be evaluated in an RCT aiming to recruit 328 persons with clinically isolated syndrome, suspected MS or confirmed MS for less than 1 year, who have not yet started immunotherapy. Moreover, a mixed-methods process evaluation and a health economic evaluation will be carried out. Participants will be recruited in at least 16 MS centres across Germany and randomised to an intervention group with 12 months of access to EBPI about lifestyle factors in MS, combined with a complex behaviour change programme or to a control group (optimised standard care). The combined primary endpoint is the incidence of new T2 lesions on MRI or confirmed relapses.Ethics and disseminationThe study has been approved by the Ethics Committee of the Hamburg Chamber of Physicians (PV6015). Trial results will be communicated at scientific conferences and meetings and presented on relevant patient websites and in patient education seminars.Trial registration numberClinicalTrials.gov Registry (NCT03968172); Pre-results.

scholarly journals Can Exposure to Online Conversations About Death and Dying Influence Death Competence? An Exploratory Study Within an Australian Massive Open Online Course

2018 ◽  
Vol 81 (2) ◽  
pp. 242-271 ◽  
Author(s):  
Lauren Miller-Lewis ◽  
Jennifer Tieman ◽  
Deb Rawlings ◽  
Deborah Parker ◽  
Christine Sanderson
Keyword(s):  
Exploratory Study ◽  
Positive Impact ◽  
Death And Dying ◽  
Online Course ◽  
Community Members ◽  
Massive Open Online ◽  
Large Effect Size ◽  
Massive Open Online Course ◽  
Learning Platform ◽  
Online Conversations

A Massive Open Online Course, Dying2Learn, was designed to foster community death conversations and strengthen community awareness of palliative care and death as a normal process. This exploratory study used a pre–post prospective design to determine if participation in Dying2Learn and exposure to online conversations about death and dying resulted in any significant influence on death competence in 134 participants who completed the Coping-with-Death-Scale both at the beginning and end of the course in 2016. Death competence refers to a range of attitudes and capabilities people have for dealing with death. Results at the end of the course indicated that engagement in Dying2Learn led to significant improvements in death competence scores over time (medium-to-large effect size). The positive impact was greater for those who completed more of the course, and effectiveness did not depend on sociodemographic characteristics. In conclusion, this study found that an online learning platform in the form of a Massive Open Online Course could engage community members in meaningful social discussion about death and dying, and that exposure to these conversations was beneficial for all participants regardless of previous exposure to death. Further exploration is required to determine whether this change in death competence will have an impact on participant’s behavior in the community regarding death conversations and preparedness.

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