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BACKGROUND: Citizen science and models for public participation in health research share normative ideals of participation, inclusion, and public and patient engagement. Academic researchers collaborate in research with members of the public involved in an issue, maximizing all involved assets, competencies, and knowledge. In citizen science new ethical issues arise, such as who decides, who participates, who is excluded, what it means to share power equally, or whose knowledge counts. This article aims to present an ethics framework that offers a lens of understanding and heuristic guidelines to deal with ethical issues in citizen science. METHODS: We conducted seven case studies between 2015 and 2021 to attune and validate the ethics framework for the context of citizen science. The cases related to studies with older adults, people with a psychiatric vulnerability, people dependent on community care, people who are unemployed or living in poverty or both, and young adults with respiratory disease. RESULTS: Ethics in citizen science reaches beyond the ethical issues in traditional biomedical and health research. It entails more than following procedures about informed consent and privacy and submitting a proposal to a Medical Research Ethics Committee. Ethics in citizen science relates to everyday ethical issues during the study, including relational and moral complexities concerning collaboration, sharing power, and democratic decision-making. Dealing with these issues requires ethics work of researchers. This entails seeing ethically salient issues and reflecting on everyday ethical issues. Ethics work consists of seven features: framing work, role work, emotion work, identity work, reason work, relationship work, and performance work. All are relevant for researchers in citizen science. CONCLUSIONS: Ethical issues in citizen science often relate to power differentials, partnership, and collaboration between academics and non-academics. The ethics framework prepares researchers for the work needed in citizen ...

Empowerment von Menschen, die unter prekären Bedingungen leben, ist eine zentrale Prämisse partizipativer Gesundheitsforschung (PGF). Empowerment, die Selbstermächtigung einer Person innerhalb ihrer sozialen Umgebung, hat eine persönliche, eine relationale und eine politische Komponente. Die hier berichtete Studie wurde mit Müttern durchgeführt, die unter prekären Bedingungen in den Niederlanden leben. Wir beschreiben in diesem Beitrag, wie Empowerment im Projekt gefördert werden konnte 1. im Rahmen der Agenda (Eigentumsrechte) und 2. durch die Anerkennung sowohl der Selbstartikulation als auch der geteilten Darstellung der Teilnehmerinnen über ihre eigenen Belange (epistemische Gerechtigkeit). Ein Ergebnis unsere Studie ist, dass insbesondere die Bemühung um relationales und politisches Empowerment sehr herausfordernd sein können: Relationale Spannungen in der Gruppe beeinträchtigten unsere Arbeit, und die Reflexion struktureller Ursachen für die missliche Lage der Mütter benötigte Zeit und relationale Sensitivität. Hier konzentrierten wir uns als Forschende insbesondere auf ethische Fragen und versuchten, mit kreativen Außenstehenden zusammenzuarbeiten, um der Disharmonie in der Gruppe entgegenzuwirken. Relationales und politisches Empowerment ist im Rahmen von PGF ein langfristiges Unterfangen und birgt einige Stolpersteine im Forschungsprozess. ; Empowerment of people in challenging circumstances is a central premise of participatory health research (PHR). Empowerment, a process of strengthening vis-à-vis one's social environment, has three components: personal, relational, and political. The current PHR study was conducted with mothers living in unfortunate situations in the Netherlands. In this article, we describe how PHR fostered personal empowerment to a certain degree by 1. setting an agenda for the project (ownership), and 2. listening to and acknowledging the articulation of the participants' own story and a collective story about their issues (epistemic justice). One result of the study is that ...

Empowerment of people in challenging circumstances is a central premise of participatory health research (PHR). Empowerment, a process of strengthening vis-à-vis one's social environment, has three components: personal, relational, and political. The current PHR study was conducted with mothers living in unfortunate situations in the Netherlands. In this article, we describe how PHR fostered personal empowerment to a certain degree by 1. setting an agenda for the project (ownership), and 2. listening to and acknowledging the articulation of the participants' own story and a collective story about their issues (epistemic justice). One result of the study is that achieving relational and political empowerment can be challenging. Relational tensions in the group distracted us. Conducting critical reflection on more structural causes of the unfortunate situations of the mothers is a process that needs time and calls for relational sensitivity and inclusion. The participatory researcher as facilitator focused on ethics and tried to collaborate with creative outsiders to change the disharmony in the group. Reaching relational and political empowerment is a long-term process in PHR, but not without stumbling blocks on the journey.

Empowerment of people in challenging circumstances is a central premise of participatory health research (PHR). Empowerment, a process of strengthening vis-à-vis one's social environment, has three components: personal, relational, and political. The current PHR study was conducted with mothers living in unfortunate situations in the Netherlands. In this article, we describe how PHR fostered personal empowerment to a certain degree by 1. setting an agenda for the project (ownership), and 2. listening to and acknowledging the articulation of the participants' own story and a collective story about their issues (epistemic justice). One result of the study is that achieving relational and political empowerment can be challenging. Relational tensions in the group distracted us. Conducting critical reflection on more structural causes of the unfortunate situations of the mothers is a process that needs time and calls for relational sensitivity and inclusion. The participatory researcher as facilitator focused on ethics and tried to collaborate with creative outsiders to change the disharmony in the group. Reaching relational and political empowerment is a long-term process in PHR, but not without stumbling blocks on the journey.

Participatory health research (PHR) and the use of arts-based methods continues to grow in popularity. Many scholars acknowledge the importance of (visual) ethics, especially in the dissemination of photographs in a digital age, but ethical issues that arise in relation to contact with the press and social media are not well documented. This article presents second-person action research of a critical case of photovoice in which ethical issues arose when a newspaper report reinforced stigma and was widely disseminated via social media. Press and social media can rapidly engage people for social change, but this also presents risks. What is the potential to de-stigmatize in such situations? The context of the case in this article is the participatory KLIK project, a Dutch initiative which aims to improve the health and resilience of school children aged 8–11 years in a deprived neighbourhood. Awareness of the possibility of political listening and viewing is fundamental for an ethical practice. This article shows the importance of co-ownership, media literacy and collaborative learning about ethics in PHR.

Qualitative researchers are more and more keen to have social impact and make their research actionable. Participatory health research (PHR) involves people who live in vulnerable situations and fosters collaboration with other stakeholders, including policymakers, to improve the health and well-being of those whose lives are at stake. People who it concerns are engaged in every step of the research process of PHR to make a difference and strive for social change. Qualitative and elicitation methods are often the primary source of data gathering in PHR, and an arts-based approach is a powerful way to engage a salient audience, such as policymakers. This article provides a thick description of a PHR study aiming to create a learning platform for change in service delivery for unemployed people in order to better meet their needs.

Over the previous years, the residential care sector has gone through a transition from a rather paternalistic approach towards a more democratic way of caregiving. Nevertheless, many care organizations still find it challenging to engage their residents in the process of care. In this study, we investigated the challenges regarding the engagement of older adults in residential care. As recent studies indicated the increasing opportunities of ICTs, we paid particular attention to this in the process of engagement. We followed a participatory action research approach among caregivers and older adults at a somatic care department in a care residence in the Netherlands. Methods used included 15 participants in two homogeneous group sessions, reflections on action in practice, and one mixed focus group. Our findings show that both caregivers and older adults acknowledge the importance of engagement in daily care. However, their different perspectives on how this should take place, made the actual engagement of older adults a challenge. We determined three dilemmas complicating this engagement in care, and labeled these (1) autonomy versus dependence; (2) personal experiences versus privacy; and (3) happiness versus honesty. We found different ways of how caregivers and older adults deal with these dilemma's in practice and defined these in terms of pitfalls and potentials. ICTs were shown to reinforce both the pitfalls and potentials. Paying attention to these challenges in residential care, including how caregivers and older adults deal with these challenges, will encourage a mutual understanding and actual engagement in decisions on daily care. Further research is recommended on the role of organizations' management, older adults' relatives, or older adults with cognitive impairments.