13 research outputs found
(Dis)continuities in cancer care: An ethnographic approximation to practices of disease stratification
Represent: A community engagement roadmap to improve participant representation in cancer early detection research: An Oregon case study
INTRODUCTION: While authentic and sustained community involvement in the research process is critically important to making new technologies and interventions effective and socially acceptable, there is uneven participation across sociodemographic, racial, and ethnic communities in many research areas, including cancer early detection research. Currently, 18% of cancer in the United States impacts Hispanics and Latinos, this population accounts for < 10% of research participants. Understanding barriers and facilitators to cancer early detection research is imperative to the ultimate success of this research. Therefore, the objectives of this study were to: understand Hispanic and Latino community perspectives in participation in cancer early detection research; and identify sustainable and mutually beneficial approaches to community engagement and involvement. METHODS: The Oregon Case Study, led by Oregon Health & Science University's Community Outreach, Research and Engagement (CORE) in partnership with colleagues at Vocal, a partnership between Manchester University NHS Foundation Trust and the University of Manchester and Cambridge University, adopted a participatory research approach to better understand participation in cancer early detection research from the perspectives of Oregon's Hispanic and Latino community members. We implemented two evidence-based community engagement models, the Community Engagement Studio and the Community Readiness Assessment Model. Using a facilitated format prescribed by each community engagement model, community members helped us to answer two research questions: (1) What methods help us increase participation of underrepresented communities in cancer early detection research?; and (2) How can we build trust between researchers and underrepresented communities within cancer early detection research? Quantitative (i.e., descriptive statistic) and qualitative (i.e., thematic analysis) analytic methods were used to measure and assess community knowledge, leadership, beliefs, and resources regarding participation in cancer early detection research. RESULTS: A total of 36 Hispanic and Latino community members participated in the two community engagement models. We identified three emergent themes pertaining to participation in cancer early detection research that include: low-level awareness of cancer early detection research and opportunities for research participation, structural barriers to research participation, and uncertainty of the benefits of research participation. CONCLUSION: Our approach, using two evidence-based community engagement models, yielded valuable insights about perceptions of research participation for Hispanic and Latino community members. These findings, synthesized into three key themes, led to actionable recommendations to increase research participation
REPRESENT recommendations: improving inclusion and trust in cancer early detection research
Detecting cancer early is essential to improving cancer outcomes. Minoritized groups remain underrepresented in early detection cancer research, which means that findings and interventions are not generalisable across the population, thus exacerbating disparities in cancer outcomes. In light of these challenges, this paper sets out twelve recommendations to build relations of trust and include minoritized groups in ED cancer research. The Recommendations were formulated by a range of stakeholders at the 2022 REPRESENT consensus-building workshop and are based on empirical data, including a systematic literature review and two ethnographic case studies in the US and the UK. The recommendations focus on: Long-term relationships that build trust; Sharing available resources; Inclusive and accessible communication; Harnessing community expertise; Unique risks and benefits; Compensation and support; Representative samples; Demographic data; Post-research support; Sharing results; Research training; Diversifying research teams. For each recommendation, the paper outlines the rationale, specifications for how different stakeholders may implement it, and advice for best practices. Instead of isolated recruitment, public involvement and engagement activities, the recommendations here aim to advance mutually beneficial and trusting relationships between researchers and research participants embedded in ED cancer research institutions
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From attitudes to materialities: Understanding bowel control for colorectal cancer patients in London
Among the standard biomedical interventions available to treat cancer, surgery stands for the technique with highest curative potential. However, bowel surgery for eligible colorectal cancer patients creates important issues of bowel motility and faecal incontinence, who have to learn how to get acquainted with their modified bodies over time. A fundamental type of body modification occurs when a stoma is temporarily or permanently created. In this chapter, I unpack the socio-material practices that make up the body with stoma in order to complement academic perspectives than understand the challenge of faecal incontinence from the point of view of its effects on the individualâs self-image and integration into social dynamics. Drawing on three ethnographic cases, I offer a description of the practices through which the stoma is managed. I shed light on the preconditions of bowel control for people with stomas. By doing that, I complicate the concept of âadjustmentâ widely used by clinical practitioners to assess the extent to which a person undergoing stoma formation is able to cope with the demands and consequences of the surgery
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Emotion Work during Colorectal Cancer Treatments.
The emotional texture of colorectal cancer treatments in a British oncology clinic provides insight into the ways that patients, their relatives, and health professionals deal with the suffering that cancer poses. In cancer care, verbalizing emotional reactions is understood as a healthy way of dealing with troublesome emotions. Yet, a type of silence, here understood as "not getting upset in front of each other," helps participants to preserve relationships. This idea contributes to our understanding of silence as a relational form of moral work that seeks to preserve the well-being of others.CONICYT/Becas Chile 2014 (72150288
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Game-changing? When Biomarker Discovery and Novel Forms of Patient Work Meet.
I analyze the promised efficacy of Pembrolizumab, an immunotherapy regime under clinical trial for patients with metastatic colorectal cancer. Drawing on anthropological fieldwork with patients and health professionals in a gastrointestinal cancer clinic in London, UK, I tease out the dynamics through which scientists and clinicians assemble personalized technologies to halt cancer growth in patients' bodies; what patients undergo in order to participate in these innovations; and the constraints that restrict the efficacy of these treatments. Beyond examining the treatment possibilities that clinical trials offer, I illuminate some of the gaps made visible when personalization happens from below.Corporacion Nacional de Ciencia y Tecnologya, CONICYT, Chile.
Philomathia Foundatio
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Disjunctive belongings and the utopia of intimacy: violence, love and friendship among poor urban youth in neoliberal Chile
The paper analyses practices of intimacy among youth in a poor, crime-ridden neighbourhood of Santiago. It argues that their sense of belonging to their neighbourhood and broader society is disjunctive: they inhabit the nationstate without complying with expectations of proper citizenship. Similarly, they dwell in their neighbourhood without identifying with it. Instead, they turn to intimate relations with friends and lovers as spaces of belonging. Through these often failing relationships, they pursue emotional and socioeconomic stability and seek to fulïŹl expectations of social becoming and mobility. Drawing on Berlantâs (2007)understanding of intimacy as a normative, yet utopian, aïŹective promise that allows for imagining possibilities of a good life and Dasâ (2010) suggestion that romantic love can be a moral exercise in the realisation of an adjacent self, we argue that intimacy constitutes a key site in the quest for social belonging among subaltern youth in neoliberal Chile.This research was supported by the Chilean Home O ïŹce through the Fondo Nacional de Seguridad PĂșblica (2012)
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'Hard-to-reach'? Meanings at the margins of care and risk in cancer research
Within UK public health initiatives researchers and policymakers constantly attempt to define and understand different patient profiles based on the ways in which eligible users engage with available services or do not; some of the most elusive populations are described as hard-to-reach. This seemingly homogenising catch-all category - 'hard-to-reach' - has been used to outline people who evade cancer prevention efforts (as described in academic literature) because they are: "ill informed", "not interested", or "facing barriersâ, all of which ostensibly prevent them from engaging with the discourses promoted by available services. Through exploratory fieldwork on the themes of cancer prevention, risk, and care with 100+ people from so-called hard-to-reach populations including: those affected by physical disabilities; mental health conditions; people 64+; people in disparate rural areas; rough sleepers; Gipsy Roma Travellers; recovering addicts; and migrants; we have set out to ethnographically examine the category of hard-to-reach in a single and vastly diverse English region. In addition to tracing this category through relevant literature in cancer prevention, we will present an ethnographic overview of the groups within the region, focusing on the ways that different hard-to-reach communities conceive of care and risk. We argue that conceptualising people as hard-to-reach risks conflation of the diverse dynamics of social exclusion with epistemic opacity, potentially contributing to long-standing inequalities in cancer research and care
Cancer, COVID-19, and the need for critique.
In this open letter we examine the implications of the coronavirus disease 2019 (COVID-19) pandemic for cancer research and care from the point of view of the social studies of science, technology, and medicine. We discuss how the pandemic has disrupted several aspects of cancer care, underscoring the fragmentation of institutional arrangements, the malleable priorities in cancer research, and the changing promises of therapeutic innovation. We argue for the critical relevance of qualitative social sciences in cancer research during the pandemic despite the difficulties of immersive kinds of fieldwork. Social science research can help understand the ongoing, situated and lived impact of the pandemic, as well as fully underline its socially stratified consequences. We outline the risk that limiting and prioritising research activities according to their immediate clinical outcomes might have in the relational and longitudinal understanding of cancer practices in the UK. Finally, we alert against potential distortions that a "covidization" of cancer research might entail, arguing for the need to maintain a critical point of view on the pandemic