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.”

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.

Double the Trouble or Twice as Nice?

2014 ◽  
Vol 6 (4) ◽  
pp. 18-26
Author(s):  
Lisa Haskel
Keyword(s):  
Action Research ◽  
Research Methods ◽  
Participatory Design ◽  
Design Research ◽  
Early Stage ◽  
Point Of View ◽  
Academic Researcher ◽  
Situated Practice ◽  
Definition Of ◽  
Research And Design

Participatory Design (PD) is an extremely productive field of practice with great benefits to communities and individuals. It is a stimulating and exciting way of working that brings new relationships and experiences to all concerned. However, as a collaborative and situated practice it brings with it a number of challenges for the early-stage academic researcher. This paper reflects on some of the challenges of defining participation in the dual areas of production and research from the point of view of a practice-based doctoral researcher in PD. The contributions of some research methods in addressing these challenges, notably Action Research and Design Research, are discussed. In response, it is suggested that researchers might benefit from differentiating the roles of participants in production and research. It is further suggested that this two-fold definition of participation may be possible without compromising projects' ethical integrity.

Using Personas with Visual Impairments to Explore the Design of an Accessible Self-Driving Vehicle Human-Machine Interface

2021 ◽  
Vol 65 (1) ◽  
pp. 337-341
Author(s):  
Julian Brinkley
Keyword(s):  
Participatory Design ◽  
Design Research ◽  
Low Vision ◽  
Human Machine Interface ◽  
User Centered Design ◽  
Persons With Disabilities ◽  
Automotive Systems ◽  
Machine Interface ◽  
Persona Development ◽  
User Centered

Recent reports have suggested that most self-driving vehicle technology being developed is not currently accessible to users with disabilities. We purport that this problem may be at least partially attributable to knowledge gaps in practice-oriented user-centered design research. Missing, we argue, are studies that demonstrate the practical application of user-centered design methodologies in capturing the needs of users with disabilities in the design of automotive systems specifically. We have investigated user-centered design, specifically the use of personas, as a methodological tool to inform the design of a self-driving vehicle human-machine interface for blind and low vision users. We then explore the use of these derived personas in a series of participatory design sessions involving visually impaired co-designers. Our findings suggest that a robust, multi-method UCD process culminating with persona development may be effective in capturing the conceptual model of persons with disabilities and informing the design of automotive system.

scholarly journals INVESTIGATING THE INNOVATION IMPACTS OF USER-CENTRED AND PARTICIPATORY STRATEGIES ADOPTED BY EUROPEAN LIVING LABS

2019 ◽  
Vol 23 (05) ◽  
pp. 1950048 ◽  
Author(s):  
CLAUDIO DELL’ERA ◽  
PAOLO LANDONI ◽  
SARA JANE GONZALEZ
Keyword(s):  
Participatory Design ◽  
Design Research ◽  
Real Life ◽  
Performance Outcomes ◽  
Innovation Performance ◽  
Digital Platforms ◽  
User Behaviors ◽  
Project Outcome ◽  
Significant Difference ◽  
Living Labs

The advantages of innovation strategies that are based on collaboration with users have been demonstrated by several studies, which have highlighted emerging shifts from a user-centred approach (in which the user is a subject) to a participatory one (in which the user is a partner). The Living Lab methodology, which is a design research methodology aimed at co-creating innovation through the involvement of aware users in a real-life setting, can provide new perspectives in the passage from user-centred to participatory design. In this paper, answers received by 92 Living Labs belonging to the European Network of Living Labs are used to (i) investigate the strategies adopted by Living Labs to involve users in their innovation processes and (ii) analyse the relationships between strategies and achieved innovation performance outcomes. The user-centred strategy positively impacts all innovation performance outcomes (e.g., time, cost, quality and go to market), but only time performance shows a significant difference between non-adopters and adopters. Observing user behaviors, capturing user insights and receiving user feedback positively impact the efficiency of innovation projects and allow them to be concluded in a timely manner. The participatory strategy shows that adopters are characterised by a significantly higher percentage of projects that are able to reach the market by moving from the research stage to the innovation stage. Practices such as co-design, collaboration through digital platforms and development of experience prototypes allow for the achievement of better results in terms of quality and, consequently, marketability of the project outcome, but reduce the efficiency of the innovation project in terms of time and cost.

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.

Involving people with dementia and their informal caregivers in the development process of assistive technology: Description and evaluation of a user-centered design (Preprint)

2020 ◽  
Author(s):  
Iris A.G.M. Geerts ◽  
Liselore J.A.E Snaphaan ◽  
Inge M.B. Bongers
Keyword(s):  
Focus Groups ◽  
Assistive Technology ◽  
Field Study ◽  
Development Process ◽  
Technology Development ◽  
Informal Caregivers ◽  
Assistive Technologies ◽  
User Centered Design ◽  
People With Dementia ◽  
User Centered

BACKGROUND Despite the potential value of assistive technology to support people with dementia (PWD) in everyday activities, use of these technologies is still limited. To ensure that assistive technologies better address the specific needs and daily context of PWD and their informal caregivers, it is particularly important to involve them in all different phases of assistive technology development. The literature rarely describes the involvement of PWD throughout the development process of assistive technologies, which makes it difficult to further reflect on and improve active involvement of PWD. OBJECTIVE This two-part study aimed to gather insights on the user-centered design (UCD) applied in the development process of the alpha prototype of the serious game PLAYTIME by describing the methods and procedures of the UCD as well as evaluating the UCD from the perspective of all involved stakeholders. METHODS The first three phases of the user-driven Living Lab of Innovate Dementia 2.0 were applied to directly involve PWD and their informal caregivers through qualitative research methods, including focus groups and a context-field study, in the development of the alpha prototype of PLAYTIME from exploration to design to testing. After the testing phase, a total number of 18 semi-structured interviews were conducted with PWD, their informal caregivers and the project members of PLAYTIME to evaluate the applied UCD from the perspective of all involved stakeholders. The interviews addressed five of the principles for successful UCD and the appropriateness of the different methods used in the focus groups and context-field study. RESULTS Results of the interviews focused, amongst others, on the level of involvement of PWD and their informal caregivers in the development process, the input provided by PWD and their informal caregivers, the value of early prototyping, continuous iterations of design solutions and in-context testing, the role of dementia care professionals in the multidisciplinary project team, and the appropriateness of open- and closed-ended questions for obtaining input from PWD and their informal caregivers. CONCLUSIONS The description and evaluation of the UCD applied in the development process of the alpha prototype of PLAYTIME resulted in several insights on the relevance of UCD for all involved stakeholders as well as how PWD can be involved in the subsequent phases of usable and meaningful assistive technology development.

Translanguaging design in a third grade Chinese Language Arts class

2021 ◽  
Vol 0 (0) ◽  
Author(s):  
Zhongfeng Tian
Keyword(s):  
Language Arts ◽  
Bilingual Education ◽  
Participatory Design ◽  
Dual Language ◽  
Design Research ◽  
Chinese Language ◽  
Bilingual Learners ◽  
Allocation Policy ◽  
Link Type ◽  
Dual Language Bilingual Education

Abstract Traditionally strict language separation policies in dual language bilingual education (DLBE) programs reflect parallel monolingualism and have been criticized as failing to recognize the sociolinguistic realities of bilingual students (García, Ofelia & Angel M. Y. Lin. 2017. Translanguaging in bilingual education. In Ofelia García, Angel M. Y. Lin & Stephen May (eds.), Bilingual and multilingual education, 117–130. Cham: Springer International Publishing). To recognize the dynamic nature of bilingualism and leverage bilingual learners’ full semiotic and linguistic repertoire as a resource, this study looks at how to strategically and purposefully develop flexible and multilingual educational spaces in a third grade Chinese Language Arts (CLA) class in a Mandarin-English DLBE program in the New England area, U.S. Drawing upon Sánchez, María Teresa (Maite), Ofelia García & Cristian Solorza. 2018. Reframing language allocation policy in dual language bilingual education. Bilingual Research Journal 41(1). 37–51. https://doi.org/10.1080/15235882.2017.1405098, translanguaging allocation policy framework, the researcher and the teacher co-designed and implemented translanguaging documentation, translanguaging rings, and translanguaging transformation spaces in the CLA class throughout the school year of 2018–19. Taking the form of participatory design research (Bang, Megan & Shirin Vossoughi. 2016. Participatory design research and educational justice: Studying learning and relations within social change making. Cognition and Instruction 34(3). 173–193. https://doi.org/10.1080/07370008.2016.1181879), this collaborative inquiry demonstrates that translanguaging pedagogies could promote student engagement, contribute to their academic learning, and build home-school connections. It aims to provide authentic, sustainable knowledge for both researchers and practitioners to better serve bilingual learners in DLBE programs.

Automated Insulin Delivery Systems: Today, Tomorrow and User Requirements

2021 ◽  
pp. 193229682110299
Author(s):  
Marga Giménez ◽  
Ignacio Conget ◽  
Nick Oliver
Keyword(s):  
Lived Experience ◽  
Diabetes Management ◽  
Real Life ◽  
Insulin Delivery ◽  
Qualitative Assessment ◽  
Management Tool ◽  
Diabetes Distress ◽  
Glycemic Targets

Automated insulin delivery (AID) is the most recent advance in type 1 diabetes (T1D) management. It has the potential to achieve glycemic targets without disabling hypoglycemia, to improve quality of life and reduce diabetes distress and burden associated with self-management. Several AID systems are currently licensed for use by people with T1D in Europe, United States, and the rest of the world. Despite AID becoming a reality in routine clinical practice over the last few years, the commercially hybrid AID and other systems, are still far from a fully optimized automated diabetes management tool. Implementation of AID systems requires education and support of healthcare professionals taking care of people with T1D, as well as users and their families. There is much to do to increase usability, portability, convenience and to reduce the burden associated with the use of the systems. Co-design, involvement of people with lived experience of T1D and robust qualitative assessment is critical to improving the real-world use of AID systems, especially for those who may have greater need. In addition to this, information regarding the psychosocial impact of the use of AID systems in real life is needed. The first commercially available AID systems are not the end of the development journey but are the first step in learning how to optimally automate insulin delivery in a way that is equitably accessible and effective for people living with T1D.

Managing User-Centered Design Activities in Distributed Agile Development

2021 ◽  
Author(s):  
Sultan Alyahya ◽  
Ohoud Almughram
Keyword(s):  
Participatory Design ◽  
Agile Development ◽  
Design Teams ◽  
User Centered Design ◽  
Management Tools ◽  
Daily Work ◽  
Development Teams ◽  
Design Activities ◽  
Computer Based ◽  
User Centered

Abstract The integration of user-centered design (UCD) activities into agile information systems development has become more popular recently. Despite the fact that there are many ways the merging of UCD activities into agile development can be carried out, it has been widely recognized that coordinating design activities with development activities is one of the most common problems, especially in distributed environments where designers, developers and users are spread over several sites. The main approach to coordinate UCD activities with distributed agile development is the use of informal methods (e.g. communication through using video conference tools). In addition to the temporal, geographical and socio-cultural barriers associated with this type of methods, a major limitation is a lack of awareness of how UCD activities and development activities affect each other. Furthermore, some agile project management tools are integrated with design platforms but fail to provide the necessary coordination that helps team members understand how the design and development activities affect their daily work. This research aims to support the effective management of integrating UCD activities into distributed agile development by (i) identifying the key activity dependencies between UX design teams and development teams during distributed UCD/agile development and (ii) designing a computer-based system to provide coordination support through managing these activity dependencies. In order to achieve these objectives, two case studies are carried out. Our findings revealed 10 main dependencies between UCD design teams and development teams as shown by six types of activity. In addition, the participatory design approach shows that developing a computer-based system to manage seven of these selected dependencies is achievable.

scholarly journals OP0319-PARE SEE ME HEAR ME: AN ANCA-ASSOCIATED VASCULITIS PATIENT CO-CREATION INITIATIVE

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 196.1-197
Author(s):  
S. Perera ◽  
D. Krafcsik ◽  
P. Rutherford
Keyword(s):  
Lived Experience ◽  
Health Care Professionals ◽  
Real Life ◽  
Calcium Pyrophosphate ◽  
Small Vessel Vasculitis ◽  
Emotional Impact ◽  
Online Platform ◽  
Calcium Pyrophosphate Deposition Disease ◽  
Anca Associated Vasculitis ◽  
Patient Association

Background:ANCA-associated Vasculitis (AAV) is a rare, severe small vessel vasculitis that affects multiple organs with a high acute mortality risk. As every patient presents differently, diagnosis is often delayed. Although treatments exist, responses vary, and remission is often not achieved or sustained. From the time of initial diagnosis onwards, patients suffer from an impaired quality of life. Coping with pain, fatigue, ongoing symptoms and combating challenges becomes a complex task and patients may be challenged in how best to communicate these emotions with health care professionals. We aimed to develop an initiative with Art and Voice, that would seek to empower people living with AAV and their carers in feeling understood, seen and heard in a meaningful way. This would invite a collective understanding of ‘how people make sense of key life experiences and what it means to them’ by creating a common language to address poorly addressed issues.Objectives:This project aims to provide a voice to patients to express personal experiences and complexity of everyday living and empower people to feel in control of their own health through an online platform. It should also allow practitioners to gain new awareness about issues faced by their patients, to better understand the relationships between caring and curing, hearing and listening.Methods:We collaborated with 10 patient association groups representatives, 17 AAV patients and 9 of their carers across 7 European countries. A series of workshops were set up to discuss issues faced and aid the subsequent production of a range of materials designed to provide clear, comprehensive content that would help individuals cope with the physical and emotional impact of AAV from diagnosis to living with it. This work was supported by a digital artist who is a rheumatologist living with vasculitis.Results:The co-creation of patient information materials featuring real life patients was successful and led to the development of a creative initiative called SEE ME.HEAR ME with an online platformwww.myancavasculitis.com. This includes: (1) an awareness programme featuring artwork created by the digital artist and advised by the patients which captures the essence of AAV from the patients view (see Figure). (2) a series of first-hand patient and carer stories capturing their authentic voice on ‘what it is like to live with the disease’. (3) extensive written content designed to fill information gaps around AAV diagnosis, investigations and treatment and what to expect during clinical follow up. The platform supports patients in asking questions and seeking information while signposting them to their own healthcare professional for advice and their local country patient association for support.Table 1.Sensitivities and specificities of examinations in gout and calcium pyrophosphate deposition diseaseConclusion:People with AAV need support throughout life, the profound psychosocial influence from illness makes the lived experience, challenging. SEE ME. HEAR ME online patient platform aims to generate awareness around AAV, improve physician and patient dialog, and enhance people’s experiences of living and coping with the disease. In addition it provides support for carers and giving valuable insights to friends, family and the general public about what the lived experience with AAV looks like.Acknowledgments:We wish to thank all European patients and patient association leads who worked on this projectDisclosure of Interests:Shanali Perera Consultant of: Vifor Pharma, Dijana krafcsik Employee of: Vifor Pharma, Peter Rutherford Shareholder of: Vifor Pharma, Employee of: Vifor Pharma, Baxter Healthcare

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