Background: A patient decision aid (PtDA) can support shared decision making (SDM) in preference-sensitive care, with more than one clinically applicable treatment option. The development of a PtDA is a complex process, involving several steps, such as designing, developing and testing the draft with all the stakeholders, known as alpha testing. This is followed by testing in ‘real life’ situations, known as beta testing, and then finalising the definite version. Our aim was developing and alpha testing a PtDA for primary treatment of early stage breast cancer, ensuring that the tool is considered relevant, valid and feasible by patients and professionals. Methods: Our qualitative descriptive study applied various methods including face-to-face think-aloud interviews, a focus group and semi-structured telephone interviews. The study population consisted of breast cancer patients facing the choice between breast-conserving therapy with or without preceding neo-adjuvant chemotherapy and mastectomy, and professionals involved in breast cancer care in dedicated multidisciplinary breast cancer teams. Results: A PtDA was developed in four iterative test rounds, taking nearly 2 years, involving 26 patients and 26 professionals. While the research group initially opted for simplicity for the sake of implementation, the clinicians objected that the complexity of the decision could not be ignored. Other topics of concern were the conflicting views of professionals and patients regarding side effects, the amount of information and how to present it. Conclusion: The development was an extensive process, because the professionals rejected the simplifications proposed by the research group. This resulted in the development of a completely new draft PtDA, which took double the expected time and resources. The final version of the PtDA appeared to be well-appreciated by professionals and patients, although its acceptability will only be proven in actual practice (beta testing)
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Although there exist various product and services to support people with dementia in their everyday activities and challenges, people with dementia and their informal caregivers experience many unmet needs. In this paper, we present the ongoing development process of a decision aid that aims to reveal these unmet needs and match them with relevant support and care solutions. This entails investigating the needs of people with dementia and caregivers, making an inventory of the product and service solutions, co-creating the question articulation to be used in the decision aid and developing and testing three design concepts. We aim that the insights we gained from the tests will inspire interaction designers and researchers that investigate person-centered dementia care.
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OBJECTIVE: Patients diagnosed with advanced larynx cancer face a decisional process in which they can choose between radiotherapy, chemoradiotherapy, or a total laryngectomy with adjuvant radiotherapy. Clinicians do not always agree on the best clinical treatment, making the decisional process for patients a complex problem.METHODS: Guided by the International Patient Decision Aid (PDA) Standards, we followed three developmental phases for which we held semi-structured in-depth interviews with patients and physicians, thinking-out-loud sessions, and a study-specific questionnaire. Audio-recorded interviews were verbatim transcribed, thematically coded, and analyzed. Phase 1 consisted of an evaluation of the decisional needs and the regular counseling process; phase 2 tested the comprehensibility and usability of the PDA; and phase 3 beta tested the feasibility of the PDA.RESULTS: Patients and doctors agreed on the need for development of a PDA. Major revisions were conducted after phase 1 to improve the readability and replace the majority of text with video animations. Patients and physicians considered the PDA to be a major improvement to the current counseling process.CONCLUSION: This study describes the development of a comprehensible and easy-to-use online patient decision aid for advanced larynx cancer, which was found satisfactory by patients and physicians (available on www.treatmentchoice.info). The outcome of the interviews underscores the need for better patient counseling. The feasibility and satisfaction among newly diagnosed patients as well as doctors will need to be proven. To this end, we started a multicenter trial evaluating the PDA in clinical practice (ClinicalTrials.gov Identifier: NCT03292341).LEVEL OF EVIDENCE: NA Laryngoscope, 129:2733-2739, 2019.
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Objective: Effective healthcare innovations are often not adopted and implemented. An implementation strategy based on facilitators and barriers for use as perceived by healthcare professionals could increase adoption rates. This study therefore aimed to identify the most relevant facilitators and barriers for use of an innovative breast cancer aftercare decision aid (PtDA) in healthcare practice. Methods: Facilitators and barriers (related to the PtDA, adopter and healthcare organisation) were assessed among breast cancer aftercare health professionals (n = 81), using the MIDI questionnaire. For each category, a backward regression analysis was performed (dependent = intention to adopt). All significant factors were then added to a final regression analysis to identify to most relevant determinants of PtDA adoption. Results: Expecting higher compatibility with daily practice and clinical guidelines, more positive outcomes of use, higher perceived relevance for the patient and increased self-efficacy were significantly associated with a higher intention to adopt. Self-efficacy and perceived patient relevance remained significant in the final model. Conclusions: Low perceived self-efficacy and patient relevance are the most important barriers for health professions to adopt a breast cancer aftercare PtDA. Practice implications: To target self-efficacy and perceived patient relevance, the implementation strategy could apply health professional peer champions.
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Background: Patient decision aids (PDAs) can support the treatment decision making process and empower patients to take a proactive role in their treatment pathway while using a shared decision-making (SDM) approach making participatory medicine possible. The aim of this study was to develop a PDA for prostate cancer that is accurate and user-friendly. Methods: We followed a user-centered design process consisting of five rounds of semi-structured interviews and usability surveys with topics such as informational/decisional needs of users and requirements for PDAs. Our userbase consisted of 8 urologists, 4 radiation oncologists, 2 oncology nurses, 8 general practitioners, 19 former prostate cancer patients, 4 usability experts and 11 healthy volunteers. Results: Informational needs for patients centered on three key factors: treatment experience, post-treatment quality of life, and the impact of side effects. Patients and clinicians valued a PDA that presents balanced information on these factors through simple understandable language and visual aids. Usability questionnaires revealed that patients were more satisfied overall with the PDA than clinicians; however, both groups had concerns that the PDA might lengthen consultation times (42 and 41%, respectively). The PDA is accessible on http://beslissamen.nl/. Conclusions: User-centered design provided valuable insights into PDA requirements but challenges in integrating diverse perspectives as clinicians focus on clinical outcomes while patients also consider quality of life. Nevertheless, it is crucial to involve a broad base of clinical users in order to better understand the decision-making process and to develop a PDA that is accurate, usable, and acceptable.
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Individuals in multiproblem situations frequently seek frontline legal support. The support by frontline legal professionals is limited by its focus on the legal issue instead of the underlying problems. A strong focus on client values – i.e. on the outcome that these services yield in the client’s perception – may lead to a more effective approach by targeting underlying problems. Through individual interviews with clients and professionals, the current study examines client values and services that may contribute to those client values. Besides functional client values that focus on resolving the problem situation, emotional client values, such as trust prove at least as important. Furthermore, client values are not only supported by the professional’s legal expertise, accessibility and ability to build a relationship, but also by the professional’s knowledge and skills relevant to multiproblem situations, such as his ability to empower the client, the willingness to work on concrete needs, and his ability to adopt an integrated approach. Research findings confirm the relevance of an integrated approach to multiproblem situations, with due attention to different client values. Similarly, it proves important to incorporate skills and knowledge that specifically address multiproblem situations in education and training programmes of frontline legal professionals. Nederlandse samenvatting: Mensen in multiprobleem situaties maken veelvuldig gebruik van eerstelijns rechtshulp. De ondersteuning door eerstelijns rechtshulp wordt beperkt door de focus op de voorliggende rechtsvraag, in plaats van de onderliggende problematiek. Een sterke focus op klantwaarden – de opbrengsten van de dienstverlening in de ogen van de cliënt – zou weleens tot een effectievere werkwijze kunnen leiden, omdat de achterliggende problemen worden aangepakt. Aan de hand van diepteinterviews onder cliënten en professionals is onderzocht welke klantwaarden voor deze doelgroep relevant zijn en welke dienstverleningsaspecten daaraan kunnen bijdragen. Naast functionele klantwaarden gericht op oplossingen voor de probleemsituatie, blijken emotionele klantwaarden als vertrouwen en ontzorging minstens zo relevant. Ook dragen niet alleen juridisch vakmanschap, bereikbaarheid en de vaardigheden om met de klant een relatie op te bouwen van de professional aan klantwaarden bij, maar ook specifieke kennis en vaardigheden gericht op multiproblematiek, zoals de vaardigheid om de klant te empoweren, de bereidheid om te werken aan concrete behoeften, en het werken met een geïntegreerde aanpak. De onderzoeksbevindingen onderstrepen de relevantie van een integrale aanpak bij multiproblematiek met aandacht voor diverse klantwaarden. Evenzo blijkt van belang dat vaardigheden en kennis die specifiek gericht zijn op multiproblematiek in de opleiding van eerstelijns rechtshulp professionals worden geïncorporeerd.
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The objective of this study is to illuminate the effects of intensive aid on the self-reliance and independence of single mothers, and to show what is and what can be done to improve the empowerment of this group. Firstly the paper focuses on the effects of intensive social aid on the self-reliance and independence of single mothers, and how this affects the process of regaining social inclusion in each of the home countries. Secondly the results are compared with the second country, in respect of the socio-economic and cultural circumstances. This study is based upon a comparative data collected from randomly selected single mothers in each country. In the Netherlands information was collected during in-depth interviews; in Cyprus semi-structured interviews and questionnaires were used. The aim is to shed light on the issues that impact on the lives and the well-being of these mothers and their children in their social context. This chapter presents sections of two large research projects which attempted to investigate the single-mother families from the woman’s perspective, and it aims to analyse the following: • Factors that hinder and improve the independent life of a single mother • Choices that women make during the offered aid period and their motives • The results of this change.
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It seems easier to talk about the end of humanity than about giving up the internet or giving up driving. It is argued that in our developed "first" world, we now need development aid ourselves. We are “blind” at the mercy of technological “progress”, which we continue to see against our better judgement, as the way to a heaven on earth! We are working 24 7 in every conceivable direction to bring new technologies to the market, preferably digitally, because then they can be further developed directly with data and at the expense of users, the entire world population. We need development aid. The few peoples who still live completely ecologically sustainable lives must gradually become our teachers, so that BigTech companies no longer determine our future. After a few months of quarantine, world leaders such as Elon Musk and Biden would learn from, for example, real Aborigines to turn the tide, stop using all superfluous technology and work in harmony with nature. To feel our connection to life rather than technology. Personal responsibility for ecology instead of possessed by possession.
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This is a tool that you can use when designing and delivering (online) active learning. The tool will help you find answers to questions such as: − Which learning activities can I offer students in order to achieve a specific learning objective? − Is there an optimum order for learning activities? − How do I ensure that students become actively involved in their own learning process?
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Context:Rapid developments and adoption of machine learning-based software solutions have enabled novel ways to tackle our societal problems. The ongoing digital transformation has led to the incorporation of these software solutions in just about every application domain. Software architecture for machine learning applications used during sustainable digital transformation can potentially aid the evolution of the underlying software system adding to its sustainability over time.Objective:Software architecture for machine learning applications in general is an open research area. When applying it to sustainable digital transformation it is not clear which of its considerations actually apply in this context. We therefore aim to understand how the topics of sustainable digital transformation, software architecture, and machine learning interact with each other.Methods:We perform a systematic mapping study to explore the scientific literature on the intersection of sustainable digital transformation, machine learning and software architecture.Results:We have found that the intersection of interest is small despite the amount of works on its individual aspects, and not all dimensions of sustainability are represented equally. We also found that application domains are diverse and include many important sectors and industry groups. At the same time, the perceived level of maturity of machine learning adoption by existing works seems to be quite low.Conclusion:Our findings show an opportunity for further software architecture research to aid sustainable digital transformation, especially by building on the emerging practice of machine learning operations.
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