A study protocol: co-designing a mobile application to enhance communication, safety and wellbeing for people living at home with early stage dementia (Preprint)

2020 ◽  
Author(s):  
Karen Davies ◽  
Bie Nio Ong ◽  
Sudeh Cheraghi-Sohi ◽  
Katherine Perryman ◽  
Caroline Sanders
Keyword(s):  
Mobile Application ◽  
Design Research ◽  
Early Stage ◽  
Design Method ◽  
Mobile Apps ◽  
Care Service ◽  
Normalisation Process Theory ◽  
Policy And Practice ◽  
People With Dementia ◽  
At Home

BACKGROUND Background: There is a growing interest in using mobile applications in supporting health and wellbeing. Evidence directly from people with dementia regarding the acceptability, usability and usefulness of mobile apps is limited. It builds on ‘My Health Guide’ which was co-designed with people with cognitive disabilities. . OBJECTIVE Objective This paper describes the protocol of a study evaluating an app designed for supporting wellbeing with people living with dementia, specifically focusing on enhanced safety through improved communication METHODS Method: The study will employ design research, using participatory qualitative research methods over three cycles of evaluation with service users, their families and practitioners. The study will be developed in partnership with a specialist home care service in England. A purposive case selection will be used to ensure that the cases exemplify differences in experiences. The app will be evaluated in a ‘walkthrough’ workshop by people living with early stage dementia and then trialled at home by up to 12 families in a ‘try-out’ cycle. An amended version will be evaluated in a final ‘walkthrough’ workshop in cycle 3. Data will be collected from at least four data sources during the try-out phase and analysed thematically (people with dementia, carers, practitioners and app usage). An explanatory, multiple-case study design will be used to synthesise and present the evidence from the three cycles drawing on Normalisation Process Theory to support interpretation of the findings. RESULTS Results: The study is ready to be implemented but has been paused to protect vulnerable individuals during the Coronavirus in 2020. The findings will be particularly relevant for understanding how to support vulnerable people living in the community during social distancing and the period following the pandemic, as well as providing insight into the challenges of social isolation arising from living with dementia CONCLUSIONS Discussion: Evaluating a mobile application for enhancing communication, safety and wellbeing for people living with dementia contributes to key ambitions enshrined in policy and practice, championing the use of digital technology and supporting people with dementia to live safely in their own homes. The study uses a co-design method to enable the voice of users with dementia to highlight the benefits and challenges of technology and shape future development of apps that potentially enhances safety through improved communication.

Preferred place of death in paediatric, teenage and young adult haemato-oncology patients: a retrospective review

2020 ◽  
pp. bmjspcare-2019-002005
Author(s):  
Philippa Stilwell ◽  
Ankit Bhatt ◽  
Keval Mehta ◽  
Ben Carter ◽  
Maggie Bisset ◽  
...  
Keyword(s):  
Young People ◽  
End Of Life ◽  
Service Provision ◽  
Early Stage ◽  
Care Service ◽  
Case Series ◽  
Palliative Care Service ◽  
Place Of Death ◽  
P Value ◽  
At Home

ObjectivesIdentifying the preferred place of death for children/young people with cancer and determining whether this is achieved is pertinent to inform palliative care service provision. The aims of this retrospective case series review were to determine where children/young people with cancer want to die and whether their preferred place of death was achieved.MethodsClinical/demographic details, including preferred and actual places of death, were recorded for 121 patients who died between 2012 and 2016 at a tertiary haematology–oncology centre. A logistic regression model was used to determine the odds of achieving the preferred place of death in patient subgroups.Results74 (61%) patients had a documented discussion regarding place of death preference. Where a preferred location was identified, 72% achieved it. All patients who wanted to die in the hospital (n=17) or a hospice (n=9) did, but only 58% of patients who wanted to die at home (n=40) achieved this. Of the 42% (n=17) who wanted to die at home but did not, 59% of these were due to rapid deterioration in clinical status shortly after the discussion. Having supportive treatment in the last month of life was associated with increased odds of achieving the preferred place of death versus those who were undergoing chemotherapy/radiotherapy (OR 3.19, 95% CI 1.04 to 9.80, p value=0.04).ConclusionWhere hospice/hospital was chosen as the preferred place of death, this was always achieved. Achieving home as the preferred place of death was more challenging and frequently prevented by rapid clinical deterioration. Clinicians should be encouraged to address end-of-life preferences at an early stage, with information provided adequately. Further research should explore implications of these findings on both end-of-life experience and overall service provision.

scholarly journals The Value of Including People with Dementia in the Co-Design of Personalized eHealth Technologies

2019 ◽  
Vol 47 (3) ◽  
pp. 164-175 ◽  
Author(s):  
Cristian Leorin ◽  
Eloisa Stella ◽  
Christopher Nugent ◽  
Ian Cleland ◽  
Cristiano Paggetti
Keyword(s):  
Lived Experience ◽  
Participatory Design ◽  
Summer School ◽  
Design Research ◽  
Early Stage ◽  
Real Life ◽  
Connected Health ◽  
People With Dementia ◽  
Eu Project ◽  
User Centered

Background: In this article, we discuss the benefits and implications of the shift from a user-centered to a co-creation approach in the processes of designing and developing eHealth and mHealth solutions for people with dementia. To this end, we illustrate the case study of a participatory design experience, implemented at the REMIND EU Project, Connected Health Summer School, which took place in June 2018 at Artimino (Italy). Objectives: The initiative was intended to reach two objectives: (1) help researchers specializing in a variety of fields (engineering, computing, psychology, nursing, and dementia care) develop a deeper understanding of how individuals living with dementia expect to be supported and/or enabled by eHealth and mHealth technologies and (2) prevent the tendency to focus on the impairments that characterize dementia at the expense of seeing the individual living with this condition as a whole person, striving to maintain a life that is as fulfilling as possible. Method: The Connected Health Summer School is an annual multidisciplinary training program, organized in collaboration with the REMIND EU Project, designed for early-stage researchers interested in the development of new eHealth and mHealth services and apps. For the 2018 program edition, REMIND end user partner Novilunio invited two members of the Irish Dementia Working Group to deliver keynote lectures, and engage in participatory workshops to facilitate the creation of digital technology applications based on their specific real-life needs, values, and expectations. Their involvement as participants and experts was aimed to give a clear message to early-stage researchers: a true personalized approach to eHealth and mHealth solutions can only emerge from a highly reflective and immersive appreciation of people’s subjective accounts of their lived experience. Results/Conclusions: The Connected Health Summer School early-stage researchers developed 6 app mock-ups based on their discussions and co-creation activities with the two experts with dementia. The reflections on this experience highlight a number of important issues that demand consideration when undertaking eHealth and mHealth research, co-design, and development with and for people with dementia. The evolution in design research from a user-centered approach to co-designing should pave the way to the development of technologies that neither disempower nor reinforce stigma, but instead provide a reliable support to living a life as active and meaningful as possible after a diagnosis of dementia. To this end, the motto of the peak global organization of people with dementia, Dementia Alliance International, says it all: “See the person and not the dementia.”

scholarly journals Remote monitoring of progression in early Parkinson's disease: reliability and validity of the Roche PD Mobile Application v2

2021 ◽  
Author(s):  
Florian Lipsmeier ◽  
Kirsten I Taylor ◽  
Ronald B Postuma ◽  
Ekaterina Volkova-Volkmar ◽  
Timothy Kilchenmann ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Mobile Application ◽  
Rating Scale ◽  
Early Stage ◽  
Digital Health ◽  
Intraclass Correlation ◽  
Reliability And Validity ◽  
Health Technologies ◽  
At Home

Digital health technologies (DHTs) enable remote and therefore frequent measurement of motor signs, potentially providing reliable and valid estimates of motor sign severity and progression in Parkinson's disease (PD). The Roche PD Mobile Application v1 was revised to v2 to include more measures of bradykinesia, and bradyphrenia and speech tests, to optimize suitability for early-stage PD. It was studied in 316 early-stage PD participants who performed daily active tests at home then carried a smartphone and wore a smartwatch throughout the day for passive monitoring (study NCT03100149). Adherence was excellent (96.29%). All pre-specified sensor features exhibited good-to-excellent test-retest reliability (median intraclass correlation coefficient = 0.9), and correlated with corresponding Movement Disorder Society - Unified Parkinson's Disease Rating Scale items (rho: 0.12-0.71). These findings demonstrate the preliminary reliability and validity of remote at-home quantification of motor sign severity with the Roche PD Mobile Application v2 in individuals with early PD.

A design contribution to the entrepreneurial experience

2019 ◽  
Vol 2 (1) ◽  
Author(s):  
Juan David ROLDAN ACEVEDO ◽  
Ida TELALBASIC
Keyword(s):  
Product Development ◽  
Qualitative Analysis ◽  
Design Research ◽  
Recent Literature ◽  
Early Stage ◽  
Entrepreneurial Activity ◽  
Value Proposition ◽  
Structured Interviews ◽  
User Centric ◽  
Constant Growth

In recent history, different design approaches have been entering fields like management and strategy to improve product development and service delivery. Specifically, entrepreneurship has adopted a user-centric mindset in methodologies like the business canvas model and the value proposition canvas which increases the awareness of the users’ needs when developing solutions. What happens when a service design approach is used to understand the entrepreneurs’ experience through the creation of their startups? Recent literature suggests that entrepreneurial activity and success is conditioned by their local entrepreneurship ecosystem. This study investigates the Entrepreneurship Ecosystem of Medellín, Colombia - an ecosystem in constant growth but that lacks qualitative analysis. The sample consists of 12 entrepreneurs in early-stage phase. The data was gathered with two design research methods: Cultural Probes and Semi-structured interviews. The analysis of the information collected facilitated the development of 4 insights about the entrepreneurs and an experience map to visualise and interpret their journey to create a startup. The results of this study reflected the implications of the ecosystem, the explanation of the users’ perceptions and awareness and propose a set of ideas to the local government to improve the experience of undertaking a startup in Medellín.

Pocket E-Li: Listening Assessment Made Easy

2019 ◽  
Vol 3 (1) ◽  
pp. 4
Author(s):  
Norazean Sulaiman ◽  
Nurul Nadiah Dewi Faizul Ganapathy ◽  
Wan Faizatul Azirah Ismayatim
Keyword(s):  
Mobile Application ◽  
Listening Comprehension ◽  
Teaching And Learning ◽  
Positive Response ◽  
Mobile Apps ◽  
Listening Skills ◽  
Current Technology ◽  
The Future ◽  
Level Of Understanding ◽  
Almost All

Listening skills should be given more attention as listening takes precedence over anything else when it comes to acquiring a language (Putriani, Sukirlan & Supriyadi, 2013). Even with the booming of various technology to facilitate teaching and learning of listening skills in class, the assessment conducted to identify students’ level of understanding of certain topic is still not up-to-date and not parallel with the advancement of technology. The current studies show that the use of mobile apps for listening purpose is proven to be effective in reducing students’ anxiety (Rahimi & Soleymani, 2015), sustaining students’ motivation (Read & Kukulska-Hulme, 2015), and improving students’ linguistic competencies (Ramos & Valderruten, 2017). This study is aimed to test the effectiveness of mobile application in assessing students’ listening skills. Diploma students from various faculties in UiTM Shah Alam were randomly chosen to answer listening comprehension questions via the prototype developed, named Pocket E-Li. The results demonstrate that the majority of the students provided positive response towards the implementation of mobile application for listening assessment. Almost all respondents agreed that listening assessment should be conducted via mobile application in the future. It can be concluded that listening assessment via mobile application is beneficial to students since it meets the students’ demands and needs which is equivalent with the use of current technology.

Mentalizing Imagery Therapy mobile application for family dementia caregivers: feasibility and effects on mood and caregiving

2018 ◽  
Author(s):  
Abu Sikder ◽  
Francis Yang ◽  
Rhiana Schafer ◽  
Glenna A. Dowling ◽  
Lara Traeger ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Mobile Application ◽  
Self Regulation ◽  
Pilot Trial ◽  
Depression Symptom ◽  
Structured Interviews ◽  
Physical Strain ◽  
Dementia Caregivers ◽  
Loved One ◽  
People With Dementia

Objectives: Due to psychological and physical strain, family caregivers of patients with Alzheimer’s disease and related dementias are at high risk for depression and stress related disorders. We investigated the feasibility of a mobile application (App) intervention delivering Mentalizing Imagery Therapy (MIT), which incorporates guided imagery and mindfulness, to facilitate self-regulation and increase perspective on the mental life of self and others. Method: A 4-week pilot trial of an MIT App for family caregivers of people with dementia was conducted to assess feasibility of use, mood and depression symptom benefit, and relationship changes. Semi-structured interviews were conducted at the study’s conclusion to characterize participants’ perceived benefits. Results: 80% of 21 consented participants downloaded the App, utilized it at least once, and were further analyzed. Of these participants, average usage of audio recordings was 14 ± 10 (SD) days out of 28 possible, and 29 ± 28 individual sessions. Acute improvement in mood from before to after completion of exercises was uniformly observed (p < .001), and after four weeks there was a significant increase in positive affect and a reduction in negative affect. Participants with severe levels of depression (n=3) at baseline exhibited an improvement in symptoms at 4 weeks averaging 30% (p < .05). Semi-structured interviews revealed an increase in the ability to remain “centered" despite caregiving challenges, take the perspective of the loved one, and positively reframe the caregiver experience.Conclusion: App delivery of MIT is feasible for family dementia caregivers. Results showed moderate to high usage of the app for a majority of the users, and promising improvements in mood and depression. These data provide justification for larger, controlled trials.

scholarly journals Caring for One’s Wife With Dementia—at Home: Older Husbands’ Experiences With Managing Challenges of Everyday Life

SAGE Open ◽  
2019 ◽  
Vol 9 (1) ◽  
pp. 215824401983445
Author(s):  
Linda Rykkje ◽  
Oscar Tranvåg
Keyword(s):  
Health Care ◽  
Health Care Services ◽  
Qualitative Interviews ◽  
Care Services ◽  
People With Dementia ◽  
Memory Clinics ◽  
Male Caregivers ◽  
Caregiving Roles ◽  
Caregiver Role ◽  
At Home

More than 80,000 Norwegians live with dementia. Most caregivers for people with dementia are spouses, and women outnumber men. Due to an aging population, and women’s higher risk of dementia as well as men’s increased life expectancy, the number of male caregivers will rise. There are some differences in the caregiving roles of men and women. Research suggest that males report lower burden and depression than female caregivers, but some men struggle to adjust to the caregiver role, and men are less likely to access health care services. The aim of this study is to explore the experiences of husbands engaged in caregiving for their home-dwelling spouse with dementia. This knowledge will add to the growing body of research about men in the context of dementia care and may raise gender awareness. The method is qualitative interviews with hermeneutical interpretation. The participants are five husbands recruited from two Hospital Memory Clinics in Norway. The results portray how the husbands managed their everyday challenges, and how they adapted to changes, experiences of loss and bereavement, and how they redefined personal freedom and expanded their responsibilities. Acknowledging the rewards of caregiving, the husbands found their life meaningful and they were thriving in their caregiving role. Health care personnel should recognize and respect the challenging life situation caregiving husbands may experience, calling for personnel to learn from, care for, and collaborate with them, enabling the couple to live a meaningful life together at home as long as possible.

scholarly journals Person-centered dementia care in home care services – highly recommended but still challenging to obtain: a qualitative interview study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Kari-Anne Hoel ◽  
Anne Marie Mork Rokstad ◽  
Ingvild Hjorth Feiring ◽  
Bjørn Lichtwarck ◽  
Geir Selbæk ◽  
...  
Keyword(s):  
Decision Making ◽  
Home Care ◽  
Shared Decision Making ◽  
Care Service ◽  
Home Care Services ◽  
Shared Decision ◽  
Care Services ◽  
Person Centered Care ◽  
People With Dementia ◽  
Centered Care

Abstract Background Dementia is one of the main causes of disability and dependence in older people, and people with dementia need comprehensive healthcare services, preferably in their own homes. A well-organized home care service designed for people with dementia is necessary to meet their needs for health- and social care. Therefore, it is important to gain knowledge about how people with dementia experience the home care service and if the service responds to their wishes and needs. The aim of this study was to explore the experience of home care services among people with dementia, to understand the continuity in services, how the service was adapted to people with dementia, and how the patient experienced person-centered care and shared decision-making. Methods We used a qualitative, exploratory design based on a phenomenological-hermeneutic approach and performed individual in-depth interviews with persons with dementia. A convenience sample of 12 persons with moderate to severe degrees of dementia from four Norwegian municipalities participated in the study. The interviews were conducted in February 2019. Results The findings identified that the participants appreciated the possibility to stay safely in their own homes and mostly experienced good support from staff. They expressed various views and understanding of the service and experienced limited opportunities for user involvement and individualized, tailored service. The overall theme summarizing the findings was: “It is difficult for people with dementia to understand and influence home care services, but the services facilitate the possibility to stay at home and feel safe with support from staff.” Conclusion The participants did not fully understand the organization of the care and support they received from the home care services, but they adapted to the service without asking for changes based on their needs or desires. Although person-centered care is recommended both nationally and internationally, the participants experienced little inclusion in defining the service they received, and it was perceived as unclear how they could participate in shared decision-making.

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