scholarly journals Adaptation of a live video mind-body program to a web-based platform for english-speaking adults with neurofibromatosis (NF): Protocol for the NF-Web study (Preprint)

10.2196/27526 ◽  
2021 ◽  
Author(s):  
Ethan G Lester ◽  
Sarah W Hopkins ◽  
Paula J Popok ◽  
Ana-Maria Vranceanu
2021 ◽  
Author(s):  
Ethan G Lester ◽  
Sarah W Hopkins ◽  
Paula J Popok ◽  
Ana-Maria Vranceanu

BACKGROUND The neurofibromatoses (NF) are rare genetic conditions associated with lower, but modifiable quality of life (QoL). Despite having a virtual live video program (Relaxation Response Resiliency Program for NF [3RP-NF]; randomized controlled efficacy trial [RCT] underway), ongoing barriers impede some patients from engaging in this intervention. Therefore, a necessary next step is to develop a stand-alone web-based intervention that reduces barriers to accessing NF-specific psychosocial care. OBJECTIVE First, we aim to develop a web-based platform (NF-Web) of our mind-body resiliency program (3RP-NF) through qualitative interviews with participants from the adult efficacy RCT. Second, we aim to iteratively optimize the the feasibility, acceptability, credibility and satisfaction of the NF-Web platform through open pilot trials with participant exit interviews, and explore quantitative outcomes within this sample. Here, we describe the protocol/study design, intervention, and analysis plan. METHODS For Aim 1, we will invite completers from our efficacy trial to participate in qualitative interviews (N = 20). We will use data from these interviews to adapt the content of the live video program for asynchronous delivery and understand best format for the development of an engaging web platform. For Aim 2, we will enroll eligible participants recruited for the efficacy trial who could not enroll due to treatment barriers. Eligibile participants will complete QoL, depression, anxiety, pain, treatment satisfaction and program credibility measures at baseline and/or posttest. Inclusion criteria are identical to the efficacy trial, including stress and coping difficulties (self-report), no change in antidepressant medication in the past 3 months, no psychotherapy in the past 3 months, no major upcoming surgeries in the next 12 months, English speaking, able to complete questionnaires online and participate in live video interventions, and consented prior to participation. Primary outcomes are feasibility, treatment satisfaction, and credibility. Secondary outcomes include physical, psychological, social and environmental QoL, depression, anxiety, pain intensity and pain interference. We will enroll at least 2 group cohorts and iteratively refine the program based on participants feedback after each cohort. RESULTS The trial is currently ongoing. We are completing interviews (N = 23) and plan to analyze data to construct the website. Afterwards, we will recruit our cohorts of participants for the trial (N = ~15/cohort; T = 30). Recruitment will end May 2021 with plans to analyze data by October 2021. CONCLUSIONS We will develop the first web platform for people with NF with difficulties managing stress and NF symptoms and report on feasibility and preliminary effect in improving QoL and psychosocial functioning. NF-web has the potential to dramatically extend the reach of our 3RP-NF intervention by removing important barriers to care including lack of trained providers, scheduling difficulties, and appearance concerns.


2017 ◽  
Vol 81 (2) ◽  
Author(s):  
Liana Markelova

The present study aims to trace the evolution of public attitude towards the mentally challenged by means of the corpus-based analysis. The raw data comes from the two of the BYU corpora: Global Web-Based English (GloWbE) and Corpus of Historical American English (COHA). The former is comprised of 1.8 million web pages from 20 English-speaking countries (Davies/Fuchs 2015: 1) and provides an opportunity to research at a cross-cultural level, whereas the latter, containing 400 million words from more than 100,000 texts ranging from the 1810s to the 2000s (Davies 2012: 121), allows to carry on a diachronic research on the issue. To identify the difference in attitudes the collocational profiles of the terms denoting the mentally challenged were created. Having analysed them in terms of their semantic prosody one might conclude that there are certain semantic shifts that occurred due to the modern usage preferences and gradual change in public perception of everything strange, unusual and unique.


Author(s):  
Dries Pauwels ◽  
Jeroen van der Hooft ◽  
Stefano Petrangeli ◽  
Tim Wauters ◽  
Danny De Vleeschauwer ◽  
...  
Keyword(s):  

2017 ◽  
Vol 35 (31_suppl) ◽  
pp. 134-134
Author(s):  
Elizabeth Trice Loggers ◽  
Stephen Duane Watkins King ◽  
Jesse R Fann ◽  
Kerry K McMillin ◽  
Jodie HN David ◽  
...  

134 Background: Addressing distress in cancer patients is now broadly recognized as critical to well-being and associated with increased survival. Cancer centers are developing innovative distress screening methods; we describe our novel process and results. Methods: New patients from 9/2015 to 3/2017 received an email requesting completion of a 44-item web-based survey assessing depression (2-item Patient Health Questionnaire), anxiety (2-item Generalized Anxiety Disorder), quality of life (QOL, 28-item Functional Assessment of Cancer Treatment-General), malnutrition (3-item Malnutrition Screening Tool), and 9 items addressing existential crisis, physical function, symptoms, tangible needs and concerns for dependent children. Results were computer scored, with positive screens resulting in direct, automated referrals to supportive care services (SCR). Analysis includes descriptive statistics and logistic regression using SAS 9.4. Results: 71% (n = 2629 of 3724) of those approached provided an email and completed the survey; 73% reporting no survey burden. Non-responders were more likely to be minority, non-English speaking, with non-commercial insurance (all p < 0.001). 59% (n = 1543) of responders screened positive for one or more SCR, including 6% to palliative care for poor QOL or symptoms. Receipt of SCR was more likely with Medicaid insurance (1.36 odds ratio [OR], 95% confidence interval [CI] 1.06-1.76, p = .0061); plan to receive care (1.27 OR, CI 1.07-1.50, p = .0061); and any report of survey burden (2.26 OR, CI 1.83-2.80, p < .0001). Conclusions: Web-based distress screening is feasible, efficient and not burdensome for the majority of cancer patients. Those who find this screening burdensome are two-fold more likely to have distress. Future efforts should address screening of vulnerable populations.


2021 ◽  
pp. 026988112110135
Author(s):  
Malin Vedøy Uthaug ◽  
Alan K Davis ◽  
Trevor Forrest Haas ◽  
Dawn Davis ◽  
Sean B Dolan ◽  
...  

Background: Mescaline is a naturally occurring psychoactive phenethylamine found in several cacti and historically used ceremonially by Indigenous and Latin American populations. Broader recognition of its possible therapeutic value in Western science began in the 1950s; however, knowledge of the safety profile of mescaline and the extent of its use remains limited. The primary aim of this study is to examine the epidemiology of mescaline use among English-speaking adults. Methods: About 452 respondents completed a web-based survey designed to assess their previous experience with mescaline (subjective effects, outcome measures, and mescaline type used). Results: Most respondents reported that they had consumed mescaline infrequently (⩽once/year), for spiritual exploration or to connect with nature (74%). A small number of respondents reported drug craving/desire (9%), whereas very few reported legal (1%), or psychological problems (1%) related to its use, and none reported seeking any medical attention. Overall, respondents rated the acute mystical-type effects as “ moderate,” ego-dissolution and psychological insight effects as “ slight,” and challenging effects as “ very slight.” Most respondents reported that they used Peyote and San Pedro in their most memorable mescaline experience. Overall, the intensity of acute mescaline effects did not differ between mescaline types. About 50% of the sample reported having a psychiatric condition (i.e. depression, anxiety, etc.), and most (>67%) reported improvements in these conditions following their most memorable experience with mescaline. Conclusion: Findings indicate that the mescaline in any form may produce a psychedelic experience that is associated with the spiritual significance and improvements in the mental health with low potential for abuse.


2019 ◽  
Vol 2 (1) ◽  
pp. 74-85
Author(s):  
Upeka Mendis ◽  
Yanuarius Yanu Dharmawan

Understanding learner interaction in web based learning to improve English speaking skills in second grade classroom of SMAN 4 senior high school Bandar Lampung: using canvas learning management system, English Study Program, Teacher Training Faculty of Bandar Lampung University.The objective of conducting this research is to find out the interaction in Canvas Learning management system (LMS) in the speaking classroom and effects of using Canvas LMS to improve speaking skills. After it is confirmed that there is indeed necessity behind the action, I will explain concepts of interaction, Canvas LMS and speaking skills.   The participants of this research are students in second grade of SMAN 4 senior high school. They are selected as data resource to know about interaction and effects of using Canvas LMS. From them, I retrieve data to be analyzed. By giving questionnaire, observing and conducting independent sample t-test method gives me some findings to discuss. The results show that there is indeed necessity in doing English speaking lessons in Canvas LMS. Moreover it is about students’ interaction and effects to improve English speaking skills. First is about interaction, it is the main ingredient in any kinds of learning methods. There are three main types introduced my Moore (1989), there are learner-instructor, learner- learner and learner-content. Those types necessary appear in web based learning. These interactions lead to improve students’ speaking skills too.


2021 ◽  
Author(s):  
Rebeccah Bartlett ◽  
Jacqueline Boyle ◽  
Jessica Simons Smith ◽  
Nadia Khan ◽  
Tracy Robinson ◽  
...  

Abstract Background: Australian women from migrant and refugee communities experience reduced access to sexual and reproductive healthcare. Human-centred design is an ethical and effective approach to developing health solutions with underserved populations that are more likely to experience significant disadvantage or social marginalisation. This study aimed to evaluate how well Shifra, a small Australian-based not-for-profit, applied human-centred design when developing a web-based application that delivers local, evidence-based and culturally relevant health information to its non-English speaking users. Methods: This study undertook a document review, survey and semi-structured interviews to evaluate how well Shifra was able to achieve its objectives using a human-centred design approach. Results: A co-design process successfully led to the development of a web-based health app for refugee and migrant women. This evaluation also yielded several important recommendations for improving Shifra’s human-centred design approach moving forward. Conclusions: Improving refugees’ access to sexual and reproductive health is complex and requires innovative and thoughtful problem solving. This evaluation of Shifra’s human-centred design approach provides a helpful and rigorous guide in reporting that may encourage other organisations undertaking human-centred design work to evaluate their own implementation. Keywords: human-centred design; design thinking; refugee health; evaluation Plain language summary: Australian women from non-English speaking migrant and refugee communities face reduced access to sexual and reproductive healthcare and many then go on to experience poor health outcomes as a result. There is an urgent need for new approach to improve access to healthcare for underserved communities, one that centres these women in the process of finding, developing and disseminating the solutions themselves. Human-centred design is an ethical and effective methodology to working with communities to develop these health solutions. This study aimed to evaluate how well Shifra, a small Australian-based not-for-profit focused on improving access to healthcare for refugees and new migrants, undertook human-centred design approach when developing a Smartphone app that deliver local, safe and culturally relevant health information to non-English speaking Australians. The authors interviewed refugees, health and social sector experts and computer programmers involved in creating Shifra to evaluate how well they used human-centred design to achieve its goals. This evaluation found that Shifra’s approach was successful whilst also highlighting several important recommendations for improving collaborative efforts with refugee communities. These findings could help other projects also seeking to undertake an authentic community co-design process.


2020 ◽  
Vol 3 (2) ◽  
pp. 90-104
Author(s):  
Irfan Suryana ◽  
Vicky Hidantikarnillah ◽  
Ikmi Nur Oktavianti

Teachers play a very important role in the teaching and learning process. They should utilize effective strategies that are included in classroom management. In this digital era, the teachers should adjust their methods in delivering or explaining the materials for the students. One of the technology is the web. The aim of this study is to investigate the teacher’s perceptions of using the web to enhance students’ English speaking skills. This study was under phenomenological qualitative research and characterized by an interdisciplinary approach, especially education and technology.  The direct personal interview was utilized to obtain the information from the teacher. The survey encompasses twelve questions that become different categories and was done in eight grades of class B in SMP Negeri 3 Pleret. The results showed that teaching speaking using the web can effectively enhance the students’ English speaking skills and the students give positive reactions regarding this method.


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