Background and objective Public involvement in palliative care is challenging and difficult, because people in need of palliative care are often not capable of speaking up for themselves. Patient representatives advocate for their common interests. The aim of our study was to examine in depth the current practice of public involvement in palliative care. Setting and sample The study was conducted in the province of Limburg in the Netherlands, with six palliative care networks. Study participants were 16 patient representatives and 12 professionals. Method This study had a descriptive design using qualitative methods: 18 in-depth interviews and three focus groups were conducted. The critical incident technique was used. The data were analysed using an analytical framework based on Arnstein’s involvement classification and the process of decision making. Impact categories as well as facilitators and barriers were analysed using content analysis. Findings and conclusion The perceived impact of public involvement in palliative care in terms of citizen control and partnership is greatest with regard to quality of care, information development and dissemination, and in terms of policymaking with regard to the preparation and implementation phases of decision making. The main difference in perceived impact between patient representatives and professionals relates to the tension between operational and strategic involvement. Patient representatives experienced more impact regarding short-term solutions to practical problems, while professionals perceived great benefits in long-term, strategic processes. Improving public involvement in palliative care requires positive attitudes, open communication, sufficient resources and long-term support, to build a solid basis for pursuing meaningful involvement in the entire decision-making process.
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Background: Acquiring the theoretical and practical knowhow of conducting patient and public involvement (PPI) in research is not part of the traditional curriculum of researchers. Zuyd University of Applied Sciences and Huis voor de Zorg, a regional umbrella patient organization, therefore started a 1.5-year coaching programme. Objective: To establish a community of practice by developing a PPI coaching programme for senior and junior health services researchers of Zuyd University. The context consisted of research projects conducted by the participants. Methods: A participatory action research methodology. Data were collected from reports of thematic group meetings and individual sessions with participants, field notes and regular reflection meetings with the project team. Data were analysed by reflexive deliberation. Findings: The programme comprised a kick-off meeting (52 attendees), followed by 7 group meetings with 11 junior and 9 senior researchers. The project team constructed a serious game based on the concept of the participation ladder. Questions and concerns differed for junior and senior researchers, and separate tailored meetings were organized for both groups. Between group meetings, participants received individual assignments. Group meetings were accompanied by individual coaching sessions to provide tailor-made feedback. The programme concluded with a combined meeting with all stakeholders. Conclusion: Building a community of PPI practice through action research facilitates the development of a coaching programme that fosters social learning, empowerment and the development of a shared identity concerning PPI. The role and responsibilities of senior researchers should be distinguished from those of junior researchers.
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Background: Patient involvement in interprofessional education (IPE) is a new approach in fostering person-centeredness and collaborative competencies in undergraduate students. We developed the Patient As a Person (PAP-)module to facilitate students in learning from experts by experience (EBEs) living with chronic conditions, in an interprofessional setting. This study aimed to explore the experiences of undergraduate students, EBEs and facilitators with the PAP-module and formulate recommendations on the design and organization of patient involvement in IPE. Methods: We collected data from students, EBEs and facilitators, through eight semi-structured focus group interviews and two individual interviews (N = 51). The interviews took place at Maastricht University, Zuyd University of Applied Sciences and Regional Training Center Leeuwenborgh. Conventional content analysis revealed key themes. Results: Students reported that learning from EBEs in an interprofessional setting yielded a more comprehensive approach and made them empathize with EBEs. Facilitators found it challenging to address multiple demands from students from different backgrounds and diverse EBEs. EBEs were motivated to improve the personcentredness of health care and welcomed a renewed sense of purpose. Conclusions: This study yielded six recommendations: (a) students from various disciplines visit an EBE to foster a comprehensive approach, (b) groups of at least two students visit EBEs, (c) students may need aftercare for which facilitators should be receptive, (d) EBEs need clear instruction on their roles, (e) multiple EBEs in one session create diversity in perspectives and (f) training programmes and peer-to-peer sessions for facilitators help them to interact with diverse students and EBEs.
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Responsive public spaces use interactive technologies to adapt to users and situations. This enhances the quality of the space as a public realm. However, the application of responsive technologies in spatial design is still to be explored. What exactly are the options for incorporating responsive technologies in spatial designs to improve the quality of public spaces? The book Responsive Public Spaces explores and disentangles this new assignment for designers, and presents inspiring examples. A consortium of spatial designers, interaction designers and local stakeholders, headed by the Chair of Spatial Urban Transformation of Amsterdam University of Applied Sciences, carried out a two-year practice-based study of responsive public spaces. This book draws on those insights to provide a practical approach and a roadmap for the new design process for responsive public spaces.The study results are of signi¬icance for various professional fields. The book is intended for clients and stakeholders involved in planning and design of public spaces, spatial designers, interaction designers and students.
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Doelstellingen De mate van betrokkenheid van jonge gebruikers bij wervingsadvertenties voor geldezels op Instagram onderzoeken. Methoden Drie advertenties die de belangrijkste mechanismen voor betrokkenheid bij cybercriminaliteit weerspiegelen en gericht waren op Nederlandse gebruikersclusters werden op twee Instagram-plaatsingen geplaatst. Door middel van dit quasi-experimentele 3 × 2 factorial design konden we het bereik en de weergaven van de advertenties, de doorklikratio's, het geslacht van de deelnemers en de temporele verdelingen van de gebruikersbetrokkenheid analyseren. Resultaten De analyse toont aan dat tot 3% van de jonge gebruikers zich bezighield met de advertenties, vooral met advertenties die een luxe levensstijl promoten en neutralisatietechnieken gebruiken. Mannen waren vaker betrokken en 's nachts werd er meer geklikt. Conclusies Sommige jonge Instagram-gebruikers lijken geneigd om geld te verdienen via hun bankpas en lopen het risico om online betrokken te raken bij cybercriminaliteit. We moedigen toekomstig onderzoek aan om het gebruik van sociale media in criminologische studies verder te onderzoeken. ENGLISH Objectives Examine the level of engagement of young users with money mule recruitment ads on Instagram. Methods Three ads reflecting key cybercrime involvement mechanisms and targeting Dutch user clusters were run on two Instagram placements. By means of this quasi-experimental 3 × 2 factorial design, we were able to analyze the reach and views of the ads, click-through rates, gender of the participants, and temporal distributions of user engagement. Results Mimicking actual recruitment environments, analysis shows that up to 3% of young users engaged with the ads, especially those promoting a luxury lifestyle and using neutralization techniques. Men were more likely to engage, and click-through rates were higher at night. Conclusions Some young Instagram users seem prone to making money through their bank cards and risk becoming involved in cybercrime online. We encourage future research to explore further the use of social media in criminological studies. This is a post-peer-review, pre-copyedit version of an article published in Journal of Experimental Criminology. The final authenticated version is available online at: https://link.springer.com/article/10.1007/s11292-022-09537-7
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The vast literature on accountability in the public sector (usually called ‘public accountability’originating from political science and public administration tends to emphasize the positive dimension of holding authorities to account. As formulated by one prominent scholar in the field, ‘[a]ccountability has become an icon for good governance’: it is perceived as ‘a Good Thing, and, so it seems, we can’t have enough of it’ (Bovens, 2005: 182, 183). Accountability has, thus, become one of the central values of democratic rule – varying on a well-known American slogan one could phrase this as ‘no public responsi bility without accountability’.
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How to create personas to improve designs for behaviour change strategies in the public domain? Three recent cases illustrate lessons learnt and challenges encountered during persona development in the public domain. Personas were helpful to gain insight into diversity within a target group, to create empathy for its members, and to have a shared understanding when communicating about them. The main challenges encountered were 1) capturing complex behaviour with personas, as the behaviours involved were variable over time, the (legislative) environment in motion, and the target groups diverse; 2) finding the right balance between intuitive vs. evidence-based decision-making, a process we coined “taking a responsible leap of faith”; and 3) transferring personas to third parties, as free sharing of insights and tools is common in the public domain. Validation plays an important role in personas’ transferability. We call for all involved researchers to share experiences with using the persona methodology in the public domain, in order to tackle the challenges, and to create a more standardised way of developing personas.
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Launching smart city activities and projects requires political support. For sustainable approaches, a concrete strategy, and leadership endorsement from the municipal government is crucial. In accordance with the most prevalent definitions of a smart city, postulating that a city must enhance quality of life and provide benefits to the people living and working there, this book chapter focuses on one specific aspect of public value, the value it can bring to citizens. Through discussion of earlier theoretical approaches and empirical evidence, we provide a framework to better capture, analyze and model value creation in a given municipal ecosystem. By analyzing two different cases—Amsterdam and Winterthur—it becomes clear that “smartness” is not just a state to be achieved, but rather the enablement of processes that continuously and dynamically change the city, improving quality of life by providing different benefits and amenities. The key enablers to develop an ecosystem for a smarter city strategy involve Private-Public-Partnership models, the direct involvement of citizens, the availability of data infrastructures, and social interaction platforms.
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The growing prevalence of AI systems in society, has also prompted a growth of AI systems in the public sector. There are however ethical concerns over the impact of AI on society and how this technology can impact public values. Previous works do not connect public values and the development of AI. To address this, a method is required to ensure that developers and public servants can signal possible ethical implications of an AI system and are assisted in creating systems that adhere to public values. Using the Research pathway model and Value Sensitive Design, we will develop a toolbox to assist in these challenges and gain insight into how public values can be embedded throughout the development of AI systems.
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Civil society as a social sphere is constantly subjected to change. Using the Dutch context, this article addresses the question whether religiously inspired engagement is a binder or a breakpoint in modern societies. The author examines how religiously inspired people in the Netherlands involve themselves in non-governmental organizations (NGOs) and voluntary activities. Religious involvement and social engagement in different European countries are compared and discussed. In addition, the author explores the models of civil society and applies these to both the Christian and Islamic civil society in the Netherlands. Using four religious ‘identity organizations’ as case studies, this article discusses the interaction of Christian and Islamic civil society related to secularized Dutch society. The character and intentions of religiously inspired organizations and the relationship between religious and secular involvement are examined. This study also focuses on the attitude of policymakers towards religiously inspired engagement and government policy on ‘identity organizations’ in the Netherlands.
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