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.

Toward Age-Friendly Policies: Using the Framework of Age-Friendliness to Evaluate the COVID-19 Measures from the Perspectives of Older People in the Netherlands.

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 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.

A Dutch Study of Remarkable Recoveries After Prayer: How to Deal with Uncertainties of Explanation.

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 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.

Can you be cured if the doctor disagrees? A case study of 27 prayer healing reports evaluated by a medical assessment team in the Netherlands.

THE SETTING: between 2015 and 2020 a medical assessment team evaluated 27 reports of prayer healing in the Netherlands. OBJECTIVES: Three 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? METHODS: The 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. RESULTS: Eleven 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. CONCLUSIONS: Our 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.

Menopause and work: A narrative literature review about menopause, work and health.

BACKGROUND: Menopause is part of working women's lives. In Western countries, labour market patterns are changing rapidly: women's labour participation has increased, the percentage of full-time working women is rising, and retirement age is increasing. OBJECTIVE: This narrative literature study aims to provide an insight in the state of the art in the literature about the relationship between menopause, work and health and to identify knowledge gaps as input for further research. METHODS: The search was conducted in PubMed, CINAHL, MEDLINE and ScienceDirect. The final set includes 36 academic articles, 27 additional articles related to the topic and 6 additional sources. RESULTS: Research on menopause, work and health is scarce. Results are grouped thematically as follows: Menopause and (1) a lack of recognising; (2) sickness absence and costs; (3) work ability; (4) job characteristics; (5) psychosocial and cultural factors; (6) health; (7) mental health, and (8) coping and interventions. Work ability of women with severe menopausal complaints may be negatively affected. CONCLUSIONS: Due to taboo, menopause remains unrecognised and unaddressed within an organisational context. New theoretical and methodological approaches towards research on menopause, work and health are required in order to match the variety of the work contexts world-wide.

Three cases of hearing impairment with surprising subjective improvements after prayer. What can we say when analyzing them?

AIM: to enhance the understanding of documented mismatches between 'subjective' experiences and 'objective' data in three cases of self-reported instantaneous healing of hearing impairment upon prayer. METHOD: description of three cases taken out of a larger retrospective case-based study of prayer healing in the Netherlands. In this larger study multiple reported healings were investigated using both medical files and patients' narratives through in-depth interviews. A subset of three cases with dramatic subjective reduction of hearing impairment upon prayer was studied. These patients underwent extensive additional investigations at the audiology center of the Amsterdam University Medical Centre. All data was evaluated by an interdisciplinary medical assessment team, subsequent analysis was transdisciplinary. RESULTS: the three case histories with self-reported healing after prayer demonstrated a clear mismatch between subjective experiences and objective findings. No measurable improvements were found in four different audiological testing methods. However, in-depth interviews, hetero-anamnesis and a validated questionnaire all confirmed the healings. The medical assessment team could not label these healings as 'medically remarkable' because of absence of measurable 'objective' changes, but they did consider them as 'remarkable in a broader sense'. On expert consultation no equivalents of mismatches to this extent could be found. The healing experiences of our participants involved their entire being with profound positive effects in different domains of their lives, and a perception of a benevolent God who acted upon them. There was a distinctive pattern, labelled by the participants as a healing of mind, soul and body. CONCLUSIONS: The subjective-objective incongruities that were found were not well understood. We noticed a paradox: the 'objective' measurements did not reflect hearing abilities in daily life where-as 'subjective experiential' data did. The latter could be 'objectified' and validated in various ways. In fact, a rigid distinction between 'objective' and 'subjective' was not relevant here, nor a hierarchy among them. A model leaving room for different causations (horizontal epistemology) complied best with the multi dimensionality we came across.

"My Body Does Not Fit in Your Medical Textbooks": A Physically Turbulent Life With an Unexpected Recovery From Advanced Parkinson Disease After Prayer.

AIM: The purpose of this article is to enhance our understanding of prayer healing by studying a case which was described as a 'remarkable healing' by a medical assessment team at the Amsterdam University Medical Centre (UMC) in the Netherlands. METHOD: This retrospective, case-based study of prayer healing investigated numerous reported healings using both medical files and patient narratives. A medical assessment team evaluated the associated medical files, as well as any experiential data. The instances of healing could be classified as 'remarkable' or 'unexplained.' Experiential data were obtained by qualitative, in-depth interviews. The study was transdisciplinary in nature, involving medical, psychological, theological, and philosophical perspectives. The object was to understand such healings within the broader framework of the science-religion debate. RESULTS: We present the case of a female patient, born in 1959, with Parkinson disease who experienced instantaneous, nearly complete healing in 2012 after intercessory prayer. At that point the disease was at an advanced stage, rapidly progressive, with major debilitating symptoms. High doses of oral medication were required. Following this healing there was no recurrence of her former symptoms, while the remaining symptoms continued to improve. She regained all of her capacities at work, as well as in daily life. The medical assessment team described her recovery as 'remarkable.' The patient reported that she had always 'lived with God,' and that at a point when she had given up hope, 'life was given back to her.' This recovery did not make her immune to other illnesses and suffering, but it did strengthen her belief that God cares about human beings. CONCLUSION: This remarkable healing and its context astonished the patient, her family, and her doctors. The clinical course was extraordinary, contradicting data from imaging studies, as well as the common understanding of this disease. This case also raised questions about medical assumptions. Any attempt to investigate such healings requires the involvement of other disciplines. A transdisciplinary approach that includes experiential knowledge would be helpful. Against the background of the science-religion debate, we feel that the most helpful approach would be one of complementarity and dialogue, rather than stoking controversy.

Teaching Through Remembering: Using Written Reminiscences in Courses for Older Adults.

This article presents the use of reminiscence work in educational courses for older adults. The author analyzes a course that addresses experiences of time and the process of remembering at a later age. The study demonstrates how reminiscences, written by participants of the course, are used as illustrative material for some of the theoretical points. They are also instrumental in unfolding an answer to one of the key questions of the course, which is, what is the meaning of remembering in later life? The author argues that an educative use of personal reminiscences can improve the insight of the participants in theoretical issues at hand and can help them to develop new social skills, thus enabling them to translate experiences of aging into a sense-making process in later life. In addition, an educational application of reminiscence work broadens the possibilities for the participants to strengthen their feeling of belonging and to reach beyond one dominant version of history.