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- Convenors:
-
Cristina Douglas
(University of Aberdeen)
Barbara Pieta (Max Planck Institute for Social Anthropology)
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- Format:
- Panel
- Sessions:
- Friday 21 January, -
Time zone: Europe/London
Short Abstract:
This panel explores challenges and possibilities arising from ethnographic and creative methods in research with cognitively impaired people with limited capacity to consent, before and throughout the Covid-19 crisis. What methodologies and modes of translation can make this research more inclusive?
Long Abstract:
Research with cognitively impaired participants (e.g., dementia, autism) covers a variety of disciplines and methodologies, from clinical research and social sciences to health and community care. Such research involves a multitude of participants, stakeholders, gatekeepers and ethics bodies. Due to participants' diminished verbal/cognitive capacities and often restricted physical mobility, finding creative ways of engagement is crucial. In practice, in some countries, research involving adults lacking capacity of consent is highly regulated by ethical bodies, which follow the 'golden standard' of clinical research. Sometimes this translates in favouring quantitative over qualitative methodologies, standardised methods and instruments over creative approaches, clinical and medical research over social sciences or arts. In the context of COVID-19 pandemic, the restrictions on conducting research with cognitively impaired people have become even more accentuated by limitations imposed on in-person methodologies, often the only ones that can involve participants with advanced cognitive impairment. Our panel invites contributions that address various aspects - theoretical, legal, ethical, practical - of research methodologies conducted with cognitively impaired people, before and during COVID-19 pandemic: what methodologies may promote more inclusive research for people with cognitive impairment; what challenges and limitations arise from the use of various methods; what solutions can we offer; how do we negotiate and translate methods we employ to satisfy ethical bodies, institutional risk assessment, including legal liability, without endangering disciplinary/ethical specificity or trivialising it; how do we explain/translate our research and methodologies to participants with limited cognitive abilities, especially when documentation has to follow a rigid legal language?
Accepted papers:
Session 1 Friday 21 January, 2022, -Paper short abstract:
Touch facilitates communication through mechanisms that can adapt to the circumstances of vulnerable people, including those who lack capacity. Massage ethnography is a novel means for suitably qualified researchers to address the epistemic injustices of conventional end-of-life research methods.
Paper long abstract:
Palliative care research raises important ethical and practical considerations, but preventing people with deteriorating cognitive capacity and physical resources from participating in research denies them the opportunity to inform practice with their knowledge. As a result, people with dementia are frequently excluded not only from palliative care research but from the palliative care for which they are eligible. Massage ethnography is a novel means for researchers who are suitably qualified in touch therapies to use massage sessions to observe and communicate in ways that do not impact on the dignity and resources of frail patients. Touch and the therapeutic relationship facilitates communication through mechanisms that can adapt to the diverse circumstances and environments of vulnerable people, including those with dementia and other neurodegenerative conditions. This study of eight people with life-limiting conditions, including six participants with Parkinson's Disease, considers the appropriateness of using massage ethnography as a research method for people whose physical and cognitive capacities are deteriorating. It considers the circumstances in which massage ethnography might meet the ethical and practical requirements necessary to address the epistemic injustices which arise when people with reduced capacity are excluded from research. Massage ethnography offers functional mechanisms counteracting some of the physical, psychosocial, emotional and spiritual issues faced by people with declining cognition. The study shows massage ethnography has the potential to transform the evidence base for palliative care development, while at the same time offering something to enhance the lives of those who participate.
Paper short abstract:
This paper presents an ethical and inclusive framework for including people with cognitive impairments in research, called Supported Decision-Making.
Paper long abstract:
Increasing participation of people with cognitive impairment is necessary for inclusive, ethical research that reduces persistent disparities in representation. However, many adults with cognitive impairment have guardians, who must consent to research involvement. Researchers have found that guardians are less likely to provide consent than the person with cognitive impairment, often resulting in lower participation. Institutional Review Board (IRB) members also have been found to hold very cautious views regarding research participation compared to the views of people with cognitive impairment or their guardians. This paper reviews issues that emerge because of differing views of research participation held by IRB members, guardians, and people with cognitive impairment that may unnecessarily limit the participation of people in research. The research literature on these barriers is summarized along with the authors’ own experiences with an alternative participatory strategy called Supported Decision-Making that has the potential to increase both self-determination and participation in research for people with cognitive impairment.
Paper short abstract:
This paper explores the barriers to, and promises of, the use of negotiated process consent to include older adults with varying cognitive capacities in ethnographic research in the care home setting during the COVID-19 pandemic.
Paper long abstract:
This ethnographic project examines care home residents' experiences of dignity and wellbeing during COVID-19. Viewing experiences of wellbeing as embedded within interpersonal negotiations, this research project highlights residents’ behaviours and stories as data to reveal complexities and contradictions in this taken-for-granted space. In order to include participants with varying cognitive capacities, this project uses negotiated process consent to include the voices of older adults in a residential care setting during COVID-19. First, in exploring the design of this project and its journey through University, UK, and EU ethics approval processes, this paper takes a critical view on gatekeepers, and the ethics of consent, in order to view the impacts that ‘bounded’ and protected care settings may have on the agency and rights of older adult research participants. In analysing the process of seeking ethical approval for this project during the pandemic, this paper offers timely insight on issues of gatekeeping, especially when working with adults with reduced mental capacity. Furthermore, the findings of this project consider the complex methodological issues of engaging adults with varying capacity to participate in research, de-centering the interview as a sole story-source, and engaging in creative and flexible ways to promote the engagement of diverse voices in qualitative care research.
Paper short abstract:
In this paper about persons with Alzheimer's disease, we argue that a combination of recordings of their words and participant observation resulting in ethnographic descriptions giving room for the "silence of the social" help us get closer to the experience of living with Alzheimer's disease.
Paper long abstract:
Ethnography has a long tradition of valorizing both participation and observation, and of creating descriptions that attempt to put into words the silent dimensions of the social, the taken for granted, the pre-lingual - and to give voice to the voiceless. However, ethnographic research also relies heavily on the spoken word. This might partially be due to the literary turn of the 1980s which amplified a discursive practice that gives priority to the spoken word. Secondly, in the strive for "evidence" (in particular in inter-disciplinary settings) the spoken word has a particularly "seductive power", creating the illusion of "raw data". Recordings of interviews and the use of quotations have thus become well-established methods in ethnographic research.
Doing research on persons with Alzheimer's is a reminder that we need methods that do not rely on verbal interactions. There is a need to revisit what ethnographic methods and descriptions can contribute with, when we study people, whose language is deteriorating. However, we are dealing with people whose language is exactly deteriorating - not people without any verbal language (like infants and objects). We are trying to understand people who attempt to keep alive a verbal interaction with us, who often try themselves to create a coherent verbal narrative, but fail. How can we understand what is at stake for them, and how might we as researchers become better at giving voice to the voiceless?