A. Albayrak
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46 records found
1
Experiences and Needs Regarding Information Provision in Children With Haemophilia
A Qualitative Study on Caregivers’ and Healthcare Providers’ Perspectives
In haemophilia, ever more effective treatment options leading to minimal bleeding make information provision about the disease and its symptoms and when to alert the treatment team increasingly important. However, little is known about how current information provision is perceived and what the needs are.
Aim
Gain in-depth insights into experiences and needs regarding information provision of caregivers of young children with haemophilia, and the perspectives of their healthcare providers (HCPs).
Methods
A qualitative study was conducted including 15 semi-structured interviews with caregivers and seven interviews with HCPs. Purposive sampling ensured a varied sample regarding the child's age, type and severity of haemophilia, and treatment strategy. A comprehensive thematic content analysis was subsequently conducted using several phases of coding.
Results
Three main themes were identified. First, caregivers and HCPs indicated that current disease knowledge and information provision regarding haemophilia varies and could be improved. Both groups underlined the importance of adequate information provision to support decision-making and alleviate anxiety. Second, the need for standardized, centralized and tailored information was expressed, preferably digital. Current information is experienced as fragmented and incomplete, leading to lack of structure and uncertainties. Lastly, information provision cannot exist without additional coaching by the multidisciplinary treatment team and peers.
Conclusion
Both caregivers and HCPs experience unmet needs regarding information provision as currently performed. Empowerment can be provided by standardized, centralized information tailored to disease severity and phase of life. A digital information platform with visual support, could provide a complete, up-to-date, readily available and reliable resource. ...
In haemophilia, ever more effective treatment options leading to minimal bleeding make information provision about the disease and its symptoms and when to alert the treatment team increasingly important. However, little is known about how current information provision is perceived and what the needs are.
Aim
Gain in-depth insights into experiences and needs regarding information provision of caregivers of young children with haemophilia, and the perspectives of their healthcare providers (HCPs).
Methods
A qualitative study was conducted including 15 semi-structured interviews with caregivers and seven interviews with HCPs. Purposive sampling ensured a varied sample regarding the child's age, type and severity of haemophilia, and treatment strategy. A comprehensive thematic content analysis was subsequently conducted using several phases of coding.
Results
Three main themes were identified. First, caregivers and HCPs indicated that current disease knowledge and information provision regarding haemophilia varies and could be improved. Both groups underlined the importance of adequate information provision to support decision-making and alleviate anxiety. Second, the need for standardized, centralized and tailored information was expressed, preferably digital. Current information is experienced as fragmented and incomplete, leading to lack of structure and uncertainties. Lastly, information provision cannot exist without additional coaching by the multidisciplinary treatment team and peers.
Conclusion
Both caregivers and HCPs experience unmet needs regarding information provision as currently performed. Empowerment can be provided by standardized, centralized information tailored to disease severity and phase of life. A digital information platform with visual support, could provide a complete, up-to-date, readily available and reliable resource.
Integrated Care for Older Patients
Geriatrics
Through examples of successful models, we present strategies that have been shown to reduce service use, improve well-being, and increase older adults and caregiver satisfaction. In addition, evidence is provided on supportive resources and strategies, such as care transitions, intermediate care, home hospitalization, preventive care, and social prescribing. The need to evaluate the impact of these models through patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) is emphasized, and qualitative research is presented.
Technology has an essential role in facilitating integrated care, although there are still challenges to its adoption. The importance of user-centered design and human factors is highlighted. Finally, the need to improve in training professionals to provide sustainable and effective integrated care for the older person is emphasized. ...
Through examples of successful models, we present strategies that have been shown to reduce service use, improve well-being, and increase older adults and caregiver satisfaction. In addition, evidence is provided on supportive resources and strategies, such as care transitions, intermediate care, home hospitalization, preventive care, and social prescribing. The need to evaluate the impact of these models through patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) is emphasized, and qualitative research is presented.
Technology has an essential role in facilitating integrated care, although there are still challenges to its adoption. The importance of user-centered design and human factors is highlighted. Finally, the need to improve in training professionals to provide sustainable and effective integrated care for the older person is emphasized.
Experiences of young patients with hemophilia and their caregivers
A qualitative interview study
Towards Greener ICUs
Redesigning the Use of Disposable Gloves
1.
Adapting the infection prevention protocol and behaviour of the staff;
2.
Separating infectious waste from general hospital waste;
3.
Redesigning the syringe itself;
4.
Optimising the filling process of syringes.
The final design is an optimised filling process for prefilled sterilised syringes (PFSs), based on circular strategies such as reduce, reuse, rethink and repurpose. Interventions include: eliminating a redundant sterilisation phase, reducing residual medication and changing from steam to gamma sterilisation. This resulted in decreasing the amount of waste, material, energy and water consumption, while offering similar convenience and safety for the staff and patients of the ICU. ...
1.
Adapting the infection prevention protocol and behaviour of the staff;
2.
Separating infectious waste from general hospital waste;
3.
Redesigning the syringe itself;
4.
Optimising the filling process of syringes.
The final design is an optimised filling process for prefilled sterilised syringes (PFSs), based on circular strategies such as reduce, reuse, rethink and repurpose. Interventions include: eliminating a redundant sterilisation phase, reducing residual medication and changing from steam to gamma sterilisation. This resulted in decreasing the amount of waste, material, energy and water consumption, while offering similar convenience and safety for the staff and patients of the ICU.
XR Smart Environments Design and Fruition
Personalizing Shared Spaces
The rise of urbanization, overpopulation, and resource depletion in recent years has triggered interest in developing more efficient solutions that could offer sustainable development and improve the quality of life in cities. The increasingly wider and more advanced availability of computational power throughout the anthropic space—which saw the emergence of the so-called “ubiquitous computing” paradigm—has opened new possibilities for the design of smart cities. In particular, the emergence of Extended Reality technologies (XR), such as Virtual Reality and Augmented Reality, has provided a new interface to bridge the gap between the physical and digital realms, enabling immersive experiences and interactions within Smart City environments. This paper, based on three case studies at different scales of smart environments, explores the current and prospected relevance of XR to both design and experience spaces enriched and characterized by layers of digital information and sensorial interactions.
Mapping XR Platforms
Analyzing Immersion from the Designer’s Perspective
Understanding humans are the key to developing optimal design solutions for product-service systems. In this sense, the experiential approach is in line but might go beyond typical Human Centered Design (HCD) methods in that it focuses on generating positive experiences that contribute directly to human well-being. Extended Reality (XR) showed the potential to replicate or simulate experience as a whole and gained attention from design communities. XR platforms confused design practitioners due to their fast-advancing amounts and relevant experiences. Hence, this study introduced two surveys on XR platforms to clarify which experiences they could provide and when to implement them into HCD processes. Survey 1 categorized XR platforms according to their key attributes and mapped them into the Experience Matrix. Survey 2 invented two designer personas and a fictional project to analyze barriers and strategies to implement XR platforms into design processes. Eighty-eight XR platforms were categorized into nineteen clusters, where creation and simulation had the highest numbers. Regarding implementing XR in design practices, the cost is still the key concern and there's a trade-off between software cost and assets purchased for different types of designers.
Long-term care is defined as a variety of services designed to meet a person’s health and personal care needs which help people live as independently and safely as possible when they can no longer perform everyday activities on their own. Depending on the needs and social context of the patient, long-term care can be provided in different places by different kinds of formal or informal caregivers, either at home or in an institutionalised setting, which from here on we will refer to as the nursing home. In all these fields, technology has an increasing role to play.
Proficiency From Immersion
A Human-Centered Design in Cross-Cultural Surgical Training
Ensuring surgeons are well-trained in various skills is of paramount importance to patient safety. Surgical simulators were introduced to laparoscopy training during the last 2 decades for basic skills training. The main drawback of current simulation-based laparoscopy training is their lack of true representation of the intro-operative experience. To create a complete surgical surrounding, the required amount of resources is demanding. Moreover, organizing immersive training with surgical teams burdens daily clinical routines. High-end virtual reality (VR) headsets bring an opportunity to generate an immersive virtual OR with accessible and affordable expenses. Pilot studies reveal that personalization and localization are key needs of the virtual operating room (VOR). They are therefore key in this study. The focus of this study was to explore the effect of different human factors, such as domain knowledge, culture, and familiarity of VR technologies, on the perception of VOR experience. A human-centered design approach was applied to investigate the presence and usability of a VOR. Sixty-four surgical practitioners joined the study in the Netherlands and India. The surgeons were referred to as “experts” and surgical trainees as “novices.” The VOR system we used is composed of a laparoscopic simulator, a graphic virtual OR surrounding, and an Oculus Rift VR headset. Participants conducted the “complete Lapchol” task with the VOR. Afterward, four questionnaires were used to collect subjective ratings on presence and usability. Participant’s qualitative feedback was collected using a semi-structural interview as the final stage. Results showed the surgical knowledge only affected perceived mental demand when using a VOR. The cultural difference would alter the rating on the majority of items in these questionnaires. VR experience mainly affected the judgment on presence including “quality of interface” and “reversible actions.” The interaction effects between surgical knowledge either with culture difference or with VR experience were obvious. This study demonstrated the influences of cultural differences on the perception of immersion and usability. Integrating immersive technologies such as virtual reality and augmented reality to human-centered design opens a brand new horizon for health care and similar professional training.
Macroergonomics of Patient Work
Engaging Patients in Improving Sociotechnical Context of Their Work
evaluate the broad sociotechnical system in which patient work occurs. These models can be used to improve the design and implementation of sociotechnical interventions such as patient portal and decision support technologies. Because patient work occurs over time and space, we recommend the approach of mapping the patient journey, which can be applied to improve thepatient work system and outcomes, including outcomes of importance to patients, e.g. their
experience with health care delivery organizations. ...
evaluate the broad sociotechnical system in which patient work occurs. These models can be used to improve the design and implementation of sociotechnical interventions such as patient portal and decision support technologies. Because patient work occurs over time and space, we recommend the approach of mapping the patient journey, which can be applied to improve thepatient work system and outcomes, including outcomes of importance to patients, e.g. their
experience with health care delivery organizations.
Innovating health care
Key characteristics of human-centered design
Human-centered design is about understanding human needs and how design can respond to these needs. With its systemic humane approach and creativity, human-centered design can play an essential role in dealing with today's care challenges. 'Design' refers to both the process of designing and the outcome of that process, which includes physical products, services, procedures, strategies and policies. In this article, we address the three key characteristics of human-centered design, focusing on its implementation in health care: (1) developing an understanding of people and their needs; (2) engaging stakeholders from early on and throughout the design process; (3) adopting a systems approach by systematically addressing interactions between the micro-, meso- and macro-levels of sociotechnical care systems, and the transition from individual interests to collective interests.
A digital platform for facilitating personalized dementia care in nursing homes
Formative evaluation study
Background: Care personalization is key to the well-being of people with dementia according to person-centered care. With the development of the internet of things, a large quantity of personal data can be collected securely and reliably, which has the potential to facilitate care personalization for people with dementia. Yet, there are limited assistive technologies developed for this purpose, and the user acceptance of assistive technologies is low in nursing homes. Therefore, through a data-enabled design approach, a digital platform was developed for helping the care team in a nursing home to personalize dementia care, specifically in the management of behavioral and psychological dementia symptoms. Objective: This study aimed to evaluate the digital platform in a real-life context with potential users from the following two aspects: (1) to explore if the digital platform could help with generating insights on the current state of each person with dementia and (2) to gather feedback on the digital platform from the care team. Methods: The digital platform was deployed in the nursing home for 7 weeks and the data collected were visualized and presented to the care team via the digital platform. The visualizations were analyzed by the researchers for pattern detection. Meanwhile, the care team was asked to examine the visualizations and were interviewed for the following: (1) if any insights and actions were generated from the examination, (2) the usefulness of the digital platform, and (3) the improvements they would like to see. Results: The data collected on the digital platform demonstrated its potential for pattern detection. Insights were generated by the care team and categorized into “client level,” “ward level,” and “team level.” The corresponding actions taken by the care team were classified into “investigation” and “implementation.” User acceptance varied across the care team, and three aspects of improvement for the digital platform were identified. Conclusions: By evaluating the digital platform, this study gained insights on applying data-enabled design for personalizing dementia care; besides, it offers future researchers some recommendations on how to integrate assistive technologies in the nursing home context.
Know-me
A toolkit for designing personalised dementia care
Personalisation is a crucial element in providing person-centred care for people with de-mentia. This paper presents the development and evaluation of a design toolkit to facilitate the work of designers and healthcare professionals in personalising dementia care. This toolkit, named “Know-me”, was grounded in the findings of Ergonomics in Aging, Co-design, and Data-enabled Design, derived from literature review and from the field during a four-year doctorate project. “Know-me” was designed to be easily accessible, flexible, and engaging, providing concrete and hands-on guidance for designers and healthcare professionals to use in designing for personalised dementia care. A proof-of-concept evaluation of the “Know-me” toolkit was conducted via student projects on design for dementia care. During this process, we found that “Know-me” could be adapted flexibly so that the care team could use some of the tools by themselves. A feature-by-feature comparison of the “Know-me” toolkit with similar state-of-the-art toolkits was conducted, and based upon this, the strengths and weaknesses of the “Know-me” toolkit are discussed. This preliminary study indicates that the “Know-me” toolkit is a helpful addition to the current pool of toolkits on designing for dementia care.
Aims: Statin treatment is one of the hallmarks of secondary prevention after myocardial infarction. Adherence to statins tends to be difficult and can be improved by patient education. Novel technologies such as mixed reality (MR) expand the possibilities to support this process. To assess if an MR medication-application supports patient education focused on function of statins after myocardial infarction. Methods and results: A human-centred design-approach was used to develop an MR statin tool for Microsoft HoloLens™. Twenty-two myocardial infarction patients were enrolled; 12 tested the application, 10 patients were controls. Clinical, demographic, and qualitative data were obtained. All patients performed a test on statin knowledge. To test if patients with a higher tendency to become involved in virtual environments affected test outcome in the intervention group, validated Presence- and Immersive Tendency Questionnaires (PQ and ITQ) were used. Twenty-two myocardial infarction patients (ST-elevation myocardial infarction, 18/22, 82%) completed the study. Ten out of 12 (83%) patients in the intervention group improved their statin knowledge by using the MR application (median 8 points, IQR 8). Test improvement was mainly the result of increased understanding of statin mechanisms in the body and secondary preventive effects. A high tendency to get involved and focused in virtual environments was moderately positive correlated with better test improvement (r = 0.57, P < 0.05). The median post-test score in the control group was poor (median 6 points, IQR 4). Conclusions: An MR statin education application can be applied effectively in myocardial infarction patients to explain statin function and importance.
Immersive Virtual Reality (VR) laparoscopy simulation is emerging to enhance the attractiveness and realism of surgical procedural training. This study analyses the usability and presence of a Virtual Operating Room (VOR) setup via user evaluation and sets out the key elements for an immersive environment during a laparoscopic procedural training.In the VOR setup, a VR headset displayed a 360-degree computer-generated Operating Room (OR) around a VR laparoscopic simulator during laparoscopy procedures. Thirty-seven surgeons and surgical trainees performed the complete cholecystectomy task in the VOR. Questionnaires (i.e., Localized Postural Discomfort scale, Questionnaire for Intuitive Use, NASA-Task Load Index, and Presence Questionnaire) followed by a semi-structured interview were used to collect the data.The participants could intuitively adapt to the VOR and were satisfied when performing their tasks (M=3.90, IQR=0.70). The participants, particularly surgical trainees, were highly engaged to accomplish the task. Despite the higher mental workload on four subscales (p < 0.05), the surgical trainees had a lower effort of learning (4 vs 3.33, p < 0.05) compared to surgeons. The participants experienced very slight discomfort in seven body segments (0.59-1.16). In addition, they expected improvements for team interaction and personalized experience within the setup.The VOR showed potential to become a useful tool in providing immersive training during laparoscopy procedure simulation based on the usability and presence noted in the study. Future developments of user interfaces, VOR environment, team interaction and personalization should result in improvements of the system.
Personalising Management of Behavioural and Psychological Symptoms of Dementia in Nursing Homes
Exploring the Synergy of Quantitative and Qualitative Data
Researchers have been exploring how to manage Behavioural and Psychological Symptoms of Dementia (BPSD) in a personalised way, meanwhile, assistive technologies have been developed to collect a variety of personal data. This urges more research in investigating the combination of: data collected by the care team, which are mainly qualitative; and data collected by assistive technologies, the majority of which are quantitative. Previous studies, however, have yet to explore if and how a combination of quantitative and qualitative data could facilitate the care team to better understand each resident with dementia in the nursing home context for personalised BPSD management. Guided by a Research through Design approach, a prototype for collecting and visualising the quantitative and qualitative data towards personalised BPSD management was developed together with the care team. Via developing this prototype, knowledge was gained in what types of data could be combined for personalised BPSD management in nursing homes, what are their values, how to collect and present them, and how to introduce them in the working routine of the care team for analysis. The main findings suggest that the types of data to be collected could be unique for each resident with dementia; the quantitative and qualitative data are of value to each other during data collection and analysis; data collection should be quick and standardised yet flexible for the care team; the overview page is vital for data presentation; and user scenarios could be created to nudge the care team to analyse the data at certain points of their working routine. In general, a combination of qualitative data and quantitative data could help the care team to discover more insights about each resident with dementia and thus improve the current practice of personalised BPSD management.
The art of Handing Over
Improving the Patient Handovers at the Intensive Care Unit by a Human-Centred Design Approach
healthcare teams who strongly rely on teamwork and communication. Patient handovers are scheduled moments of communication where information between different healthcare professionals is exchanged. However, patient handovers involve failures as well, which can be the result of educational, psychological, and organizational factors. To discover how design can overcome these failures in information sharing, first observations and interviews within
the ICU were done. The aim of the observations was to reveal everyday
practices of the ICU team. The purpose of the interviews was to get a deeper understanding of their personal experience with the different patient handover moments. The observations provided insights in the interactions between doctors, nurses, and both groups. The interviews revealed the experiences ICU
doctors and nurses have with patient handovers. The obtained insights were captured in two work models showing the handover activities, touchpoints, and experienced qualities and pain points over time. Based on that, a
design was iteratively created in co-creation with the ICU team and evaluated within an ICU. All in all, it was discovered that a design should facilitate more structure, overview, and reflection. The human-centred design approach in combination with Research through Design (RtD) turned out to be key during the study. ...
healthcare teams who strongly rely on teamwork and communication. Patient handovers are scheduled moments of communication where information between different healthcare professionals is exchanged. However, patient handovers involve failures as well, which can be the result of educational, psychological, and organizational factors. To discover how design can overcome these failures in information sharing, first observations and interviews within
the ICU were done. The aim of the observations was to reveal everyday
practices of the ICU team. The purpose of the interviews was to get a deeper understanding of their personal experience with the different patient handover moments. The observations provided insights in the interactions between doctors, nurses, and both groups. The interviews revealed the experiences ICU
doctors and nurses have with patient handovers. The obtained insights were captured in two work models showing the handover activities, touchpoints, and experienced qualities and pain points over time. Based on that, a
design was iteratively created in co-creation with the ICU team and evaluated within an ICU. All in all, it was discovered that a design should facilitate more structure, overview, and reflection. The human-centred design approach in combination with Research through Design (RtD) turned out to be key during the study.
Background: Patient education is crucial in the secondary prevention of cardiovascular disease. Novel technologies such as augmented reality or mixed reality expand the possibilities for providing visual support in this process. Mixed reality creates interactive digital three-dimensional (3D) projections overlaying virtual objects on the real-world environment. While augmented reality only overlays objects, mixed reality not just overlays but anchors virtual objects to the real world. However, research on this technology in the patient domain is scarce. Objective: The aim of this study was to understand how patients perceive information provided after myocardial infarction and examine if mixed reality can be supportive in this process. Methods: In total, 12 patients that experienced myocardial infarction and 6 health care professionals were enrolled in the study. Clinical, demographic, and qualitative data were obtained through semistructured interviews, with a main focus on patient experiences within the hospital and the knowledge they gained about their disease. These data were then used to map a susceptible timeframe to identify how mixed reality can contribute to patient information and education. Results: Knowledge transfer after myocardial infarction was perceived by patients as too extensive, not personal, and inconsistent. Notably, knowledge on anatomy and medication was minimal and was not recognized as crucial by patients, whereas professionals stated the opposite. Patient journey analysis indicated the following four critical phases of knowledge transfer: at hospital discharge, at the first outpatient visit, during rehabilitation, and during all follow-up outpatient visits. Important patient goals were understanding the event in relation to daily life and its implications on resuming daily life. During follow-up, understanding physical limitations and coping with the condition and medication side effects in daily life emerged as the most important patient goals. The professionals' goals were to improve recovery, enhance medication adherence, and offer coping support. Conclusions: There is a remarkable difference between patients' and professionals' goals regarding information and education after myocardial infarction. Mixed reality may be a practical tool to unite perspectives of patients and professionals on the disease in a more even manner, and thus optimize knowledge transfer after myocardial infarction. Improving medication knowledge seems to be a feasible target for mixed reality. However, further research is needed to create durable methods for education on medication through mixed reality interventions.