A self-management programme to reduce falls and improve safe mobility in people with secondary progressive MS: the BRiMS feasibility RCT

This is the final version, also available from NIHR journals library via the DOI in this record.Abstract Background Balance, mobility impairments and falls are common problems for people with multiple sclerosis (MS). Our ongoing research has led to the development of Balance Right in MS (BRiMS), a 13-week home- and group-based exercise and education programme intended to improve balance and encourage safer mobility. Objective This feasibility trial aimed to obtain the necessary data and operational experience to finalise the planning of a future definitive multicentre randomised controlled trial. Design Randomised controlled feasibility trial. Participants were block randomised 1 : 1. Researcher-blinded assessments were scheduled at baseline and at 15 and 27 weeks post randomisation. As is appropriate in a feasibility trial, statistical analyses were descriptive rather than involving formal/inferential comparisons. The qualitative elements utilised template analysis as the chosen analytical framework. Setting Four sites across the UK. Participants Eligibility criteria included having a diagnosis of secondary progressive MS, an Expanded Disability Status Scale (EDSS) score of between ≥ 4.0 and ≤ 7.0 points and a self-report of two or more falls in the preceding 6 months. Interventions Intervention – manualised 13-week education and exercise programme (BRiMS) plus usual care. Comparator – usual care alone. Main outcome measures Trial feasibility, proposed outcomes for the definitive trial (including impact of MS, mobility, quality of life and falls), feasibility of the BRiMS programme (via process evaluation) and economic data. Results A total of 56 participants (mean age 59.7 years, standard deviation 9.7 years; 66% female; median EDSS score of 6.0 points, interquartile range 6.0–6.5 points) were recruited in 5 months; 30 were block randomised to the intervention group. The demographic and clinical data were broadly comparable at baseline; however, the intervention group scored worse on the majority of baseline outcome measures. Eleven participants (19.6%) withdrew or were lost to follow-up. Worsening of MS-related symptoms unrelated to the trial was the most common reason (n = 5) for withdrawal. Potential primary and secondary outcomes and economic data had completion rates of > 98% for all those assessed. However, the overall return rate for the patient-reported falls diary was 62%. After adjusting for baseline score, the differences between the groups (intervention compared with usual care) at week 27 for the potential primary outcomes were MS Walking Scale (12-item) version 2 –7.7 [95% confidence interval (CI) –17.2 to 1.8], MS Impact Scale (29-item) version 2 (MSIS-29vs2) physical 0.6 (95% CI –7.8 to 9) and MSIS-29vs2 psychological –0.4 (95% CI –9.9 to 9) (negative score indicates improvement). After the removal of one outlier, a total of 715 falls were self-reported over the 27-week trial period, with substantial variation between individuals (range 0–93 falls). Of these 715 falls, 101 (14%) were reported as injurious. Qualitative feedback indicated that trial processes and participant burden were acceptable, and participants highlighted physical and behavioural changes that they perceived to result from undertaking BRiMS. Engagement varied, influenced by a range of condition- and context-related factors. Suggestions to improve the utility and accessibility of BRiMS were highlighted. Conclusions The results suggest that the trial procedures are feasible and acceptable, and retention, programme engagement and outcome completion rates were sufficient to satisfy the a priori progression criteria. Challenges were experienced in some areas of data collection, such as completion of daily diaries.National Institute for Health Research (NIHR

A Photo-Essay

Dr. Dewey asked me to document our journey from Colorado to Lusk, Wyoming in photographs for this special issue I was extremely excited at the prospect. She gave me the freedom to take photographs of what I felt represented the journey for many women who have and will take to the prison, the Women’s Center in Lusk. The photos selected by Dr. Dewey are solely a handful of what was taken but are a full representation of the journey, and I wanted to introduce the photographs by highlighting my feelings and reflections on them. I do not feel that my words will entirely do them justice as each person who considers them will have their own feelings and find their own story within them, especially when putting themselves into the collective shoes of the women who were in mind when they were taken. These photographs are very much dedicated to those women and to the women I had the utmost privilege in working with during my time in the Women’s Center

Male Sex Work and Society by Victor Minichiello & John Scott, Harrington Press, 2014

Male Sex Work and Society by Victor Minichiello & John Scott, Harrington Press, 201

Look Who’s Talking:Using creative, playful arts-based methods in research with young children

Young children are often ignored or marginalised in the drive to address children’s participation and their wider set of rights. This is the case generally in social research, as well as within the field of Arts-Based Education Research. This article contributes to the growing literature on young children’s involvement in arts-based research, by providing a reflective account of our learning and playful engagement with children using creative methods. This small pilot project forms part of a larger international project titled Look Who’s Talking: Eliciting the Voices of Children from Birth to Seven, led by Professor Kate Wall at the University of Strathclyde. Visiting one nursery in Scotland, we worked with approximately 30 children from 3 to 5 years old. Seeking to connect with their play-based nursery experiences, we invited children to participate in a range of arts-based activities including drawing, craft-making, sculpting, a themed ‘play basket’ with various props, puppetry and videography. In this article, we develop reflective, analytical stories of our successes and dilemmas in the project. We were keen to establish ways of working with children that centred their own creativity and play, shaped by the materials we provided but not directed by us. However, we struggled to balance our own agenda with the more open-ended methods we had used. We argue that an intergenerational approach to eliciting voice with young children – in which adults are not afraid to shape the agenda, but do so in responsive, gradual and sensitive ways – creates the potential for a more inclusive experience for children that also meets researcher needs

Older adults’ experiences with using wearable devices:Qualitative systematic review and meta-synthesis

Background: Older adults may use wearable devices for various reasons, ranging from monitoring clinically relevant health metrics or detecting falls to monitoring physical activity. Little is known about how this population engages with wearable devices, and no qualitative synthesis exists to describe their shared experiences with long-term use. Objective: This study aims to synthesize qualitative studies of user experience after a multi-day trial with a wearable device to understand user experience and the factors that contribute to the acceptance and use of wearable devices. Methods: We conducted a systematic search in CINAHL, APA PsycINFO, PubMed, and Embase (2015-2020; English) with fixed search terms relating to older adults and wearable devices. A meta-synthesis methodology was used. We extracted themes from primary studies, identified key concepts, and applied reciprocal and refutational translation techniques; findings were synthesized into third-order interpretations, and finally, a “line-of-argument” was developed. Our overall goal was theory development, higher-level abstraction, and generalizability for making this group of qualitative findings more accessible. Results: In total, we reviewed 20 papers; 2 evaluated fall detection devices, 1 tested an ankle-worn step counter, and the remaining 17 tested activity trackers. The duration of wearing ranged from 3 days to 24 months. The views of 349 participants (age: range 51-94 years) were synthesized. Four key concepts were identified and outlined: motivation for device use, user characteristics (openness to engage and functional ability), integration into daily life, and device features. Motivation for device use is intrinsic and extrinsic, encompassing many aspects of the user experience, and appears to be as, if not more, important than the actual device features. To overcome usability barriers, an older adult must be motivated by the useful purpose of the device. A device that serves its intended purpose adds value to the user’s life. The user’s needs and the support structure around the device—aspects that are often overlooked—seem to play a crucial role in long-term adoption. Our “line-of-argument” model describes how motivation, ease of use, and device purpose determine whether a device is perceived to add value to the user’s life, which subsequently predicts whether the device will be integrated into the user’s life. Conclusions: The added value of a wearable device is the resulting balance of motivators (or lack thereof), device features (and their accuracy), ease of use, device purpose, and user experience. The added value contributes to the successful integration of the device into the daily life of the user. Useful device features alone do not lead to continued use. A support structure should be placed around the user to foster motivation, encourage peer engagement, and adapt to the user’s preferences

The Views and Needs of People With Parkinson Disease Regarding Wearable Devices for Disease Monitoring: Mixed Methods Exploration

Background: Wearable devices can diagnose, monitor, and manage neurological disorders such as Parkinson disease. With a growing number of wearable devices, it is no longer a case of whether a wearable device can measure Parkinson disease motor symptoms, but rather which features suit the user. Concurrent with continued device development, it is important to generate insights on the nuanced needs of the user in the modern era of wearable device capabilities. Objective: This study aims to understand the views and needs of people with Parkinson disease regarding wearable devices for disease monitoring and management. Methods: This study used a mixed method parallel design, wherein survey and focus groups were concurrently conducted with people living with Parkinson disease in Munster, Ireland. Surveys and focus group schedules were developed with input from people with Parkinson disease. The survey included questions about technology use, wearable device knowledge, and Likert items about potential device features and capabilities. The focus group participants were purposively sampled for variation in age (all were aged >50 years) and sex. The discussions concerned user priorities, perceived benefits of wearable devices, and preferred features. Simple descriptive statistics represented the survey data. The focus groups analyzed common themes using a qualitative thematic approach. The survey and focus group analyses occurred separately, and results were evaluated using a narrative approach. Results: Overall, 32 surveys were completed by individuals with Parkinson disease. Four semistructured focus groups were held with 24 people with Parkinson disease. Overall, the participants were positive about wearable devices and their perceived benefits in the management of symptoms, especially those of motor dexterity. Wearable devices should demonstrate clinical usefulness and be user-friendly and comfortable. Participants tended to see wearable devices mainly in providing data for health care professionals rather than providing feedback for themselves, although this was also important. Barriers to use included poor hand function, average technology confidence, and potential costs. It was felt that wearable device design that considered the user would ensure better compliance and adoption. Conclusions: Wearable devices that allow remote monitoring and assessment could improve health care access for patients living remotely or are unable to travel. COVID-19 has increased the use of remotely delivered health care; therefore, future integration of technology with health care will be crucial. Wearable device designers should be aware of the variability in Parkinson disease symptoms and the unique needs of users. Special consideration should be given to Parkinson disease-related health barriers and the users' confidence with technology. In this context, a user-centered design approach that includes people with Parkinson disease in the design of technology will likely be rewarded with improved user engagement and the adoption of and compliance with wearable devices, potentially leading to more accurate disease management, including self-management

User preferences for the design of wearable technology systems - a scoping review: 194

Background: Wearable technology is a fast developing area. Often, the focus of research is on accuracy, while the practicalities of using the device may be overlooked, despite the fact that this greatly influences utility. This scoping review therefore explored the design and usability preferences of people for wearable technology for health monitoring. Methods: A scoping review was conducted of literature evaluating user preferences for the design of wearable technology systems, for people aged >50 years, with good health, or chronic diseases. Results: A search of relevant databases yielded 628 potential studies (after duplicates removed). Following title/abstract and then full text screening, 17 papers were included. The most commonly reported theme related to design and user interface (13 studies). Users wanted a small, unobtrusive and light device which doesn’t snag on clothing or affect activities of daily living, but yet has a readable and easy-to-use interface, which may prove challenging for designers! Users were most happy to wear a device on the wrist and/or hip region, being considered the least obtrusive / most discrete. Users were open to the technology aspects of the device, but wanted specific training, or clear and readable instructions. Less commonly reported parameters included issues with privacy and ownership of data (two studies); cost (two studies); reliability and accuracy (three studies), including being accurate overnight and in the shower, etc.; and clinical usefulness, i.e. the data being effectively linked with other healthcare data. Where considered, participants didn’t want to wear a device by night (two studies). Safety of wearable devices was not a theme in any study. Conclusion: Overall, user needs seem to be rarely considered in the design of wearable technology for health monitoring. However, the limited studies do highlight important user concerns, which should be considered by the technology designers and prescribers

Re-storying autism: a body becoming disability studies in education approach

This paper presents and analyzes six short first-person films produced through a collaborative multimedia storytelling workshop series focused on experiences of autism, education and inclusion. The aim of the project is to co-create new understandings of autism beyond functionalist and biomedical ones that reify autism as a problem of disordered brains and underpin special education. We fashion a body becoming disability studies in education approach to proliferate stories of autism outside received cultural scripts – autism as biomedical disorder, brain-based difference, otherworldliness, lost or stolen child and more. Our approach keeps the meaning of autism moving, always emerging, resisting, fading away and becoming again in relation to context, time, space, material oppressions, cultural scripts, intersecting differences, surprising bodies and interpretative engagement. We argue that the films we present and analyse not only significantly change and critique traditional special education approaches based on assumptions of the normative human as non-autistic, they also enact ‘autism’ as a becoming process and relation with implications for inclusive educators. By this we mean that the stories shift what autism might be and become, and open space for a proliferation of representations and practices of difference in and beyond educational contexts that support flourishing for all

Continuous home monitoring of Parkinson's disease using inertial sensors: A systematic review.

Parkinson's disease (PD) is a progressive neurological disorder of the central nervous system that deteriorates motor functions, while it is also accompanied by a large diversity of non-motor symptoms such as cognitive impairment and mood changes, hallucinations, and sleep disturbance. Parkinsonism is evaluated during clinical examinations and appropriate medical treatments are directed towards alleviating symptoms. Tri-axial accelerometers, gyroscopes, and magnetometers could be adopted to support clinicians in the decision-making process by objectively quantifying the patient's condition. In this context, at-home data collections aim to capture motor function during daily living and unobstructedly assess the patients' status and the disease's symptoms for prolonged time periods. This review aims to collate existing literature on PD monitoring using inertial sensors while it focuses on papers with at least one free-living data capture unsupervised either directly or via videotapes. Twenty-four papers were selected at the end of the process: fourteen investigated gait impairments, eight of which focused on walking, three on turning, two on falls, and one on physical activity; ten articles on the other hand examined symptoms, including bradykinesia, tremor, dyskinesia, and motor state fluctuations in the on/off phenomenon. In summary, inertial sensors are capable of gathering data over a long period of time and have the potential to facilitate the monitoring of people with Parkinson's, providing relevant information about their motor status. Concerning gait impairments, kinematic parameters (such as duration of gait cycle, step length, and velocity) were typically used to discern PD from healthy subjects, whereas for symptoms' assessment, researchers were capable of achieving accuracies of over 90% in a free-living environment. Further investigations should be focused on the development of ad-hoc hardware and software capable of providing real-time feedback to clinicians and patients. In addition, features such as the wearability of the system and user comfort, set-up process, and instructions for use, need to be strongly considered in the development of wearable sensors for PD monitoring