Design considerations for a multiple sclerosis fatigue mobile app MS Energize: A pragmatic iterative approach using usability testing and resonance checks.

Multiple sclerosis (MS) is a chronic neurological condition affecting around 2.2 million people worldwide. The illness includes a range of symptoms, with fatigue considered to be one of the most disabling. This paper describes how a pragmatic and iterative approach, supported by usability and resonance testing, was used to build a minimum viable product of MS Energize-or MS Energise in UK English regions. MS Energise is a mobile application focused on self-management of fatigue for people with MS. The iterative approach included various stages of testing, during which user feedback including comments about interface, navigation and content, was sought to inform incremental app development and continual improvement. Usability testing was conducted with 11 people with longstanding multiple sclerosis in New Zealand and the United Kingdom, and focused on particular sections of the app as well as the accessibility of the app to users with MS. Two participants contributed to further resonance testing post-release to ensure the app was perceived as relevant and useful to the user. The usability testing and resonance testing phases suggested that user experience of MS Energise was mostly positive. Participants provided a number of suggestions for improvements to aspects of content and design; some of which we implemented during our app development process. Findings will also contribute to future planning and design iteration to enhance the user experience. The next step is further improvement of MS Energise prior to a trial of its clinical and cost effectiveness.

Pilot trial of The Living Well Toolkit: qualitative analysis and implications for refinement and future implementation.

BACKGROUND: Following a neurological event, people's long-term health and well-being is hampered by a system that struggles to deliver person-centred communication and coordinated care and fails to harness individual and family capability to live well with the condition. We aimed to implement and evaluate a toolkit package to support these processes for people with long-term neurological conditions. METHODS: This is a multi-phased study drawing on the principles of participatory research. In this pilot phase, the toolkit package was introduced to clinicians, who introduced it to clients in four neurorehabilitation settings (inpatient and community-based). Individual and focus group interviews were carried out with clients (n = 10) and clinicians (n = 9). Data were categorised by the four components of Normalisation Process Theory (NPT), and data within each component was then coded inductively. This analysis was used to inform revisions to the toolkit package and wider implementation processes. RESULTS: There was widespread support for the principles underpinning the toolkit package from clients and clinicians. However, it was less clear how the client toolkit could support these principles in clinical practice which impacted buy-in. The flexibility of use of the client toolkit, which we encouraged, made it difficult for clinicians and clients to be clear about its purpose and for clinicians to operationalise in practice. Clinicians and clients identified a number of barriers that limited the time, energy and work users were able or prepared to invest, to the extent that uptake of the toolkit package was modest. Use of the toolkit package appeared more likely when clinicians perceived it to augment existing processes (e.g. goal setting) rather than detract from 'doing' therapy. This analysis was used to inform revisions to the toolkit package, including simplification of the client toolkit, development of videos with examples of use and a modular and reflective training package for clinical services. The refinements were intended to improve sense-making and minimise the cognitive barriers associated with implementation of a new intervention. CONCLUSION: Understanding how supporting the client toolkit could add value to the therapeutic encounter was necessary for clinicians to invest time and perceive the worth of the toolkit package. TRIAL REGISTRATION: ANZCTR: ACTRN12614000537651. Registered 21 May, 2014.

Constructing Normalcy in Dementia Care: Carers' Perceptions of Their Roles and the Supports They Need.

BACKGROUND AND OBJECTIVES: People with dementia are critically dependent on their carers when accessing and utilizing health care. To inform health care development and delivery, we aimed to explore carers' perceptions of their role in caring for a family member with dementia and to identify carers' skills and attributes and factors impacting on care. RESEARCH DESIGN AND METHODS: We used semistructured interviews to collect data from 25 carers supporting older adults with dementia. Data were thematically analyzed and the paradigm model was used to guide theory development. RESULTS: "Constructing normalcy" was central to all carers did, impacted by stage of life and relationship status and driven by a holistic focus on their care-recipient's quality of life. Goals guiding care were: keeping the peace; facilitating participation, happiness and independence; and ensuring safety. Enablers included: social contact; knowledge; and quality social services. Barriers included health and legal issues; symptoms of dementia; and reduced knowledge. These goals kept the peace and reduced stress for the cared-for person, but often at the cost of unrelenting responsibility and loss of carers' original roles. Discussion and Implications: As carers are so critical to the access and uptake of health care of those with dementia, health professionals and services need to support carers in their quest to construct normalcy. Our findings provide guidance to assist in ensuring appropriate support and understanding of carers work in order to optimize dementia health care delivery.

Working-age adults' perspectives on living with persistent postural-perceptual dizziness: a qualitative exploratory study.

OBJECTIVES: To (a) explore the experiences of persistent postural-perceptual dizziness (PPPD), formerly chronic subjective dizziness on the personal, work and social lives of working-age adults; (b) enhance current understandings of the condition and its impact on the lives of working-age adults and (c) highlight points for consideration and importance to clinical practice. METHODS: This qualitative exploratory study drew on interpretive descriptive methodology. Working-age adults (n=8) diagnosed with PPPD were recruited from a single New Zealand community-based specialist clinic. Data from interviews (n=8) and postinterview reflections (n=2) were analysed using thematic analysis. RESULTS: Three themes were constructed: (1) It sounds like I'm crazy-referring to the lack of medical, social and self-validation associated with PPPD; (2) I'm a shadow of my former self-representing the impact of the condition on sense of self and life trajectory and (3) How will I survive?- highlighting individual coping processes. CONCLUSION: This study contributed to the existing body of knowledge by highlighting the complexity and fluidity of experiencing PPPD. It also drew attention to the tension between the acute illness framework that forms the basis of many therapeutic interactions and the enduring psychosocial support needs of the person experiencing PPPD. The findings highlighted that contextual factors need to be taken into account and that a person-centred and biopsychosocial approach, rather than a condition-specific biomedical approach, is needed for care to be perceived as meaningful and satisfactory.

MS Energize: Field trial of an app for self-management of fatigue for people with multiple sclerosis.

Multiple sclerosis (MS) is a lifelong neurological condition affecting around 2.2 million people worldwide. There are a wide range of symptoms, with fatigue reported as one of the most troublesome. MS Energize-or MS Energise in UK English regions-is an iPhone app focused on self-management of fatigue for people with MS. Based on cognitive-behavioral therapy principles, the app covers MS fatigue, how to use energy effectively, how behavior, thoughts and emotions interact and impact on MS fatigue, as well as the potential effects of bodily and environmental factors. MS Energize provides education, interactive tasks, and supports application of the principles into a user's day-to-day life. We field tested the usability and perceived usefulness of MS Energize with 11 people with longstanding multiple sclerosis in New Zealand and the United Kingdom. Participants used the app over a period of five to six weeks after which they rated the usability of the app and participated in an in-depth qualitative interview. We developed four main themes through our thematic analysis. 1. Validation of participants' own experiences of living with MS fatigue. 2. The personal cost in engaging with such an intervention. 3. Reframing experiences and adding to knowledge. 4. That the app was generally a good idea. Field testers' feedback also identified usability issues that could be addressed. In particular, the amount of text-based content in the app contributed to the app itself being fatiguing. This field-testing process has highlighted the value of the app while also guiding our roadmap for further developments to enhance usability and usefulness. The next step is further refinement of components of MS Energize in preparation for a trial of its clinical and cost effectiveness.

Development of a toolkit to enhance care processes for people with a long-term neurological condition: a qualitative descriptive study.

OBJECTIVE: To (A) explore perspectives of people with a long-term neurological condition, and of their family, clinicians and other stakeholders on three key processes: two-way communication, self-management and coordination of long-term care; and (B) use these data to develop a 'Living Well Toolkit', a structural support aiming to enhance the quality of these care processes. DESIGN: This qualitative descriptive study drew on the principles of participatory research. Data from interviews and focus groups with participants (n=25) recruited from five hospital, rehabilitation and community settings in New Zealand were analysed using conventional content analysis. Consultation with a knowledge-user group (n=4) and an implementation champion group (n=4) provided additional operational knowledge important to toolkit development and its integration into clinical practice. RESULTS: Four main, and one overarching, themes were constructed: (1) tailoring care:referring to getting to know the person and their individual circumstances; (2) involving others: representing the importance of negotiating the involvement of others in the person's long-term management process; (3) exchanging knowledge: referring to acknowledging patient expertise; and (4) enabling: highlighting the importance of empowering relationships and processes. The overarching theme was: assume nothing. These themes informed the development of a toolkit comprising of two parts: one to support the person with the long-term neurological condition, and one targeted at clinicians to guide interaction and support their engagement with patients. CONCLUSION: Perspectives of healthcare users, clinicians and other stakeholders were fundamental to the development of the Living Well Toolkit. The findings were used to frame toolkit specifications and highlighted potential operational issues that could prove key to its success. Further research to evaluate its use is now underway.