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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:
A practical exploration of past, current and future possibilities of embodied creativity in research with people living with advanced dementia. We will examine to what extent this can be a collaborative process, creative approaches that might achieve this, and discuss potential ethical concerns.
Paper long abstract:
People living with advanced dementia can be excluded from opportunities and treated as ‘the other’ when society continues to overvalue cognitive skills, language ability and verbal communication. Here, we will consider our own real-world research, which identifies the person through an embodied, inter-embodied or post-humanist perspective. People living with advanced dementia are at risk of exclusion from studies because of inadequate research methodologies and methods, and/or complex ethical processes.
Learning from our previous research where traditional methods initially predominated, we will examine a move towards creative methods to achieve potential collaboration with people living with advanced dementia. We will question how collaboration can be achieved with this group, how we know we are collaborating, and if/how creative methods extend collaboration. In addition, ethical concerns will be discussed for this vulnerable group, who are considered unable to give informed consent. Finally, we will speculate how past and current research can influence the future of collaborative, creative methods with people living with advanced dementia.
Paper short abstract:
I will present an ongoing study exploring how people with dementia and carers manage multiple medicines. By combining ethnographic observation and video recording with creative diary data collection methods, this study promotes inclusion of participants with differing cognitive and linguistic skills
Paper long abstract:
The number of people living with dementia who experience polypharmacy (taking five or more medicines) is growing. Managing multiple medicines is increasingly recognised as ‘work’ that creates a burden for people with dementia and informal carers (family and friends) who support them. It is crucial to understand the experiences of people with dementia and informal carers as we seek to reduce this burden. Although the burden is gradually being recognised in research and health policy, the voices of people with dementia are largely absent from literature and professional guidance. In part, this is due to the choice of traditional interviews and focus groups to explore medicines experiences, methods which privilege intact memory and communication skills.
This paper presents an ongoing study using two innovative approaches to exploring experiences of people with dementia, linguistic ethnography (LE) and a modified diary interview method (Bartlett, 2012). LE draws together linguistic and ethnographic methodologies, integrating micro-analysis of language with detailed observations of the context. Modified diary interview method is a participatory method which combines creative methods in diary keeping – writing, photo or audio – with interviews based on diary artefacts, to support recall and provide openings into other ways of knowing.
Specifically, I will ask 1) how can these methods promote inclusion for people with dementia? 2) what challenges and limitations are there in combining ethnographic, linguistic and diary interview methods with people with dementia during the COVID-19 pandemic?
Paper short abstract:
This paper questions the impact of formal ethics requirements on research with very old, vulnerable nursing home residents, ultimately asking whether a one-size fits all approach to ethics is at odds with ensuring a truly ethical approach to ethnographic research.
Paper long abstract:
Based on on-going ethnographic fieldwork in two nursing homes in northern Denmark, this paper will address challenges experienced in putting formal ethics requirements into practice. I consider how to unite procedural ethics with actual, lived ethics, when researching with vulnerable participants. From a research project that considers perspectives on care, dignity and well-being of oldest old nursing home residents, many of whom are cognitively impaired, I bring forward the story of one resident. The paper will center on this resident, who wanted to share her experiences with what she had perceived as inadequate care, but who baulked once the wordy consent form was produced. The resident panicked that her words could now be used against her, that talking with the researcher would (further) compromise her care. She was caught in a bind, on the one hand she had a deep desire to tell her story, on the other the piece of paper in her hand threatened to trigger her depression. Based on the case of this resident, the paper will address how we can ensure that vulnerable voices are brought to the fore in a truly ethical way.
Paper short abstract:
Reflecting on a programme of research in autism and learning disability services, this paper demonstrates the value of collaborative enquiry with supported people and practitioners to better include those with diverse thinking and communication styles in research and service provision.
Paper long abstract:
This paper reflects on a programme of applied research in services for autistic people in Scotland, many of whom also have an intellectual disability. The ethical imperatives for making autism research more inclusive parallel the drive for better involving supported autistic people in decisions about their services. At Scottish Autism methods for engaging people with a range of communication needs in both research and decisions about service provision have developed together. This has been achieved through a collaborative process that de-centres the professional researcher and makes space for supported autistic people and practitioners to undertake critical enquiry and innovation.
Drawing on anthropological thinking, the programme has eschewed standardised research measures in order to amplify the voices of supported autistic people in whatever communication medium they prefer. Drawing on methods established in day-to-day practice, we have utilised visual supports, video work, assisted communication apps, and participant observation to capture the experiences of supported autistic people and to navigate consent to participate. Our work stresses the need for authenticity of voice, expressed in a range of communication media, in a context where supported people’s voices are often occluded by those of others.
Departing from deficit-focused narratives of impairment and instead considering diverse sociality, thinking and communication styles, this approach contrasts much of the clinical and psychological research that dominates this field. This is a shift that anthropologists, sensitive to multiple ways of communicating and being in the world, should be well-placed to make.