Tracking Transformations in Health Movement Organisations: Alzheimer's Disease Organisations and their Changing ‘Cause Regimes’

O’Donovan, Órla; Moreira, Tiago; Howlett, Etaoine

doi:10.1080/14742837.2013.777330

Cited by 9 publications

(4 citation statements)

References 22 publications

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“…First, AD is an important area where issues of representation and advocacy are pertinent (Golander and Raz 2000). While traditional advocacy for AD is dominated by caretaker relatives, other associations for AD publicly identify themselves as caretakers' and patients' organizations, reflecting a process of hybridization (O'Donovan et al 2013). Second, the current debate around AD is characterized by two important upheavals: On the one hand, critical voices impeach the medicalization, stigmatization, and social exclusion related to AD (Werner et al 2012;Lock 2013;Hazan 2014).…”

Section: Introductionmentioning

confidence: 99%

Patient Representation and Advocacy for Alzheimer Disease in Germany and Israel

et al. 2018

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This paper analyses self-declared aims and representation of dementia patient organizations and advocacy groups (POs) in relation to two recent upheavals: the critique of social stigmatization and biomedical research focusing on prediction. Based on twenty-six semi-structured interviews conducted in 2016–2017 with members, service recipients, and board representatives of POs in Germany and Israel, a comparative analysis was conducted, based on a grounded theory approach, to detect emerging topics within and across the POs and across national contexts. We identified a heterogeneous landscape, with the only Israeli PO focusing strongly on caretakers, whereas in Germany several POs claim to represent this patient collective. Shared aims of all POs were fighting social stigma, balancing the loss of patients’ individual autonomy, and the well-being of caretakers. By highlighting the emergence of new groups of dementia self-advocacy against the more traditional advocacy by others, this study highlights how advocacy and representation in the context of AD are embedded in the discursive context of stigmatization and revised disease conception. Future developments in early diagnosis and prediction of dementia, with more affected people likely to conduct dementia self-advocacy, might challenge existing representation structures even more.

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Section: Introductionmentioning

confidence: 99%

Patient Representation and Advocacy for Alzheimer Disease in Germany and Israel

et al. 2018

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“…A história de parentes de pessoas diagnosticadas com a Doença de Alzheimer que, de alguma maneira, conseguem se articular com redes maiores -sejam de médicos, pesquisadores, advogados, políticos -é longa e tem um papel central na transformação dessa doença em um tema de interesse público (FOX, 1989;BE-ARD, 2004;O'DONOVAN, et al, 2013). Mary se insere, assim, em um conjunto de parentes engajados na busca por pesquisa, cura e cuidado para além do que há no mercado e do conjunto de medicamentos existentes.…”

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Óleo de coco, banha de porco, prazer de comer e os deslizamentos do saudável: manejos de versões da Doença de Alzheimer a partir de terapias alimentares

Engel

2020

ACENO

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Durante uma consulta em um ambulatório da demência do Distrito Federal, presenciei certa disputa que me fez atentar para a centralidade das práticas alimentares para a Doença de Alzheimer. A partir de desdobramentos dessa consulta e posteriores entrevistas e observações realizadas entre 2016 e 2018 – ao longo de uma pesquisa etnográfica sobre as terapias da Doença de Alzheimer –, reflito sobre disputas e testagens de alimentos como tipo de terapia; as quais, concluo, fazem parte central nas produções de distintas versões acerca do que é a doença e do que é saúde e corpo nesse contexto.

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“…An ethnographic approach to social movements allows researchers to gain an in-depth understanding of “the meanings of movements that would be difficult if not impossible to learn through other methods alone” (Lichterman 1998, 402). Therefore, it is often the methodology of choice to study the complexities, practices, and nuances of engaging in social movements (e.g., Montenegro 2018; O’Donovan, Moreira and Howlett 2013; Roberts et al 2016). To engage in ethnographic research is however an approach that requires “time, patience, energy, and the willingness to immerse physically, socially, cognitively, and emotionally in others’ lives” (Smith and Atkinson 2017, 637).…”

Section: Introductionmentioning

confidence: 99%

Disclosing Otherness: Situated Knowledges and the Politics of Ethnographic Approaches to the #WeAreNotWaiting Movement in Type 1 Diabetes and Beyond

Jansky

2023

Journal of Contemporary Ethnography

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In this article, I reflect on my empirical engagement in the global (digital) health movement #WeAreNotWaiting in the context of Type 1 Diabetes. I want to take my relationships and interactions in this community as a starting point to discuss the multifacetedness of doing ethnographic research in health-political activist communities while not being affected by the health conditions the research participants are affected by and not sharing their explicit personal-political aim. Building on Donna Haraway’s conceptualization of situated knowledge and Kim TallBear’s notion of ethics of accountability, I empirically retrace three accounts of disclosing otherness in my empirical engagement that were generative for my understanding of the movement. I suggest that the moments where one needs to explain oneself, where one is met with skepticism, or experiences tensions, might be uncomfortable and challenging but can be generative. To engage with them can contribute to the accountability of the ethnographer.

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Tracking Transformations in Health Movement Organisations: Alzheimer's Disease Organisations and their Changing ‘Cause Regimes’

Cited by 9 publications

References 22 publications

Patient Representation and Advocacy for Alzheimer Disease in Germany and Israel

Patient Representation and Advocacy for Alzheimer Disease in Germany and Israel

Óleo de coco, banha de porco, prazer de comer e os deslizamentos do saudável: manejos de versões da Doença de Alzheimer a partir de terapias alimentares

Disclosing Otherness: Situated Knowledges and the Politics of Ethnographic Approaches to the #WeAreNotWaiting Movement in Type 1 Diabetes and Beyond

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