Making it Personal

2020 ◽  
Author(s):  
Tanya Kant
Keyword(s):  
Cultural Capital ◽  
Focus Groups ◽  
Lived Experience ◽  
Identity Construction ◽  
Knowledge Production ◽  
Full Length ◽  
Tailored Information ◽  
The Web

The encounter of “personalized experiences”—targeted advertisements, tailored information feeds, and “recommended” content, among other things—is now a common and somewhat inescapable component of digital life. More often than not however, “you” the user are not primarily responsible for personalizing your web engagements: instead, with the help of your search, browsing, and purchase histories, your “likes,” your click-throughs, and a multitude of other data you produce as you go about your day, your experience can “conveniently”—and computationally—be personalized on your behalf. This book explores a host of new questions that emerge from web users’ encounters with these forms of algorithmic personalization. What do users “know” about the algorithms that apparently “know” them? If personalization practices seek to act on users’ behalf (for instance, by deciding what content is personally relevant), then how do users retain or relinquish their autonomy? Indeed, what kinds of selfhoods are made possible when personalization algorithms intervene in identity construction? Making It Personal is the first full-length monograph to critically analyze the sociocultural implications of algorithmic personalization through the accounts and testimonies of web users themselves. At the heart of the book are interviews and focus groups with web users who—through a myriad of resistant, tactical, resigned, or trusting engagements—encounter algorithmic personalization as part of their lived experience on the web. The book proposes that for those who encounter it, algorithmic personalization creates new implications for knowledge production, autonomy, cultural capital, and formations of self.

scholarly journals Use of Web Conferencing Technology for Conducting Online Focus Groups Among Young People With Lived Experience of Suicidal Thoughts: Mixed Methods Research (Preprint)

2019 ◽  
Author(s):  
Jin Han ◽  
Michelle Torok ◽  
Nyree Gale ◽  
Quincy JJ Wong ◽  
Aliza Werner-Seidler ◽  
...  
Keyword(s):  
Young People ◽  
Focus Group ◽  
Focus Groups ◽  
Lived Experience ◽  
Suicide Prevention ◽  
Prevention Research ◽  
Web Conferencing ◽  
Suicidal Thoughts ◽  
Online Focus Groups ◽  
The Web

BACKGROUND There is an increasing interest in engaging people with lived experience in suicide prevention research. However, young people with suicidal thoughts have been described as a “hard-to-include” population due to time, distance, stigma, and social barriers. OBJECTIVE This study aims to investigate whether conducting synchronous Web conferencing technology–based online focus groups (W-OFGs) is a feasible method to engage young people with lived experience of suicidal thoughts in suicide prevention research. METHODS Young people aged between 16 and 25 years and living in Sydney, Australia, were recruited through flyers, emails, and social media advertisements. The W-OFGs were established using a Web conferencing technology called GoToMeeting. Participants’ response rate, attendance, and feedback of the W-OFGs were analyzed to determine whether the W-OFG system is feasible for suicide prevention research. Researchers’ reflections about how to effectively implement the W-OFGs were also reported as part of the results. RESULTS In the pre–W-OFG survey, 39 (97.5%) young people (n=40) chose to attend the online focus group. Among the 22 participants who responded to the W-OFG invitations, 15 confirmed that they would attend the W-OFGs, of which 11 participants attended the W-OFGs. Feedback collected from the participants in the W-OFG and the post–W-OFG survey suggested that online focus groups are acceptable to young people in suicide prevention research. Considerations for selecting the Web conferencing platform, conducting the mock W-OFGs, implementing the risk management procedure, inviting participants to the W-OFGs, and hosting and moderating the W-OFGs as well as a few potential ethical and pragmatic challenges in using this method are discussed in this study. CONCLUSIONS The Web conferencing technology provides a feasible replacement for conventional methods, particularly for qualitative research involving vulnerable populations and stigmatized topics including suicide prevention. Our results indicate that this modality is an optimal alternative to engage young people in the focus group discussion. Future studies should compare the data collected from the Web conferencing technology and conventional face-to-face methods in suicide prevention research to determine if these two methods are equivalent in data quality from a quantitative approach.

scholarly journals Use of Web Conferencing Technology for Conducting Online Focus Groups Among Young People With Lived Experience of Suicidal Thoughts: Mixed Methods Research

10.2196/14191 ◽  
2019 ◽  
Vol 6 (10) ◽  
pp. e14191 ◽  
Author(s):  
Jin Han ◽  
Michelle Torok ◽  
Nyree Gale ◽  
Quincy JJ Wong ◽  
Aliza Werner-Seidler ◽  
...  
Keyword(s):  
Young People ◽  
Focus Group ◽  
Focus Groups ◽  
Lived Experience ◽  
Suicide Prevention ◽  
Prevention Research ◽  
Web Conferencing ◽  
Suicidal Thoughts ◽  
Online Focus Groups ◽  
The Web

Background There is an increasing interest in engaging people with lived experience in suicide prevention research. However, young people with suicidal thoughts have been described as a “hard-to-include” population due to time, distance, stigma, and social barriers. Objective This study aims to investigate whether conducting synchronous Web conferencing technology–based online focus groups (W-OFGs) is a feasible method to engage young people with lived experience of suicidal thoughts in suicide prevention research. Methods Young people aged between 16 and 25 years and living in Sydney, Australia, were recruited through flyers, emails, and social media advertisements. The W-OFGs were established using a Web conferencing technology called GoToMeeting. Participants’ response rate, attendance, and feedback of the W-OFGs were analyzed to determine whether the W-OFG system is feasible for suicide prevention research. Researchers’ reflections about how to effectively implement the W-OFGs were also reported as part of the results. Results In the pre–W-OFG survey, 39 (97.5%) young people (n=40) chose to attend the online focus group. Among the 22 participants who responded to the W-OFG invitations, 15 confirmed that they would attend the W-OFGs, of which 11 participants attended the W-OFGs. Feedback collected from the participants in the W-OFG and the post–W-OFG survey suggested that online focus groups are acceptable to young people in suicide prevention research. Considerations for selecting the Web conferencing platform, conducting the mock W-OFGs, implementing the risk management procedure, inviting participants to the W-OFGs, and hosting and moderating the W-OFGs as well as a few potential ethical and pragmatic challenges in using this method are discussed in this study. Conclusions The Web conferencing technology provides a feasible replacement for conventional methods, particularly for qualitative research involving vulnerable populations and stigmatized topics including suicide prevention. Our results indicate that this modality is an optimal alternative to engage young people in the focus group discussion. Future studies should compare the data collected from the Web conferencing technology and conventional face-to-face methods in suicide prevention research to determine if these two methods are equivalent in data quality from a quantitative approach.

Why is lived experience important for market stewardship? A proposed framework for why and how lived experience should be included in stewarding disability markets

2021 ◽  
Author(s):  
Ariella Meltzer ◽  
Helen Dickinson ◽  
Eleanor Malbon ◽  
Gemma Carey
Keyword(s):  
Lived Experience ◽  
Knowledge Production ◽  
Policy Research ◽  
Market Forces ◽  
Research Knowledge ◽  
Key Points ◽  
People With Disability ◽  
And Control ◽  
Insight Into ◽  
Inputs And Outputs

Background: Many countries use market forces to drive reform across disability supports and services. Over the last few decades, many countries have individualised budgets and devolved these to people with disability, so that they can purchase their own choice of supports from an available market of services.Key points for discussion: Such individualised, market-based schemes aim to extend choice and control to people with disability, but this is only achievable if the market operates effectively. Market stewardship has therefore become an important function of government in guiding markets and ensuring they operate effectively.The type of evidence that governments tend to draw on in market stewardship is typically limited to inputs and outputs and has less insight into the outcomes services do or do not achieve. While this is a typical approach to market stewardship, we argue it is problematic and that a greater focus on outcomes is necessary.Conclusions and implications: To include a focus on outcomes, we argue that market stewards need to take account of the lived experience of people with disability. We present a framework for doing this, drawing on precedents where people with disability have contributed lived experience evidence within other policy, research, knowledge production and advocacy contexts.With the lived experience evidence of people with disability included, market stewardship will be better able to take account of outcomes as they play out in the lives of those using the market and, ultimately, achieve greater choice and control for people with disability.<br />Key messages<br /><ul><li>Market stewardship is key to guiding quasi-markets, including in the disability sector;</li><br /><li>Evidence guiding market stewardship is often about inputs and outputs only;</li><br /><li>It would be beneficial to also include lived experience evidence from people with disability;</li><br /><li>We propose a framework for the inclusion of lived experience evidence in market stewardship.</li></ul>

scholarly journals ’We weren't checked in on, nobody spoke to us’: an exploratory qualitative analysis of two focus groups on the concerns of ethnic minority NHS staff during COVID-19

BMJ Open ◽  
2021 ◽  
Vol 11 (12) ◽  
pp. e053396
Author(s):  
Jehanita Jesuthasan ◽  
Richard A Powell ◽  
Victoria Burmester ◽  
Dasha Nicholls
Keyword(s):  
Focus Groups ◽  
Ethnic Minority ◽  
Lived Experience ◽  
Healthcare Workers ◽  
Well Being ◽  
Small Sample ◽  
Individual Risk ◽  
Future Research ◽  
Healthcare Staff ◽  
Cross Sectional

ObjectiveTo gain exploratory insights into the multifaceted, lived experience impact of COVID-19 on a small sample of ethnic minority healthcare staff to cocreate a module of questions for follow-up online surveys on the well-being of healthcare staff during the pandemic.DesignA cross-sectional design using two online focus groups among ethnic minority healthcare workers who worked in care or supportive roles in a hospital, community health or primary care setting for at least 12 months.ParticipantsThirteen healthcare workers (11 female) aged 26–62 years from diverse ethnic minority backgrounds, 11 working in clinical roles.ResultsFive primary thematic domains emerged: (1) viral vulnerability, centring around perceived individual risk and vulnerability perceptions; (2) risk assessment, comprising pressures to comply, perception of a tick-box exercise and issues with risk and resource stratification; (3) interpersonal relations in the workplace, highlighting deficient consultation of ethnic minority staff, cultural insensitivity, need for support and collegiate judgement; (4) lived experience of racial inequality, consisting of job insecurity and the exacerbation of systemic racism and its emotional burden; (5) community attitudes, including public prejudice and judgement, and patient appreciation.ConclusionsOur novel study has shown ethnic minority National Health Service (NHS) staff have experienced COVID-19 in a complex, multidimensional manner. Future research with a larger sample should further examine the complexity of these experiences and should enumerate the extent to which these varied thematic experiences are shared among ethnic minority NHS workers so that more empathetic and supportive management and related occupational practices can be instituted.

scholarly journals Co-constructing feminist research: Ensuring meaningful participation while researching the experiences of criminalised women

2020 ◽  
Vol 13 (2) ◽  
pp. 205979912092526
Author(s):  
Nicola A Harding
Keyword(s):  
Lived Experience ◽  
Knowledge Production ◽  
Process Management ◽  
Research Process ◽  
Social Contexts ◽  
Feminist Methodology ◽  
North West ◽  
The North ◽  
Meaningful Participation ◽  
Transformative Action

Traditional forms of knowledge production can serve to reproduce the power imbalances present within the social contexts that research and knowledge production occur. With the interests of the discipline of criminology so closely entwined with the criminal justice system, it is no surprise that crime, punishment, rehabilitation and desistance have not been adequately examined from a gendered perspective. This article examines a participatory action research process conducted with criminalised women subject to community punishment and probation supervision in the North West of England. By examining the feminist methodology within which this research is framed, discussions about meaningful collaboration offer insights into the potential for creativity in research to become transformative. Using a range of creative qualitative research methods, specifically map making, photovoice and creative writing, this research attempts to understand the experience of criminalised women. Charting the way in which this research prioritises the collaboration of criminalised women at all stages of the research process, this article proposes that ‘meaningful’ participation is about more than process management. It is only by moving beyond typologies of participation, towards an understanding of how participation in the created research space responds to the groups wider oppression, in this case by overcoming trauma or demonstrating reform, that collaboration with holders of lived experience can uncover subjugated knowledge and facilitate transformative action.

scholarly journals Women’s organizing against extractivism: towards a decolonial multi-sited analysis

2020 ◽  
Vol 13 (1) ◽  
pp. 49-59 ◽  
Author(s):  
Martina Angela Caretta ◽  
Sofia Zaragocin ◽  
Bethani Turley ◽  
Kamila Torres Orellana
Keyword(s):  
Lived Experience ◽  
Knowledge Production ◽  
Analytical Framework ◽  
The Body ◽  
Resource Extraction ◽  
Geographical Knowledge ◽  
Extractive Industry ◽  
Natural Resource Extraction ◽  
The North ◽  
Embodied Water

In Anglophone geography, proposals have called for the decolonization of geographical knowledge production to be focused on tangible and material manifestations of how dialogue is initiated and mediated among different ontologies and epistemologies. We strive to respond to this call by empirically cutting across the American continent to highlight the embodied and transnational dimensions of natural resource extraction. Across the Americas, extractive industries’ water usage often brings corporations into prolonged conflicts with local communities, who mobilize to resist the initiation and/or expansion of extractive activities that they view as threatening to their health, way of life, and their families and communities’ territories. Through two case studies from West Virginia (WV), USA, and Cuenca, Ecuador, we propose an analytical framework capturing how women organize against the extractive industry as a result of embodied water pollution. We do this with the aim of decolonizing geographical knowledge production, as we propose a decolonial, multi-sited analytical approach, which serves to rethink the scale of effects of extractive industry. By showing how resource extraction affects women’s bodies and water while also effectively allowing us to compare and contrast embodied water relations in WV and Ecuador, we better understand how extractivism works across scales—the body, the environment, and transnationally. We contend that a multi-sited approach disrupts the North–South geographical discursive divide and furthers a decolonial geographical approach in making apparent the embodied production and lived experience of territory across various scales. In this piece, we promote debates on decoloniality within Anglophone geography by proposing that we must not only consider epistemologies and spatial ontologies outside the western canon, but engage with practices and theories occurring in different parts of the globe in a simultaneous fashion as well. We call on fellow geographers to do the same.

Hybridity and Identity Performance in Diasporic Context: An Autoethnographic Journey of the Self Across Cultures

2017 ◽  
Vol 18 (1) ◽  
pp. 23-31 ◽  
Author(s):  
Gloria Nziba Pindi
Keyword(s):  
United States ◽  
Lived Experience ◽  
Cultural Values ◽  
Identity Construction ◽  
Native Speaker ◽  
Third Space ◽  
The United States ◽  
Cross Cultural ◽  
Identity Performance ◽  
Ways Of Being

In this autoethnographic article, I am interested in theorizing about how hybridity illuminates my lived experience of identity performed across cultures, and more specifically in diasporic context, at the intersections of various facets of my selfhood: Black, female, postcolonial, African, bi-tribal, diasporic, immigrant, nonnative English Speaker, “French native speaker,” and so on. I use personal narrative as a locus of subjectivity to recount critical moments of my lived experience as a hybrid subject navigating at the borderlands of two cultural worldviews: Congolese and American. My cross-cultural journey reveals a series of challenging and triumphant episodes from my childhood back home to my life in the United States, a journey during which I have experienced both privilege and oppression. My process of identity construction results in the creation of a third space that celebrates difference through new ways of being, encompassing cultural values from both the United States and the Congo. This process is articulated through different ways of being/not being “American” and/or “African” and just being “different.”

scholarly journals How collections end: objects, meaning and loss in laboratories and museums

BJHS Themes ◽  
2019 ◽  
Vol 4 ◽  
pp. 1-27
Author(s):  
BORIS JARDINE ◽  
EMMA KOWAL ◽  
JENNY BANGHAM
Keyword(s):  
Cultural Capital ◽  
Knowledge Production ◽  
Science And Technology Studies ◽  
Social Contexts ◽  
Cultural Value ◽  
Empire Building ◽  
History Of ◽  
Erosion Loss ◽  
Scientific Collections ◽  
Everyday Reality

AbstractCollections are made and maintained for pleasure, for status, for nation or empire building, for cultural capital, as a substrate for knowledge production and for everything in between. In asking how collections end, we shift the focus from acquisition and growth to erosion, loss and decay, and expose the intellectual, material and curatorial labour required to maintain collections. In this introductory essay, we draw together insights from the history of science and from science and technology studies to investigate the dispersal, destruction, absorption, repurposing and repatriation of the diverse scientific collections discussed in the papers that make up this issue of BJHS Themes, and many other collections besides. We develop a distinction first suggested by the curator and bibliographer John Willis Clark between ‘working’ collections of objects valued for the information they hold or produce, and ‘unique’ collections of objects valued for their historical singularity. We show that in many cases, the ‘end’ of an object or collection involves a shift in the dominant account of its cultural value from ‘working’ to ‘unique’ or vice versa. Moving between the laboratory, the museum and difficult-to-classify spaces in between, we argue that ‘ending’ is not anathema to ‘collecting’ but is always present as a threat, or as an everyday reality, or even as a necessary part of a collection's continued existence. A focus on ending draws attention not only to the complex internal dynamics and social contexts of collections, but also to their roles in producing scientific knowledge.

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