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

Groot, Barbara; Hendrikx, Annette; Bendien, Elena; Woelders, Susan; Kock, Lieke de; Abma, Tineke

doi:10.1016/j.jaging.2023.101154

Cited by 3 publications

(4 citation statements)

References 22 publications

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“…Research shows [ 35 , 36 ] that a person-centred approach is required, which means that collaboration in research must be based on respectful dialogues that facilitate each person’s participation and self-determination, with consideration of personal integrity. In a recently published study [ 37 ] it is highlighted that researchers ought to reflect on their role and position in academia, question existing frameworks and whose knowledge is ruled out, and how and at what stage of the research process this occurs. It also means that people need to be treated as equals who have valuable knowledge.…”

Section: Discussionmentioning

confidence: 99%

“…In a dialogue of this kind, the person concerned must be given the opportunity to express what is important to them. Researchers must open up the possibility of mutual reflection and the expression of the perceptions, feelings, and experiences that are needed to be able to discuss the value of dialogic reflections to share our stories about ethical issues [ 36 , 37 ].…”

Section: Discussionmentioning

confidence: 99%

“…This is also brought forward in a Swedish report [ 22 ] which shows that researchers in various fields can imagine some transparency and influence on their research from the public at the beginning and at the end of the research process, while these figures are markedly lower for the phases that concern the actual production of the research. However, Groot et al[ 37 ] highlight that academic researchers and professionals do not have a monopoly on knowledge and ground this in Fricker’s [ 31 ] view of justice, where being heard and believed is seen a basic human right. This should be seen from the perspective of academic freedom, which is seen as a prerequisite for the development of society.…”

Section: Discussionmentioning

confidence: 99%

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Research collaboration with older people as a matter of scientific quality and ethics: a focus group study with researchers in ageing and health

Dahlin-Ivanoff,

Berge,

Barenfeld

et al. 2024

Res Involv Engagem

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Background Society is placing increasing demands on collaboration with actors outside the academia to be involved in the research process, and the responsibility for turning this into reality lies with the researchers. As research collaboration is a way to increase the societal relevance of research and since older people have the right to be actively involved in research that concerns them, this study is addressed to researchers who work with and for older people. The purpose of this article is to explore researchers’ experiences of research collaboration with the heterogeneous group of older people, from healthy to frail. Methods The focus group method was applied based on a qualitative approach that is based on a social constructivist research tradition. It differs from other qualitative methods, such as interviews, in that it encourages interaction between research participants and contributes to shedding light on a collective understanding of the world. A total of 14 researchers participated in four focus groups (three to five participants/group). Results The results provided support for the overall theme: “Good scientific quality and ethics are balanced against the needs and abilities of older people”. This means a balance between the researcher and the older people collaborating with them to receive the best possible scientific quality. This is highlighted in the core category “Positioning for research collaboration” with the subcategories “Involvement or not”, “Traditional or innovative thinking” and “Selectivity or representativeness”, and the core category “Research collaboration – an ethical issue of power” with the subcategories “Research collaboration a risk for freedom of research”, “Research collaboration a risk of abuse of power” and “Discriminatory academic power structures create ethical issues”. Conclusions Addressing the balancing act of collaborating with older people in research, the findings contribute with an understanding of the importance of researchers’ awareness of social and academic structures to minimise the risk of epistemic injustices in research on ageing and health. We want to highlight the researchers’ voice and clarify the role that researchers have in terms of the opportunities for older people to become part of the collective understanding of ageing and health and make their voices heard.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Research collaboration with older people as a matter of scientific quality and ethics: a focus group study with researchers in ageing and health

Dahlin-Ivanoff,

Berge,

Barenfeld

et al. 2024

Res Involv Engagem

View full text Add to dashboard Cite

show abstract

“…The first, second and last authors wrote their perspective on the three case examples, then the third author added her perspective. From there, we reflected on that material in a written dialogical way, inspired by another parallel dialogical reflection (Groot et al , 2023), by sending the material to each other in circles. During this process, we also held telephone calls about the text and case, mostly involving two of us ( n = 7, mostly >30 min), informal gatherings ( n = 3, >60 min) and a meeting with all of us ( n = 1, 90 min).…”

Section: Methodsmentioning

confidence: 99%

Participatory action research and intersectionality: a critical dialogical reflection of a study with older adults

Muntinga,

Bendien,

Abma

et al. 2023

QAOA

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Purpose Researchers who work in partnership with older adults in participatory studies often experience various advantages, but also complex ethical questions or even encounter obstacles during the research process. This paper aims to provide insights into the value of an intersectional lens in participatory research to understand how power plays out within a mixed research team of academic and community co-researchers. Design/methodology/approach Four academic researchers reflected in a case-study approach in a dialogical way on two critical case examples with the most learning potential by written dialogical and via face-to-face meetings in duos or trios. This study used an intersectionality-informed analysis. Findings This study shows that the intersectional lens helped the authors to understand the interactions of key players in the study and their different social locations. Intersections of age, gender, ethnicity/class and professional status stood out as categories in conflict. In hindsight, forms of privilege and oppression became more apparent. The authors also understood that they reproduced traditional power dynamics within the group of co-researchers and between academic and community co-researchers that did not match their mission for horizontal relations. This study showed that academics, although they wanted to work toward social inclusion and equality, were bystanders and people who reproduced power relations at several crucial moments. This was disempowering for certain older individuals and social groups and marginalized their voices and interests. Originality/value Till now, not many scholars wrote in-depth about race- and age-related tensions in partnerships in participatory action research or related approaches, especially not about tensions in research with older people.

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The Promises of Inclusive Research Methodologies: Relational Design and Praxis

Verhage,

Lindenberg,

Bussemaker

et al. 2024

International Journal of Qualitative Methods

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This article explores the potential and challenges of inclusive research methodologies when working with older individuals with lower literacy levels. We present inclusive approaches developed during our research and discuss their implications for methodology and individual well-being among older adults with lower literacy levels. Our key insight is that the promise of inclusive research lies in relational design and praxis. Prioritizing meaningful relationships between researchers and participants, we emphasize the importance of considering participants as active contributors rather than mere informants. Creating a safe and supportive environment fosters trust, empowerment, and meaningful contributions from participants. Flexibility and adaptability in research approaches, including phased informed consent and the minimizing of written language, enhance participants’ self-confidence and trust in their own voices. This approach empowers participants in co-creating knowledge, which strengthens the trustworthiness and validity of research results. Inclusive research, while promising, requires researchers to navigate ethical dilemmas, invest time in building rapport, and adapt to participants’ needs. It challenges traditional research norms, emphasizing ethical engagement, meaningful participation, and tangible outcomes that benefit both researchers and participants. Employing inclusive research strategies, despite their departure from traditional praxis, ensures that the voices of older individuals with lower literacy levels are respected. This shift enhances the validity of knowledge, promotes co-creation, and fosters feelings of inclusiveness and empowerment. These promises underscore the importance of embracing inclusive research methodologies in contemporary research practices.

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

Cited by 3 publications

References 22 publications

Research collaboration with older people as a matter of scientific quality and ethics: a focus group study with researchers in ageing and health

Research collaboration with older people as a matter of scientific quality and ethics: a focus group study with researchers in ageing and health

Participatory action research and intersectionality: a critical dialogical reflection of a study with older adults

The Promises of Inclusive Research Methodologies: Relational Design and Praxis

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