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.

"Small" things matter: residents' involvement in practice improvements in long-term care facilities.

PURPOSE OF THE STUDY: The process of involving older clients with regard to their care arrangements has been the subject of previous studies. However, a more general overview of the issues addressed by older people living in long-term care (LTC) facilities, in order to inform practice improvements, is missing. This article explores which aspects of care that older people in LTC facilities want to improve, by means of a collective policy agenda-setting project, during which the participants voice their own experiences and concerns regarding LTC. DESIGN AND METHODS: Seven LTC facilities for older people in the Netherlands joined a collective agenda-setting project in which a total of 58 residents participated. Qualitative methods were used: participant observations (80 h in total) and semi-structured interviews (n=16), which were analysed according to the principles of a qualitative content analysis. FINDINGS: There were many similarities between the seven organisations with regard to the proposed practice improvements. Nine topics were found to be important in improving the lives of older residents: a sense of community, feeling at home, social contacts between residents, independence, maintaining own hobbies and lifestyle, interpersonal conduct between residents and caregivers, being informed, security within the LTC facility, and food. IMPLICATIONS: Narratives about the daily lives and experiences of residents provided a rich understanding of what living in a LTC facility means, as well as the changes the residents wish to see. We found that according to the residents, the relatively 'small things' in life may have a big influence on improving the quality of life within LTC facilities.

Pioneering partnerships: Resident involvement from multiple perspectives.

Resident involvement in residential care homes is a challenge due to shortcomings of consumerist and formal approaches such as resident councils. The PARTNER approach aims to involve residents through collective action to improve their community life and wellbeing. The purpose of this article is to provide insights into the process of resident involvement by the PARTNER approach from the perspectives of multiple stakeholders, including residents, volunteers and staff members. A responsive evaluation was conducted, using participant observations, semi-structured interviews with residents, volunteers and professionals (n=16), and three focus groups. The findings show that critical elements in this process of resident involvement were the agenda-setting by residents, the formation of a cohesive resident group, the sharing of experiences and stories, the development of collective action, and the development of partnerships between residents and professionals and other stakeholder groups. Residents developed actions (gallery parties and a buddy project) to strengthen social interactions and realized these with the help of volunteers and professionals. We conclude that bringing residents together around a shared topic creates room for activism and leads to empowerment, feelings of social belonging and learning processes. We argue that it is a worthwhile enterprise to further develop structural partnership relations between residents, volunteers and staff in residential care homes.