Purpose: The aim of this study was to examine what personally mattered to 24 patients who received immuno-oncology (IO) therapy for stage IV non-small cell lung cancer (NSCLC), as well as their families and friends, to understand how they evaluated their cancer treatments and the determinants of the quality of life (QoL) of long-term survivors. Methods: Ethnographic research was conducted with 24 patients who had responded to IO (pembrolizumab, nivolumab, atezolizumab, or durvalumab) for stage IV NSCLC, and their families and friends, evenly split among field sites in Denmark, the USA, and the UK. Data were collected using in-depth qualitative interviews, written exercises, and participant observation. Data analysis methods included interpretative phenomenological analysis, coding, and the development of grounded theory. Researchers spent 2 days with participants in their homes and accompanied them on health-related outings. Results: Our findings reveal that long-term survivors on IO experienced their journey in two phases: one in which their cancer had taken over their lives mentally, physically, and spiritually, and another in which their cancer consumed only a part of their everyday lives. Patients who survived longer than their initial prognosis existed in a limbo state in which they were able to achieve some semblance of normalcy in spite of being identified as having a terminal condition. This limbo state impacted their life priorities, decision-making, experience of patient support, and health information-seeking behaviors, all of which shaped their definitions and experience of QoL. Conclusions: The results of this study, which identify the specific challenges of living in limbo, where patients are able to reclaim a portion of their pre-cancer lives while continuing to wrestle with a terminal prognosis, may inform how cancer research can more effectively define and measure the QoL impacts of IO treatments. Also, they may identify approaches that the cancer community can use to support the needs of patients living in a limbo state. These experiences may not be adequately understood by the cancer community or captured by existing QoL measures, which were designed prior to the emergence of IO and without sufficient incorporation of contextual, patient-driven experience. Implications for Cancer Survivors: Increased awareness of the specific experiences that come with long-term survival on IO may direct how resources should be spent for cancer support for patients and their families. Expanding how QoL is evaluated based on patients’ lived experiences of IO can reflect a more accurate depiction of the treatment’s benefits and harms.

Youth media consumption and disordered eating practices have historically been subjects of moral panics, often resulting in protective, deficit-based interventions like content removal. We argue for interventions which instead equip youth to evaluate and manage risks in their online environments, building upon their existing “information sensibility” practices. Drawing upon ethnographic research and intervention testing with 77 participants in the US and India, we analyze how youth (aged 13–26), including those with diverse political perspectives and those recovering from disordered eating (DE), engage with online news and health information. Participants generally algorithmically encountered (rather than searched for) information online, and their engagement was shaped more by social motivations—like belonging—than truth seeking. Participants interpreted online information collaboratively, relying on social cues and peer validation within their online communities. They demonstrated preference for personal testimonies and relatable sources, particularly those with similar social identities. We propose resilience-building interventions that build upon these youth online information practices by: (1) leveraging peer networks, promoting critical information engagement through collaborative learning and peer-to-peer support within online communities; (2) developing social media sensibility, equipping youth to critically evaluate information sources in situ; (3) providing pathways offline, connecting youth to desired in-person communities; and (4) encouraging probabilistic thinking.

This paper investigates the relationship between social media and eating practices amongst 42 internet users aged 18-26. We conducted in-person ethnographic research in the US and India to observe how young people navigated eating and health information online. Participants portrayed themselves online using a vocabulary we have labeled “the good life": performing holistic health through diet, exercise, and idealized lifestyles. We observed participants engaging in behaviors of disordered eating while actively eschewing them. When online, participants valued personal testimonies, and readily tested tips from content creators who they believed shared similar beliefs and bodies to them. In doing so, they did not engage in probabilistic thinking and opened themselves to potential harm. We found that social media feeds did not unidirectionally influence participants—they often reflected participants’ internalized views of health, in an intertwined, non-linear journey. Reducing the online spread of disordered eating practices requires addressing it within young people's social context.

This study explores how young adults (18–24 years old) in India and the US navigate information in an era of constant online presence. As social media has evolved from an information source to a space where individuals lead significant portions of their social lives, and as generative AI has replaced traditional search engines, this study finds that existing frameworks for information seeking, trust heuristics, and literacy interventions require expansion. In this paper, we highlight the significant role of emotional defense and social dynamics in shaping information seeking, avoidance, and selective processing. Using ethnographic methods, we find that, in an era of being “always on,” young adults strive to maintain emotional equilibrium, subconsciously fluctuating between “information modes”: a conceptual framework describing a range of embodied states that entail varying levels of readiness for deliberative thinking and predisposition toward heuristic shortcuts. Participants in this study primarily engaged in information modes that bypassed traditional media literacy practices—such as critical thinking and source evaluation—because they were focused on entertainment, or “light” content they found soothing, which they saw as not requiring scrutiny. Significantly, information sourced from generative AI often felt “light” because it was perceived to only impact themselves. In this study, content without clear social consequence was a determining factor in what felt worthy of scrutiny. Our findings highlight the crucial role of emotional and social self-regulation in young adults’ everyday practices of information seeking and evaluation, emphasizing the need for literacy approaches that account for the emotional and social dimensions of online engagement when developing interventions for young adults in rapidly changing digital ecosystems.

Introduction Existing qualitative research on early-stage Parkinson’s disease draws on patients’ reported disease experience, aiming to capture the symptoms and impacts most relevant to patients living with the disease. As a complement to this research, the present study investigated the patient experience of early-stage Parkinson’s disease from a holistic, ethnographic perspective. We explored the attitudes, beliefs, and social structures that shape how people understand and adapt to life with early-stage Parkinson’s disease. Methods Researchers interviewed 30 people with early-stage Parkinson’s disease, 10 relatives, and 10 neurologists and movement disorder specialists in the USA and Germany. Many of these interviews took place in-person, allowing researchers to spend time in participants’ homes and witness their daily lives. A multidisciplinary team of social scientists, clinical researchers, and patient organization representatives led the mixed-methods study design and analysis. In-depth ethnographic interviews yielded qualitative insights, with a quantitative survey following to assess their prevalence in a larger sample of 150 patients. Results In addition to developing a patient life experience pathway of early-stage Parkinson’s disease, we identified five key thematic findings that provide insight into how the clinical features of the disease become meaningful to patients on the context of their daily lives, family relations, and subjective well-being: (1) People with early-stage Parkinson’s disease start coming to terms with their disease before receiving a medical diagnosis; (2) Acceptance is not a finalized achievement, but a cyclical process; (3) People with early-stage Parkinson’s disease “live in the moment” to make the future more manageable; (4) Slowing disease progression is an important goal driving the actions of people with early-stage Parkinson’s; and (5) People with early-stage Parkinson’s disease value information that is grounded in lived experience and relevant to their stage of disease progression. Conclusion This holistic, ethnographic approach to patient life experience provided five key thematic findings that complement insights from qualitative and quantitative datasets on early-stage Parkinson’s disease. An enhanced understanding of how early-stage Parkinson’s symptoms impact patients’ health-related quality of life and their broader social lives can help us better understand how patients make decisions about their usage of healthcare services and therapies.

This paper investigates the relationship between social media and eating practices amongst 42 internet users aged 18-26. We conducted an ethnography in the US and India to observe how they navigated eating and health information online. We found that participants portrayed themselves online through a vocabulary we have labeled "the good life": performing holistic health by displaying a socially-ideal body. In doing so, participants unconsciously engaged in behaviors of disordered eating while actively eschewing them. They also valued personal testimonies, and readily tested tips from content creators who shared similar beliefs and bodies to them. In doing so, they discarded probabilistic thinking and opened themselves to harm. Our study found that their social media feeds did not unidirectionally influence participants - they also reflected participants' internalized views of health, in an intertwined, non-linear journey. Reducing the online spread of disordered eating practices requires addressing it within young people's social context.