Europe’s aging population is leading to a growing number of people affected by chronic disease, which will continue over the coming decades. Healthcare systems are under pressure to deliver appropriate care, partly due to the burden imposed on their limited financial and human resources by the growing number of people with (multiple) chronic diseases. Therefore, there is a strong call for patient self-management to meet these patients’ healthcare needs. While many patients experience medication self-management as difficult, it poses additional challenges for people with limited health literacy. This thesis aims to explore the needs of patients with a chronic disease and limited health literacy regarding medication self-management and how support for medication self-management can be tailored to those needs.
The uptake of eRehabilitation programs in stroke care is insufficient, despite the growing availability. The aim of this study was to explore which factors influence the uptake of eRehabilitation in stroke rehabilitation, among stroke patients, informal caregivers, and healthcare professionals. A qualitative focus group study with eight focus groups (6–8 participants per group) was conducted: six with stroke patients/informal caregivers and two with healthcare professionals involved in stroke rehabilitation (rehabilitation physicians, physical therapists, occupational therapists, psychologists, managers). Focus group interviews were audiotaped, transcribed in full, and analyzed by direct content analysis using the implementation model of Grol. Results Thirty-two patients, 15 informal caregivers, and 13 healthcare professionals were included. A total of 14 influencing factors were found, grouped to 5 of the 6 levels of the implementation model of Grol (Innovation, Organizational context, Individual patient, Individual professional, and Economic and political context). Most quotes of patients, informal caregivers, and healthcare professionals were classified to factors at the level of the Innovation (e.g., content, attractiveness, and feasibility of eRehabilitation programs). In addition, for patients, relatively many quotes were classified to factors at the level of the individual patient (e.g., patients characteristics as fatigue and the inability to understand ICT-devices), and for healthcare professionals at the level of the organizational context (e.g., having sufficient time and the fit with existing processes of care). Although there was a considerable overlap in reported factors between patients/informal caregivers and healthcare professionals when it concerns eRehabilitation as innovation, its seems that patients/informal caregivers give more emphasis to factors related to the individual patient, whereas healthcare professionals emphasize the importance of factors related to the organizational context. This difference should be considered when developing an implementation strategy for patients and healthcare professionals separately. https://doi.org/10.1186/s13012-018-0827-5
MULTIFILE
Background: end-of-life care is not always in line with end-of-life preferences, so patients do not always die at their preferred place of death (PPD). This study aims to identify factors associated with patients' PPD and changes in PPD. Methods: we prospectively collected data on PPD at four time points within 6 months from 230 acutely hospitalised older patients who were part of the control group in a stepped-wedge randomised controlled trial. Associations between patient characteristics and preferences were calculated using multivariable (multinomial) logistic regression analysis. Results: the mean age of participants was 80.7 years. 47.8% of the patients had no PPD at hospital admission. Patients previously admitted to hospital preferred to die at home (home versus no preference: odds ratio [OR] 2.38, 95% confidence interval [CI] 1.15-4.92; home versus healthcare facility: OR 3.25, 95% CI 1.15-9.16). Patients with more chronic diseases preferred the healthcare facility as their PPD (healthcare facility versus no preference: OR 1.33, 95% CI 1.09-1.61; healthcare facility versus home: OR 1.21, 95% CI 1.00-1.47). 32 of 65 patients changed their preference during follow-up, and most of these had no PPD at hospital admission (home versus no preference: OR 0.005, 95% CI ≤0.001-0.095) and poorer self-rated well-being (OR 1.82, 95% CI 1.07-3.08). Conclusions: almost half of the patients had no PPD at baseline. Previous hospital admission, having more chronic diseases and living alone are associated with having a PPD. Introducing PPD could make older people aware of PPD and facilitate optimal palliative care.
Physical rehabilitation programs revolve around the repetitive execution of exercises since it has been proven to lead to better rehabilitation results. Although beginning the motor (re)learning process early is paramount to obtain good recovery outcomes, patients do not normally see/experience any short-term improvement, which has a toll on their motivation. Therefore, patients find it difficult to stay engaged in seemingly mundane exercises, not only in terms of adhering to the rehabilitation program, but also in terms of proper execution of the movements. One way in which this motivation problem has been tackled is to employ games in the rehabilitation process. These games are designed to reward patients for performing the exercises correctly or regularly. The rewards can take many forms, for instance providing an experience that is engaging (fun), one that is aesthetically pleasing (appealing visual and aural feedback), or one that employs gamification elements such as points, badges, or achievements. However, even though some of these serious game systems are designed together with physiotherapists and with the patients’ needs in mind, many of them end up not being used consistently during physical rehabilitation past the first few sessions (i.e. novelty effect). Thus, in this project, we aim to 1) Identify, by means of literature reviews, focus groups, and interviews with the involved stakeholders, why this is happening, 2) Develop a set of guidelines for the successful deployment of serious games for rehabilitation, and 3) Develop an initial implementation process and ideas for potential serious games. In a follow-up application, we intend to build on this knowledge and apply it in the design of a (set of) serious game for rehabilitation to be deployed at one of the partners centers and conduct a longitudinal evaluation to measure the success of the application of the deployment guidelines.
During the coronavirus pandemic, the use of eHealth tools became increasingly demanded by patients and encouraged by the Dutch government. Yet, HBO health professionals demand clarity on what they can do, must do, and cannot do with the patients’ data when using digital healthcare provision and support. They often perceive the EU GDPR and its national application as obstacles to the use of eHealth due to strict health data processing requirements. They highlight the difficulty of keeping up with the changing rules and understanding how to apply them. Dutch initiatives to clarify the eHealth rules include the 2021 proposal of the wet Elektronische Gegevensuitwisseling in de Zorg and the establishment of eHealth information and communication platforms for healthcare practitioners. The research explores whether these initiatives serve the needs of HBO health professionals. The following questions will be explored: - Do the currently applicable rules and the proposed wet Elektronische Gegevensuitwisseling in de Zorg clarify what HBO health practitioners can do, must do, and cannot do with patients’ data? - Does the proposed wet Elektronische Gegevensuitwisseling in de Zorg provide better clarity on the stakeholders who may access patients’ data? Does it ensure appropriate safeguards against the unauthorized use of such data? - Does the proposed wet Elektronische Gegevensuitwisseling in de Zorg clarify the EU GDPR requirements for HBO health professionals? - Do the eHealth information and communication platforms set up for healthcare professionals provide the information that HBO professionals need on data protection and privacy requirements stemming from the EU GDPR and from national law? How could such platforms be better adjusted to the HBO professionals’ information and communication needs? Methodology: Practice-oriented legal research, semi-structured interviews and focus group discussions will be conducted. Results will be translated to solutions for HBO health professionals.
This project addresses the fundamental societal problem that encryption as a technique is available since decades, but has never been widely adopted, mostly because it is too difficult or cumbersome to use for the public at large. PGP illustrates this point well: it is difficult to set-up and use, mainly because of challenges in cryptographic key management. At the same time, the need for encryption has only been growing over the years, and has become an urgent problem with stringent requirements – for instance for electronic communication between doctors and patients – in the General Data Protection Regulation (GDPR) and with systematic mass surveillance activities of internationally operating intelligence agencies. The interdisciplinary project "Encryption for all" addresses this fundamental problem via a combination of cryptographic design and user experience design. On the cryptographic side it develops identity-based and attribute-based encryption on top of the attribute-based infrastructure provided by the existing IRMA-identity platform. Identity-based encryption (IBE) is a scientifically well-established technique, which addresses the key management problem in an elegant manner, but IBE has found limited application so far. In this project it will be developed to a practically usable level, exploiting the existing IRMA platform for identification and retrieval of private keys. Attribute-based encryption (ABE) has not reached the same level of maturity yet as IBE, and will be a topic of further research in this project, since it opens up attractive new applications: like a teacher encrypting for her students only, or a company encrypting for all employees with a certain role in the company. On the user experience design side, efforts will be focused on making these encryption techniques really usable (i.e., easy to use, effective, efficient, error resistant) for everyone (e.g., also for people with disabilities or limited digital skills). To do so, an iterative, human-centred and inclusive design approach will be adopted. On a fundamental level, scientific questions will be addressed, such as how to promote the use of security and privacy-enhancing technologies through design, and whether and how usability and accessibility affect the acceptance and use of encryption tools. Here, theories of nudging and boosting and the unified theory of technology acceptance and use (known as UTAUT) will serve as a theoretical basis. On a more applied level, standards like ISO 9241-11 on usability and ISO 9241-220 on the human-centred design process will serve as a guideline. Amongst others, interface designs will be developed and focus groups, participatory design sessions, expert reviews and usability evaluations with potential users of various ages and backgrounds will be conducted, in a user experience and observation laboratory available at HAN University of Applied Sciences. In addition to meeting usability goals, ensuring that the developed encryption techniques also meet national and international accessibility standards will be a particular point of focus. With respect to usability and accessibility, the project will build on the (limited) usability design experiences with the mobile IRMA application.
