Purpose: To describe nurses' support interventions for medication adherence, and patients' experiences and desired improvements with this care. Patients and methods: A two-phase study was performed, including an analysis of questionnaire data and conducted interviews with members of the care panel of the Netherlands Patients Federation. The questionnaire assessed 14 types of interventions, satisfaction (score 0-10) with received interventions, needs, experiences, and desired improvements in nurses' support. Interviews further explored experiences and improvements. Data were analyzed using descriptive statistics and a thematic analysis approach. Results: Fifty-nine participants completed the questionnaire, and 14 of the 59 participants were interviewed. The satisfaction score for interventions was 7.9 (IQR 7-9). The most common interventions were: "noticing when I don't take medication as prescribed" (n = 35), "helping me to find solutions to overcome problems with using medications" (n = 32), "helping me with taking medication" (n = 32), and "explaining the importance of taking medication at the right moment" (n = 32). Fifteen participants missed ≥1 of the 14 interventions. Most mentioned the following: "regularly asking about potential problems with medication use" (33%), "regularly discussing whether using medication is going well" (29%), and "explaining the importance of taking medication at the right moment" (27%). Twenty-two participants experienced the following as positive: improved self-management of adequate medication taking, a professional patient-nurse relationship to discuss adherence problems, and nurses' proactive attitude to arrange practical support for medication use. Thirteen patients experienced the following as negative: insufficient timing of home visits, rushed appearance of nurses, and insufficient expertise about side effects and taking medication. Suggested improvements included performing home visits on time, more time for providing support in medication use, and more expertise about side effects and administering medication. Conclusion: Overall, participants were satisfied, and few participants wanted more interventions. Nurses' support improved participants' self-management of medication taking and enabled patients to discuss their adherence problems. Adequately timed home visits, more time for support, and accurate medication-related knowledge are desired.
Background: This paper describes the Co-Care-KIT, a reflective toolkit designed to provide insights into the diverse experiences of home-based informal caregivers during the delivery of care to a relative or loved one.Objective: The aim of this study was to evaluate the toolkit, including a custom-designed journal, tools for photography-based experience sampling, and heart rate tracking, which enables caregivers to collect and reflect on their positive and negative daily experiences in situ.Methods: A 2-week field study with informal caregivers (N=7) was conducted to evaluate the Co-Care-KIT and to capture their daily personal emotional experiences. The collected data samples were analyzed and used for collaborative dialogue between theresearcher and caregiver.Results: The results suggest that the toolkit (1) increased caregivers’ awareness of their own well-being through in situ reflection on their experiences; (2) empowered caregivers to share their identities and experiences as a caregiver within their social networks; (3) enabled the capturing of particularly positive experiences; and (4) provided caregivers reassurance with regards to their ownmental health.Conclusion: By enabling capturing and collaborative reflection, the kit helped to gain a new understanding of caregivers’ day-to-day needs and emotional experiences.
MULTIFILE
Introduction: Patient information holds an important role in knee arthroplasty surgery regarding patients’ expectations and outcomes after surgery. The purpose of the present study was to explore the experiences and opinions of patients undergoing knee arthroplasty (KA) surgery on an information brochure provided preoperatively. Methods: A qualitative case study of 8 patients using individual semi-structured interviews was conducted to explore patients’ opinions on an information brochure in KA surgery. Results: Patients rated the brochure as good and recommended its use. Unsatisfactory information regarding wound healing, pain expectations, postoperative exercises and use of walking aids was reported. Patients stated that the table of contents was insufficient and the size of the brochure (A4-format) too large. Patients reported to have no need for additional digital sources (e.g. applications, websites). Conclusion: These opinions support the use of an information brochure. The reported opinions were used to improve the brochure. Future research should focus on the improvement of information sources by involving patients (and other users) in the development process in which the information is tailored towards patient needs.
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.
Societal changes force hospitals to improve their patient journeys. And although hospitals and hotels do differ on quite some aspects, there are also a lot of similarities. Moreover, hotels are known for doing their utmost to please their guests and to focus on their guest experiences. Therefore, hospitals are looking at what they can learn form the hotel industry. The Antoniushove is anxious to retain its high quality and where possible to improve it. That is why, together with the Hotelschool, they want to investigate where the patient journey can be improved. Medical students are ‘critical thinkers’ as they are educated in an academic and evidence based environment. Hotelschool students are generally seen as having excellent ‘soft skills’ like creativity and problem solving skills. Critical thinking and soft skills are both seen as important 21st century skills. This research is a first exploration of where there are possibilities for improvement on patient journeys. Couples existing of one medical student and one hotelschool student will form a team and follow breast and colorectal patients during their hospital visit. This combination of students has never occurred before in such a research. It will allow students from both backgrounds to look at the patient journey though the eyes of the other and to learn form each other’s competences. Main research methods to be applied will be shadowing, guided tours and interviews, all of course with informed consent. Medical staff from the Antoniushove and research experts form the hotelschool will supervise the research. This research is a preliminary research for a bigger research and should result in grant proposal for the follow-up research.
Being diagnosed with incurable cancer often leads to experiences of contingency and to existential concerns when patients struggle to search for meaning. The aims of this project are to (1) investigate how Art-Based Learning(ABL) – an art education method for experiencing art – has the potential to affect meaning-making processes of cancer patients in palliative care; (2) to investigate how to integrate this in (patient) education programs; (3) to enable health and art professionals to extent their capabilities to care for PC patients. This project builds on previous research on contingent experiences and narrative meaning-making, and on a pilot-study regarding the feasibility of carrying out ABL in PC. Aims and questions have been developed in a long-lasting process of problem analysis with PC and art education professionals, patients, and researchers. We will a) conduct participatory research to make an inventory of considerations that play a role in designing an art exhibition for the purpose of ABL among patients with advanced cancer, resulting in a manual to be used in future practice and research; b) conduct an explorative study and evaluate which factors hinder and promote patients’ meaning- making processes in online/on-site interventions; c) conduct a formal analysis of patients’ experiences with regards to meaning-making; d) formally compile a full list of conclusion and advices and embed the result in a new educational program for PC and art education professionals. This project is led by the professorship Art education as Critical Tactics(ArtEZ University of the Arts) and is carried out by a consortium of experts and complementary partners: University of Amsterdam and University of Twente (research partners); Amsterdam University Medical Centers, Amsterdam Museum, Museum Arnhem, Museum Jan Cunen, Leren van Kunst (public institutional partners); Vrije Universiteit Amsterdam, Radboud University, Story Lab-University Twente (knowledge experts); Living with Hope, SPKS, NFK(experience experts/patients advocacy).
