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The COVID-19 pandemic emphasises the importance of care for our societies, yet underscores the inferiority of relational caring practices. During this time, we studied the participatory work of artists working with older adults using participant observations, in-depth interviews and visual ethnography. In this article, we present a case study of one arts initiative, a theatre company engaging seniors in the Netherlands, using ethics and aesthetics of care as sensitising concepts. The findings reveal that this work can promote relational forms of care. This study makes visible how different forms of care can be identified in a participatory art project.

Photovoice is a child-friendly method used in Participatory Health Research (PHR) to put children in a subject position to drive the research and social change. Little is known about the actual experiences of doing photovoice related to health issues in a primary school context regulated by adults. The purpose of this article is to explore how children's voices can be genuinely taken into account in research and social change, and what the potentials and tensions are when using photovoice in schools. We present a case example of a PHR with primary school children using photovoice, and will focus on the lessons learned. Participating children were eager to tell their photostories, proud of their achievements, and felt 'seen' by adults, expressed in the phrase 'Are we famous or something?' Playful activities and concrete instructions helped children to create their own narrative. For the development of the children's critical consciousness reflexive participatory actions and photo-elicitation were crucial. Their visuals prompted discussion and led to actions and plans taking into account their perspectives. Tensions included the struggle to find a right balance between guidance and control, protection and respect for autonomy and preset system requirements. Reflexivity and creativity are required to handle such tensions.

In the field of participatory health research (PHR) and related action research paradigms, limitations of standard ethical codes and institutional review processes have been identified. PHR is highly situational and relational, part of a hierarchical health care context and therefore ethics of care has been suggested as a helpful theoretical approach that emphasises responsibilities and relationships. The purpose of this article is to explore the value of Tronto's second-generation ethics of care for reflection on ethical challenges experienced by academic researchers. Using the design of a collaborative auto-ethnography, this article starts from a story of a researcher who deals with dilemmas in responsibility to care for co-researchers with lived experiences during a PHR study in the field of acute psychiatric care. By analysing the challenges together with all co-researchers, using a framework of ethics of care, we discovered the importance of self-care and existential safety for an ethical PHR practice. The reflexive meta-narrative shows that the ethics of care lens is useful to untangle moral dilemmas in all participatory research-related paradigms for all engaged.

The COVID-19 pandemic emphasises the importance of care for our societies, yet underscores the inferiority of relational caring practices. During this time, we studied the participatory work of artists working with older adults using participant observations, in-depth interviews and visual ethnography. In this article, we present a case study of one arts initiative, a theatre company engaging seniors in the Netherlands, using ethics and aesthetics of care as sensitising concepts. The findings reveal that this work can promote relational forms of care. This study makes visible how different forms of care can be identified in a participatory art project. [ABSTRACT FROM AUTHOR]

Background: Although people with intellectual disabilities (ID) are increasingly consulted in research, participation in research agenda setting processes is limited. This is not surprising as their voice can easily be dominated in consultations with researchers. The aim of this article is to explore the potentials of enclave deliberation as a first step towards broad consultation in research agenda setting. Method: The research agenda setting process followed a responsive methodology, which is characterised by a cyclical and emergent design. Two persons with ID and one parent participated in the research team. Seven persons with ID and six parents were interviewed individually. Subsequently, 10 focus groups were organised with people with ID and four focus groups with parents. Also, a questionnaire was sent to parents. Results: The process towards involvement of people with ID was characterised by several steps that guided enclave deliberation. First, stories of people were collected that reflected their intimate voice. Then, a political voice was further developed through dialogue and interaction in focus groups. This process resulted in a prioritised list of nine potential topics for research. Conclusion: The process of developing intimate voice and political voice can be regarded as a concretisation of enclave deliberation among disempowered groups. These steps are necessary to initiate a process towards establishing a broad consultation between different stakeholders about research on ID.

Evaluated the success of a palliative health care team in a Dutch health region. Results show that it is more appropriate to acknowledge ambiguity and facilitate its handling as part of dynamic learning processes. Discusses the usefulness of a responsive approach to evaluation, evaluation methodology, and learning experiences. (SLD)

Shows how evaluators can handle conflict and create, restore, and maintain conditions for an ongoing negotiation process using the example of a vocational rehabilitation project for psychiatric patients in which a conflict developed between management and therapists. (SLD)

Summary: Several studies have reported on the negative impact of interruptions and distractions on anaesthetic, surgical and team performance in the operating theatre. This study aimed to gain a deeper understanding of these events and why they remain part of everyday clinical practice. We used a mixed methods observational study design. We scored each distractor and interruption according to an established scheme during induction of anaesthesia and the surgical procedure for 58 general surgical cases requiring general anaesthesia. We made field notes of observations, small conversations and meetings. We observed 64 members of staff for 148 hours and recorded 4594 events, giving a mean (SD) event rate of 32.8 (16.3) h‐1. The most frequent events observed during induction of anaesthesia were door movements, which accounted for 869 (63%) events, giving a mean (SD) event rate of 28.1 (14.5) h‐1. These, however, had little impact. The most common events observed during surgery were case‐irrelevant verbal communication and smartphone usage, which accounted for 1020 (32%) events, giving a mean (SD) event rate of 9.0 (4.2) h‐1. These occurred mostly in periods of low work‐load in a sub‐team. Participants ranged from experiencing these events as severe disruption through to a welcome distraction that served to keep healthcare professionals active during low work‐load, as well as reinforcing the social connections between colleagues. Mostly, team members showed no awareness of the need for silence among other sub‐teams and did not vocalise the need for silence to others. Case‐irrelevant verbal communication and smartphone usage may serve a physical and psychological need. The extent to which healthcare professionals may feel disrupted depends on the situation and context. When a team member was disrupted, a resilient team response often lacked. Reducing disruptive social activity might be a powerful strategy to develop a habit of cross‐monitoring and mutual help across surgical and anaesthetic sub‐teams. Further research is needed on how to bridge cultural borders and develop resilient interprofessional behaviours. [ABSTRACT FROM AUTHOR]

Photovoice is a child-friendly method used in Participatory Health Research (PHR) to put children in a subject position to drive the research and social change. Little is known about the actual experiences of doing photovoice related to health issues in a primary school context regulated by adults. The purpose of this article is to explore how children's voices can be genuinely taken into account in research and social change, and what the potentials and tensions are when using photovoice in schools. We present a case example of a PHR with primary school children using photovoice, and will focus on the lessons learned. Participating children were eager to tell their photostories, proud of their achievements, and felt 'seen' by adults, expressed in the phrase 'Are we famous or something?' Playful activities and concrete instructions helped children to create their own narrative. For the development of the children's critical consciousness reflexive participatory actions and photo-elicitation were crucial. Their visuals prompted discussion and led to actions and plans taking into account their perspectives. Tensions included the struggle to find a right balance between guidance and control, protection and respect for autonomy and preset system requirements. Reflexivity and creativity are required to handle such tensions. [ABSTRACT FROM AUTHOR]

In the field of participatory health research (PHR) and related action research paradigms, limitations of standard ethical codes and institutional review processes have been identified. PHR is highly situational and relational, part of a hierarchical health care context and therefore ethics of care has been suggested as a helpful theoretical approach that emphasises responsibilities and relationships. The purpose of this article is to explore the value of Tronto's second-generation ethics of care for reflection on ethical challenges experienced by academic researchers. Using the design of a collaborative auto-ethnography, this article starts from a story of a researcher who deals with dilemmas in responsibility to care for co-researchers with lived experiences during a PHR study in the field of acute psychiatric care. By analysing the challenges together with all co-researchers, using a framework of ethics of care, we discovered the importance of self-care and existential safety for an ethical PHR practice. The reflexive meta-narrative shows that the ethics of care lens is useful to untangle moral dilemmas in all participatory research-related paradigms for all engaged. [ABSTRACT FROM AUTHOR]

Purpose The purpose of this paper is to explore the impact of chronic illness on a couple’s life experiences over a period of 40 years. It critically examines the assumptions of the public health discourse in the light of this couple’s attempts to balance love and health care within their relationship.Design/methodology/approach The couple, the first two authors, put themselves under the magnifying glass. They arranged for a dialogic encounter and built a co-constructed auto-ethnography. This study consists of a “raw” narrative and a reflection. This reflexive part was added by the third author, interpreting the couple’s experiences applying in a sociocultural way theories of ethical care. This sheds light on ethical care aspects encountered in the couple’s balancing of love and health care.Findings This study shows that the couple copes with adversity rather than being in control of it. Nonetheless their love relationship appears to be flourishing, thanks to their acknowledgement of the importance of mutual caring.Research limitations/implications The current public health discourse puts the couple’s private love relationship under pressure. It turns a blind eye towards the difficulties they experience with the contemporary “self-management” paradigm. The couple feels that the government is an interloper intruding into their private relationship. This creates tension, friction, anxiety, as well as increasing the burden of the illness and makes them feel insecure and unsafe.Originality/value The novel method used in this study offers a rare and deep insight. [ABSTRACT FROM AUTHOR]

Studies on older lesbian, gay, bisexual and transgender (LGBT) adults in residential care point to their discrimination, invisibility and the taboo on LGBT lifestyles, and call for development of 'gay-friendly' care. Yet, the literature is short on how to create inclusive residential care for older LGBT people. We aim to acquire in-depth understanding of experiences and needs of LGBT older people concerning their inclusion and participation in care settings to contribute to development of inclusive and responsive care that structurally enhances visibility, 'voice' and wellbeing of LGBT residents. Responsive, multi-stakeholder research using interviews, participant observations and focus groups was conducted within three elderly care homes in the Netherlands. Thematic, interpretative analysis was performed. LGBT respondents reported social exclusion and the need to feel safe and at home and be yourself. Exclusive activities for LGBT people foster personal and relational empowerment. However, heterogenous activities seem crucial in dealing with stereotypical imaging, heteronormativity and an equality-as-sameness discourse that influenced culture and daily practice in the homes and negatively affected the position of LGBT older adults. For development of gay-friendly elderly care exclusionary social norms need to be addressed. Dialogical sharing of narratives can help to empower LGBT older adults and stimulate understanding and shared responsibility between LGBT and heterosexual older people, as well as professionals. [ABSTRACT FROM AUTHOR]