Moral learning through caring stories of nursing staff - OK.

BACKGROUND: Implementing person-centred care (PCC) in nursing homes is challenging due to a gap between theory and practice. Bridging this gap requires suitable education, which focuses on learning how to attune care to the values and preferences of residents and take moral, relational, and situational aspects into account. Staff's stories about the care they provide (i.e. caring stories) may deliver valuable insights for learning about these aspects. However, there is limited research on using staff's narratives for moral learning. OBJECTIVE: This study aims to provide insight into the perspectives of nursing staff on using their caring stories to learn about PCC. RESEARCH DESIGN: In this qualitative research, we conducted two rounds of interviews with 17 participants working in nursing homes. We wanted to obtain nursing staff's perceptions of working with their caring stories and the impact on PCC. ETHICAL CONSIDERATIONS: Participation was voluntary, and participants provided written consent. The study protocol is approved by The Institutional Review Board of the Medical Ethical Committee Leiden-Den Haag-Delft. FINDINGS: Working with caring stories enables nursing staff to provide PCC and improves job satisfaction. It increases awareness of what matters to residents, fosters information rich in context and meaning, and enhances voice and vocabulary. Through in-depth team reflections, nursing staff discussed the significant moments for residents, which centralizes the discussions on the moral quality of care. DISCUSSION: Working with caring stories fosters dialogue on PCC and enhances reflection on ethical situations in daily encounters, contributing to the moral development of nursing staff. Putting nursing staff's narratives at the centre of learning suits their daily practice and intrinsic motivation. Therefore, the outcomes of this study are an addition to the existing literature about using narratives in long-term care. CONCLUSION: Using nursing staff's narratives contributes to PCC and positively impacts nursing staff. We recommend using staff's caring stories as a vehicle for moral learning in the transition to PCC.

The complex nature of boundary work in arts and health: a reflective journey in a social design project.

BACKGROUND: There is an increased interest in the role artists can play in care for older people. This momentum comes with the need to closer investigate the nature of boundary work of creative professionals in arts and health projects. METHODS: We conducted a responsive evaluation to provide a thick description of the boundary work involved in ENCOUNTER#9, an intergenerational arts project taking place within an older person care setting. RESULTS: Boundary work proved to be rewarding, yet messy and unruly. Although the lead artist had carefully planned and prepared the project and gained a broad commitment, not everything went according to plan. This led to friction and all involved put effort into adjusting goals and expectations. CONCLUSION: We add to the conceptualisation of boundary work in arts and health by showing that it takes place on different levels: personal, relational, organisational and public.

In search of epistemic justice. Dialogical reflection of researchers on situated ethics in studies with people living with language and/or cognitive impairment.

BACKGROUND: Academics aim to understand the experiences of people living with cognitive and/or language impairment in their search for epistemic justice. Methods that do not rely solely on verbal information (e.g., interviews, focus groups) but also employ an attunement to the non-verbal - such as participant observation and creative methods, are seen as a suitable way to do justice to people's non-verbal interactions. However, in practice, researchers still experience ethical issues in everyday encounters with participants with cognitive and/or language impairment even when trying to address epistemic issues while employing such methods. This article aims to demonstrate 1) the importance of attending to the non-verbal in order to prevent epistemic injustice in research and 2) how a case-study approach and discussing ethical dilemmas with peers may help to unpack some of the ethical tensions that the researchers experience. AIM AND METHODS: This article focuses on ethical dilemmas the authors encountered during their research projects in the past. Three cases chosen by the authors illustrate these dilemmas. Dilemmas are presented as auto-ethnographical written accounts, which were discussed during ten retrospective dialogical sessions (60-90 min) organized by the research group consisting of six academic researchers. RESULTS: Ethically sound research, in which older people living with cognitive and/or language impairment are engaged, entails much more than following procedures about informed consent, privacy, submitting a proposal to an ethics committee, and using suitable methods and techniques. Ethical issues in these studies relate to everyday situations in which researchers tried to do justice to the knowledge of people who have difficulties expressing themselves verbally, but were challenged by what they have initially experienced as 'having it wrong,' 'not knowing,' and 'losing something in translation' in their practice. Finally, we learned that the interactions the researchers encountered were complex. They had to constantly evaluate the appropriateness of their approach, balance rational and intuitive forms of interaction and interpretation, and consider ways of communicating the research findings. DISCUSSION AND CONCLUSION: Approximating epistemic justice in research with people with cognitive and/or language impairment requires extra effort in daily research routines. Sharing everyday ethical issues via case stories and reflecting on these issues encourages moral learning and brings new knowledge about the craftsmanship of researchers. Especially the collaborative and dialogical reflection helped the researchers to dig deeper and find words for intangible processes that often remain unaddressed. However, sharing stories about ethical issues requires mutual trust and safety because sharing and reflecting may bring discomfort, messiness, and uncertainty.

Promoting activity and mobility in long-term care environments: A photo-elicitation study with older adults and nurses.

AIM(S): The aim of this research study is to collaboratively generate insights in the current institutional long-term care environment for activity and mobility of older adults, and of solutions that could be used to increase the activity and improve the mobility of the older adults. DESIGN: This research constitutes a qualitative study with a critical approach. METHODS: Data were collected using photo-elicitation in four long-term care units in Finland during the spring of 2022. Older adults participated in individual data collection sessions which combined photographing and discussion. Staff members individually took photographs and later participated in a group discussion based on the photographs. Reflexive thematic analysis was used to analyse all data together. RESULTS: Ten older adults and 12 staff members participated in the research study. Four themes were identified: (1) facilities should be designed and equipped for their users, (2) moving in the institutional environment, (3) passivity as a norm, and (4) nurses should act differently and have the resources to do so. CONCLUSION: To increase the activity and improve the mobility of older adults, improvements are needed in terms of the design of facilities, opportunities for freedom of movement, outdoor activity, daily life activities, exercise, nurses' role in activating older adults and resources. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Increased attention to the support of activity and mobility could benefit older adults in institutional long-term care. Physical activity promotion should be incorporated as an integral part of nursing practice. PATIENT OR PUBLIC CONTRIBUTION: Directors of units were consulted when planning the study. Older adults and nurses contributed to the data collection and interpretation of data. IMPACT: (ADDRESSING): What problem did the study address? ○Older adults have recurrently been reported as living inactive lives in institutional long-term care. ○There is evidence of the relationship between the environment and the activity and mobility of older adults, but there seems to be a research-practice gap in terms of implementing activity- and mobility-promoting environments. ○Older adults and staff members are important in developing practice and change-oriented knowledge that can be used to increase the activity and improve the mobility of older adults in institutional long-term care. What were the main findings? ○Various environmental improvements are recommended to increase the activity and improve the mobility of older adults in institutional long-term care settings. ○Improvements for the design of facilities, opportunities for freedom of movement, outdoor activity, daily life activities, exercise, nurses' role in activating older adults and resources for activity support would benefit older adults' activity and mobility. Where and on whom will the research have an impact? ○Increasing the activity of older adults requires better activity promotion and mobility support by nurses in institutional care. Sufficient education and resources should be organized for activity promotion, in addition to a care and organizational culture that values activity. ○Environmental aspects to promote activity and mobility need to be considered already at the planning, building and renovating phases of facilities. ○Policymakers and care organizers should consider evidence of the harms and benefits of different institutional living environments when making decisions on organizing care. REPORTING METHOD: The study is reported using the Consolidated Criteria for Reporting Qualitative Research (COREQ).

[The involvement of older adults in the residential care: dilemmas, pitfalls and potentials]. / Betrokken bewoners in het verpleeghuis: dilemma's, knelpunten en kansen.

In the residential care sector we have witnessed throughout the previous decades a development from a rather paternalistic approach towards a more democratic way of care giving. In many care organizations, however, residents are still rarely involved in the daily routine. In a participatory study on a somatic care unit in the Netherlands, we examined the challenges around the involvement of residents in the care residence. We organized two homogeneous group sessions, with staff and residents separately; reflected on new ways for involving residents; and concluded with a heterogeneous focus group, bringing staff and residents together. Both staff and residents recognized the importance of resident involvement in daily care. However, the difference in perspective on what this should look like created challenges. We found three dilemmas that made the engagement of residents challenging: autonomy versus dependence, personal experiences versus privacy, and happiness versus honesty. We found different ways staff and residents dealt with these dilemmas in practice and defined them in terms of bottlenecks and opportunities. Attention to these dilemmas, pitfalls, and potentials, promotes mutual understanding and ultimately resident involvement in daily care.

How participatory arts can contribute to Dutch older adults' wellbeing - revisiting a taxonomy of arts interventions for people with dementia.

BACKGROUND: A growing body of evidence suggests the positive impact of arts on health and wellbeing. The mechanisms underlying the impact however, remain overlooked. METHODS: 38 Semi-structured interviews were held with 30 older adults and 10 artists, involved in five participatory art projects in the Netherlands. Case-based framework and cross-over analyses were done on the basis of Cousins et al.'s taxonomy. RESULTS: Participatory art initiatives contributed to the wellbeing of older adults in a complex interplay with the artist, art form, group of participants, material aspects and continuity of activities. A welcoming environment appeared a consistent underlying mechanism for participants to grow on a personal and artistic level, connect with others and feel supported in their psychosocial wellbeing. CONCLUSION: This article demonstrates the important social function participatory art can have for older adults, and argues for the importance of a thorough consideration of the context wherein underlying mechanisms and outcomes emerge.

Older Adults' Engagement in Residential Care: Pitfalls, Potentials, and the Role of ICTs.

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.

Ethics framework for citizen science and public and patient participation in research.

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 science to act responsibly and offers a heuristic guide to reflect on ethics. Reflection on ethics is a pathway towards ethical citizen science, especially if researchers collaboratively reflect in partnership with non-academics who are subject to the moral issue.

What Patients Prioritize for Research to Improve Their Lives and How Their Priorities Get Dismissed again.

Health researchers increasingly work with patients in a participatory fashion. Active patient involvement throughout the research process can provide epistemic justice to patients who have often only had an informant role in traditional health research. This study aims to conduct participatory research on patient experiences to create a solid research agenda with patients and discuss it with relevant stakeholders. We followed a participatory research design in 18 sub-studies, including interviews and group sessions (n = 404 patients), and dialogue sessions (n = 367 professionals and directors in healthcare and social work, municipality civil servants, and funding agencies) on patient experiences with psychiatric care, community care, daycare, public health, and social work. Findings from the eight-year study show that four priorities stood out: attention for misuse of power and abuse; meaningful participation; non-human assistance, and peer support. Moreover, that: (1) patients, based on their experiences, prioritize different topics than experts; (2) most topics are trans-diagnostic and point to the value of a cross-disability approach; and (3) the priorities of patients are all too easily dismissed and require ethics work to prevent epistemic injustice. Long-term investment in a transdisciplinary community of practice offers a solid basis for addressing patient-centered topics and may impact the quality of life of people living with chronic illness, disability, or vulnerability.

Boundary Objects: Engaging and Bridging Needs of People in Participatory Research by Arts-Based Methods.

BACKGROUND: Participatory health research (PHR) is a research approach in which people, including hidden populations, share lived experiences about health inequities to improve their situation through collective action. Boundary objects are produced, using arts-based methods, to be heard by stakeholders. These can bring about dialogue, connection, and involvement in a mission for social justice. This study aims to gain insight into the value and ethical issues of boundary objects that address health inequalities. A qualitative evaluation is conducted on three different boundary objects, created in different participatory studies with marginalized populations (mothers in poverty, psychiatric patients, and unemployed people). A successful boundary object evokes emotions among those who created the objects and those encountering these objects. Such objects move people and create an impulse for change. The more provocative the object, the more people feel triggered to foster change. Boundary objects may cross personal boundaries and could provoke feelings of discomfort and ignorance. Therefore, it is necessary to pay attention to ethics work. Boundary objects that are made by people from hidden populations may spur actions and create influence by improving the understanding of the needs of hidden populations. A dialogue about these needs is an essential step towards social justice.

The Value of Active Arts Engagement on Health and Well-Being of Older Adults: A Nation-Wide Participatory Study.

An emerging body of research indicates that active arts engagement can enhance older adults' health and experienced well-being, but scientific evidence is still fragmented. There is a research gap in understanding arts engagement grounded in a multidimensional conceptualization of the value of health and well-being from older participants' perspectives. This Dutch nation-wide study aimed to explore the broader value of arts engagement on older people's perceived health and well-being in 18 participatory arts-based projects (dance, music, singing, theater, visual arts, video, and spoken word) for community-dwelling older adults and those living in long term care facilities. In this study, we followed a participatory design with narrative- and arts-based inquiry. We gathered micro-narratives from older people and their (in)formal caregivers (n = 470). The findings demonstrate that arts engagement, according to participants, resulted in (1) positive feelings, (2) personal and artistic growth, and (3) increased meaningful social interactions. This study concludes that art-based practices promote older people's experienced well-being and increase the quality of life of older people. This study emphasizes the intrinsic value of arts engagement and has implications for research and evaluation of arts engagement.

Adolescents' experiences with patient engagement in respiratory medicine.

OBJECTIVE: Adolescent engagement in decision-making processes in health care and research in the field of chronic respiratory diseases is rare but increasingly recognized as important. The aim of this study was to reflect on adolescents' motives and experiences in the process of establishing an advisory council for adolescents with a chronic respiratory disease. METHODS: A qualitative evaluation study was undertaken to assess the process of starting an advisory youth council in a tertiary hospital in the Netherlands. Data collection consisted of observations of council meetings, in-depth interviews with youth council members, and moderated group discussions. Data were analyzed using thematic analysis to explore the experiences of the council members (n = 9, aged 12-18 years, all with a chronic respiratory disease). Two-hour council meetings took place in the hospital to provide solicited and unsolicited advice to improve research and care. RESULTS: Three themes were identified as motives for adolescents to engage in an advisory council: (1) experience of fun and becoming empowered by their illness; (2) the value of peer support and contact; and (3) being able to contribute to care and research. The council's output consisted of solicited advice on information leaflets for patients, study procedures, and dietary menu options for hospitalized children. The council struggled to have their unsolicited advice heard within the hospital. CONCLUSIONS: Council members experienced engagement as beneficial at the individual, group, and organizational levels. However, meaningful youth engagement requires connectedness with, and official support from, officials at all levels within an organization.