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... Show morePurpose – 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 coresearchers 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. Show less
Groot, B.; Hendrikx, A.; Bendien, E.; Woelders, S.; Kock, L. de; Abma, T. 2023
BackgroundAcademics 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... Show moreBackgroundAcademics 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 methodsThis 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.ResultsEthically 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 conclusionApproximating 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. Show less
Kruijthoff, D.J.; Bendien, E.; Kooi, C. van der; Glas, G.; Abma, T.A. 2023
The settingbetween 2015 and 2020 a medical assessment team evaluated 27 reports of prayer healing in the Netherlands.ObjectivesThree research questions were formulated. What are the medical and... Show moreThe settingbetween 2015 and 2020 a medical assessment team evaluated 27 reports of prayer healing in the Netherlands.ObjectivesThree research questions were formulated. What are the medical and experiential findings? Are there medically remarkable and/or unexplained healings? Which explanatory frameworks can help us understand the findings?MethodsThe reported healings were analyzed using both medical files and patient narratives, as part of a case study research design compiled by a multidisciplinary research team. An independent team of five medical consultants, representing different fields of expertise, evaluated the 27 case files. According to criteria these were selected from a larger group of 83 received reports. Experiential data was obtained by in-depth interviews and analyzed. Instances of healing could be classified as ‘medically remarkable’ or ‘medically unexplained’. Subsequent analysis was transdisciplinary.ResultsEleven of the 27 healings assessed were evaluated as ‘medically remarkable’, none were labelled as ‘medically unexplained’. Recurring characteristics were common to some degree in all healings, whether ‘medically remarkable’ or not: a temporal connection with prayer, instantaneity and unexpectedness of healing, strong emotional and physical manifestations, and a sense of ‘being overwhelmed’ and transformed. The healings were invariably interpreted as acts of God. Positive effects have persisted for 5 to 33 years, with 2 relapses.ConclusionsOur findings on remarkable healings do not fit well in the traditional biomedical conceptual framework. All healings exhibited important non-medical aspects, whether or not they were assessed as medically remarkable. We need a broader multi-perspective approach in which all relevant data is considered to be valuable, both experiential and objective. This so-called horizontal epistemology may be helpful when trying to understand the findings, and it may bring about mutual understanding between patients, health practitioners and relevant disciplines. Show less
Bendien, E.; Verhage, M.; Lindenberg, J.; Abma, T. 2023
Protective measures that were taken during the COVID-19 pandemic, targeted older people as an at-risk group. The objective of this article is to investigate how older people in the Netherlands... Show moreProtective measures that were taken during the COVID-19 pandemic, targeted older people as an at-risk group. The objective of this article is to investigate how older people in the Netherlands experienced the mitigation measures and whether these measures endorse and promote the idea of an age-friendly world. The WHO conceptual framework of age-friendliness, which consists of eight areas, has been used for a framework analysis of 74 semi-structured interviews with older Dutch adults, that were held during the first and the second wave of the pandemic. The results of the analysis indicate that the areas of social participation, respect and inclusion were affected most, and the measures concerning communication and the health services were experienced as age-unfriendly. The WHO framework is a promising tool for assessment of social policies, and we suggest its further development for this purpose. Show less
Bendien, E.; Kruijthoff, D.J.; Kooi, C. van der; Glas, G.; Abma, T. 2023
This article addresses cases of remarkable recoveries related to healing after prayer. We sought to investigate how people who experienced remarkable recoveries re-construct and give meaning to... Show moreThis article addresses cases of remarkable recoveries related to healing after prayer. We sought to investigate how people who experienced remarkable recoveries re-construct and give meaning to these experiences, and examine the role that epistemic frameworks available to them, play in this process. Basing ourselves on horizontal epistemology and using grounded theory, we conducted this qualitative empirical research in the Netherlands in 2016–2021. It draws on 14 in-depth interviews. These 14 cases were selected from a group of 27 cases, which were evaluated by a medical assessment team at the Amsterdam University Medical Centre. Each of the participants had experienced a remarkable recovery during or after prayer. The analysis of the interviews, which is based on the grounded theory approach, resulted in three overarching themes, placing possible explanations of the recoveries within (1) the medical discourse, (2) biographical discourse, and (3) a discourse of spiritual and religious transformation. Juxtaposition of these explanatory frameworks provides a way to understand better the transformative experience that underlies remarkable recoveries. Uncertainty regarding an explanation is a component of knowing and can facilitate a dialogue between various domains of knowledge. Show less
