Introduction The United Nations Convention on the Rights of Persons with Disabilities asserts that all persons with disabilities have the right to receive the support they require to participate in decisions that affect them. Yet, persons with dementia continue to be excluded from decisions on issues that matter to them. Our planned scoping review seeks to address this gap by documenting the current knowledge on supported decision-making for persons with dementia and informing the next steps for research and practice. Methods and analysis We will use Arksey and O’Malley’s (2005) six-stage framework to guide our review of the English scientific literature (2005 onwards), searching the following databases: MEDLINE, PsycINFO, CINAHL, AgeLine and the Social Science Abstracts. Our review will focus on primary studies examining supported decision-making for persons with dementia, including the voices of those with dementia. Guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews, we will identify (1) domains of supported decision-making discussed in the empirical literature and (2) practices/factors that facilitate or inhibit supported decision-making. Consultations with persons with dementia and their care partners will provide insights into lived experiences, helping identify gaps between research literature and lived realities. The preliminary title and abstract search for eligible articles were conducted between August and October 2023 and updated in June 2024, yielding 56 eligible articles for review. Ethics and dissemination This scoping review will be conducted following the standards of the Tri-Council Policy Statement for Ethical Conduct for Research Involving Humans (1998 with 2000, 2002 and 2005 amendments). The procedures for eliciting feedback from persons with dementia and their care partners were approved by the Office of Research Ethics Board at McGill University (Reference # 23-08-048). Dissemination of review findings to persons with dementia and care partners will occur during ongoing community consultations. Visual aids and brief lay summaries will be used to facilitate input and dialogue. Dissemination to the broader practice and research communities will include workshops conducted in collaboration with study partners and presentations and publications in peer-reviewed forums.
Abstract Across societies, cultures, and political ideologies, autonomy is a deeply valued attribute for both flourishing individuals and communities. However, it is also the object of different visions, including among those considering autonomy a highly valued individual ability, and those emphasizing its relational nature but its sometimes-questionable value. A pragmatist orientation suggests that the concept of autonomy should be further specified (i.e., instrumentalized) beyond theory in terms of its real-world implications and usability for moral agents. Accordingly, this latter orientation leads us to present autonomy as an ability; and then to unpack it as a broader than usual composite ability constituted of the component-abilities of voluntariness, self-control, information, deliberation, authenticity, and enactment. Given that particular abilities of an agent can only be exercised in a given set of circumstances (i.e., within a situation), including relationships as well as other important contextual characteristics, the exercise of one’s autonomy is inherently contextual and should be understood as being transactional in nature. This programmatic paper presents a situated account of autonomy inspired by Dewey’s pragmatism and instrumentalism against the backdrop of more individual and relational accounts of autonomy. Using examples from health ethics, the paper then demonstrates how this thinking supports a strategy of synergetic enrichment of the concept of autonomy by which experiential and empirical knowledge about autonomy and the exercise of autonomy enriches our understanding of some of its component-abilities and thus promises to make agents more autonomous.
In this article, we discuss methodological opportunities related to using a team-based approach for iterative-inductive analysis of qualitative data involving detailed open coding of semistructured interviews and focus groups. Iterative-inductive methods generate rich thematic analyses useful in sociology, anthropology, public health, and many other applied fields. A team-based approach to analyzing qualitative data increases confidence in dependability and trustworthiness, facilitates analysis of large data sets, and supports collaborative and participatory research by including diverse stakeholders in the analytic process. However, it can be difficult to reach consensus when coding with multiple coders. We report on one approach for creating consensus when open coding within an iterative-inductive analytical strategy. The strategy described may be used in a variety of settings to foster efficient and credible analysis of larger qualitative data sets, particularly useful in applied research settings where rapid results are often required.
Recent evidence indicates a widening gap in fruit and vegetable (F/V) consumption between high- and low-income Americans. This gap is related, in part, to decreased access to food retailers that sell fresh F/V in low-income communities. Farmers' markets are identified as a strategy for improving F/V consumption by increasing access to these foods.The aim of this systematic review was to examine literature published from 1994 to 2014 to identify facilitators and barriers of farmers' markets use, particularly among low-income consumers.Peer-reviewed literature was identified in Ebsco Host (Academic Search Complete). Inclusion criteria for abstract review was primary research focused on farmers' market use identifying 87 studies for full-text review. Full-text review identified articles focused on facilitators and/or barriers of farmers' market use resulting in 49 articles. At least two reviewers completed review of all articles.Of the 49 articles, 39% specified inclusion of low-income consumers and fewer than 15% focused on racial and ethnic minorities. Few studies were guided by theory and/or used standardized metrics. Results indicate farmers' market use is influenced by multiple economic, service delivery, spatial-temporal, social, and personal factors. Among studies that included low-income populations (n=19), key barriers to farmers' market use were perceptions that food assistance benefits were not accepted, belief that food variety at farmers' markets was limited, lack of access to transportation, lack of racial/ethnic diversity in the market space, and mismatch between markets and personal lifestyles. There is wide variation in study design and reporting standards and infrequent use of standardized measures limiting comparisons across studies.There is a need to establish valid and reliable metrics and reporting standards for evaluating farmers' markets. Findings may inform interventions, programs, and policies to promote farmers' market use.
Understanding and improving how diverse people work together is a core concern of applied social sciences. This article reports ethnographic observations on a participatory design project in which researchers and adults on the autism spectrum worked together on the design of a new technology—biomusic. Biomusic uses a smartphone application and a wearable sensor to measure physiological signals and translate them into auditory output. Ethnographers were involved in this project, both to facilitate eliciting perspectives of different stakeholders and to observe, record, and reflect on the process. This paper discusses the relationship between ethnography and participatory design in two ways. First, it describes the contribution of ethnography to achieving the goals of participatory design. Second, it draws on ethnographic observations to highlight different strategies people with and without autism used to work together, including strategies put forth by the researchers, strategies already in place in the community, and strategies emerging from the intersection of both. These strategies created a space that was more accessible to many different types of people. Documenting the way that this group worked together challenged several stereotypes about autism and highlighted the role of autistic collaborators as agents.
This project takes an anthropological approach to autism spectrum disorders (ASD) by interrogating the historical and cultural context of ASD within families. It draws from research conducted over summer and fall of 2008 within support groups for parents of children with ASD. It addresses three main philosophies that see ASD as (1) a disability to be treated; (2) a disease to be cured; or (3) a positive “neuro-variation” to be embraced and treated only in ways that assist, not change, the individual. This thesis analyzes the presence of these philosophies in the discourse of parents in support groups, and professionals in the St. Louis field of autism. I find all three are present and often co-existing within one informant’s descriptions. Informed by these approaches, this project looks at the affect of ASD on constructions of American families. I find that ASD challenges expectations of childhood, while simultaneously emphasizing expectations of motherhood and writing out expectations of fatherhood. This work aims to de-naturalize assumptions regarding medicine and family, put different viewpoints in conversation, and serves as a pilot study for further research. These three goals ultimately may lead to new avenues of research for ASD theory and practice. FA C U LT Y M E N T O R : R E B E C C A L E S T E R , P H . D. , A S S I S TA N T P R O F E S S O R O F S O C I O C U LT U R A L A N T H R O P O L O G Y Professor Lester’s research focuses on medical anthropology, gender, embodiment, religion and ritual, psychological anthropology and cross-cultural psychiatry. Linking these issues at various points is her focus on gender, self and the body. She is particularly interested in anorexia as a contemporary ascetic practice. Her current research explores the embodied terrains of sexuality and desire in the anorexic condition. A C K N O W L E D G E M E N T S This study was funded by the Office of Undergraduate Research and advised by Dr. Rebecca Lester in the anthropology department. I would like to thank them both for enabling this project. I also want to thank several individuals who have advised me formally or informally throughout the project: Bradley Stoner, Paul Shattuck, Leonard Green, Gianni Gardiner, and Liz Nickrenz. Finally, my deepest thanks goes to all those from the field who took the time to speak with me. Autism Spectrum Disorders: Ideologies and Families in St. Louis Support Groups
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