Lived Experience Research Articles

Dementia caregiving during the COVID-19 pandemic: an interpretative phenomenological analysis of caregivers' experiences.

To explore the lived experience of informal dementia caregivers during the COVID-19 pandemic. Interpretative Phenomenological Analysis (IPA) was employed. Eight primary informal caregivers were recruited from a community mental health service for older people when attending in their role as caregiver of a service-user. Semi-structured interviews were conducted at home or in the clinic based on the participants' convenience and preference. IPA was completed following Smith and colleagues framework for analysis. Six group experiential themes, each with a number of subthemes, emerged from the cross-case interpretative analysis: the ambivalent experience of caregiving (subtheme: those complex emotional experiences); navigating lockdown: lived challenges and opportunities (subthemes: the pervasive fear, intensification of existing struggles, being prevented from caring for a loved one, and lockdown as a time for opportunity); transitioning out of lockdown (subthemes: regaining freedom, but restricted freedom after all and being in a lockdown of one's own); the present with COVID-19, but mostly with dementia (subthemes: dementia, a disease that does not pause, and 'takeaways' from the journey); looking into the future (subthemes: embracing COVID-19 and the true needs); and a word on coping (subtheme: managing it all as best one can). Findings demonstrate the significance of the meaning caregivers ascribed to their experiences on their wellbeing and ability to cope in times of COVID-19 and thereafter. Gaining an understanding of the caregivers' unique experiences is crucial to appreciate how to best support them.

The Digital Sufi Gaze: Between Love, Longing and Locality in COVID Britain

This article examines British Sufi responses to the COVID-19 pandemic within the broader context of Muslim experiences of and reactions to the pandemic. Set within a discussion pertaining to classical and contemporary expressions of Sufism, this article explores Sufi phenomena, including the murshid–murid (Sufi master–novice) dynamic, collective gathering and Sufi gaze (nazar) and whether these phenomena were possible within the inevitable digital environments Sufis were forced into as a result of the COVID pandemic and subsequent lockdowns, experienced in Britain. The author explores Sufi social and intellectual phenomena within classical and contemporary literature in relation to Sufi experiences in the West. She concludes that varied lived experiences and differing views on Sufism and both its classical and contemporary expressions were brought into question as a consequence of the COVID pandemic, the exploration of which are necessary in juxtaposition to one another to add nuance and depth and create holistic research of Sufi communities and Sufism more broadly, within contemporary Britain and further afield.

Empathy and Listening in Research-Based Theatre

This article shares excerpts from the playscript Unload, which brings to life research on military veterans and the lived experience of civilians carrying trauma. Co-developed by veterans, artists, researchers, and counsellors, the play follows a veteran’s journey to overcome challenges in and out of uniform and sees him guide a civilian friend through unspoken grief that has been haunting him for decades. This research-based play artistically synthesizes extensive data collected from focus groups, interviews, and surveys conducted with veterans, artists, counsellors, and audiences involved in a five-year research project. This article begins by situating the research-based play within the literature on theatre and empathy. Then, alongside excerpts from the playscript, the authors, who were co-writers of the script and members of the cast, offer insights gleaned from the performance of Unload.

What works? Researching participants’ experiences of a social policy RCT through qualitative interviews

Increasingly, evidence-based policymaking, in the form of randomized control trials (RCTs) in particular, are advocated as a means for studying the effects of planned social policy measures. Additionally, a Finnish basic income experiment was conducted in 2017–2018 as an RCT as a means of exploring alternative policy solutions, which gained widespread national and international political, media and scholarly attention. Despite the popularity of RCTs, there is a lack of studies of participants’ experiences of participation in social policy RCTs. In this article, we depart from the notion of ‘lived experiences’ when investigating a bottom-up participant perspective of the Finnish social policy experiment with the purpose of contributing to the understanding and future planning of ethically and methodologically sustainable policy experiments. Drawing on a qualitative, in-depth interview study of 81 Finnish basic income experiment participants, we examined their lived experiences and related views on the experiment. The analysis shows that although the idea of experimenting to demonstrate ‘what works’ in social policy was supported by participants in principle, various questions arose both concerning the tactical and political purposes of the experiment and the nature of scientific ‘evidence’. Furthermore, the results demonstrate that the impact of the media and political attention often surrounding more controversial policy experiments, like the Finnish one, can also challenge the RCT principles of ‘non-contamination’. Participants in highly politicized experiments also easily feel that they become objects of strong moral expectations and judgements, which in the Finnish basic income case clearly resulted in feelings of frustration and personal failure.

How life events may confer vulnerability to addiction: the role of epigenetics

Substance use disorder (SUD) represents a large and growing global health problem. Despite the strong addictive potency of drugs of abuse, only a minority of those exposed develop SUDs. While certain life experiences (e.g., childhood trauma) may increase subsequent vulnerability to SUDs, mechanisms underlying these effects are not yet well understood. Given the chronic and relapsing nature of SUDs, and the length of time that can elapse between prior life events and subsequent drug exposure, changes in SUD vulnerability almost certainly involve long-term epigenetic dysregulation. To validate this idea, functional effects of specific epigenetic modifications in brain regions mediating reinforcement learning (e.g., nucleus accumbens, prefrontal cortex) have been investigated in a variety of animal models of SUDs. In addition, the effects of epigenetic modifications produced by prior life experiences on subsequent SUD vulnerability have been studied, but mostly in a correlational manner. Here, we review how epigenetic mechanisms impact SUD-related behavior in animal models and summarize our understanding of the relationships among life experiences, epigenetic regulation, and future vulnerability to SUDs. Despite variations in study design, epigenetic modifications that most consistently affect SUD-related behavior are those that produce predominantly unidirectional effects on gene regulation, such as DNA methylation and histone phosphorylation. Evidence explicitly linking environmentally induced epigenetic modifications to subsequent SUD-related behavior is surprisingly sparse. We conclude by offering several directions for future research to begin to address this critical research gap.

Narratives of pride: Afghan migrant laborers in Iran

This article recounts the stories of Afghan migrants who have returned from Iran to Afghanistan. I frame these accounts of ordinary Afghans’ life experiences as “narratives of pride,” juxtaposing these stories with narratives of victimhood that dominate the immigration discourse on Afghanistan and more generally. In these narratives, migrants are predominantly characterized as victims in need of being saved. This article instead asks: why do returnees from Iran focus mostly on the positive parts of their mobility while downplaying the difficulties of dealing with the Iranian state, which does not have a good track record of dealing with migrants? In telling stories of years of living and working in Iran or other countries, I find that my interlocutors characterize themselves as sophisticated men of the world with a deep understanding of social and political phenomena that give them the ability to navigate life in foreign lands—an image far from victimhood as it is commonly portrayed in the literature and media. The article argues that in order to better understand the agency of migrants, it is crucial to form long-term connections with them to gain a more nuanced understanding of their experiences, rather than simply reproducing stories of victimhood.

Chronotopes of home and dislocation: recognising the lived experiences of refugees

ABSTRACT Forced migrants are often presented in public and private discourse from a reductive perspective focusing solely on their vulnerability and their status as refugees, without acknowledging other aspects of their identity and life history. This article investigates how refugee-background participants in qualitative research interviews drew on the chronotopes of home to construct a narrative of origin that foregrounded diverse aspects of their identity and emphasised their lived experiences in a fuller sense. In their narratives, participants contested representations of their home countries and of historical events, as well as representations of themselves, to challenge reductive identity constructions. Further, the narratives suggested that while widely known, mass-mediated chronotopes may assist in initial orientation to a location and event or time period, these generally provide a limited, and sometimes a highly contestable, representation of reality.

Top Ten Tips Palliative Care Clinicians Should Know About Hospice Live Discharge.

Hospice care is designed to support the medical and psychosocial needs of individuals with serious illness and their caregivers through the dying process. Some individuals, though, leave hospice prior to death, generally referred to as disenrollment or a "live discharge." Live discharge from hospice is a common and often distressing issue for hospice patients, their caregivers, and also for hospice professionals and agencies. This paper discusses common issues surrounding live discharge that clinicians and other healthcare professionals should consider when dealing with live discharge in their own clinical practices. Where applicable, we provide practical steps for hospice and palliative care clinicians to better support patients and families through this critical care transition. Further, we offer strategic directions interprofessional clinicians can take to affect systemic change to improve live discharge experiences.

Understanding the Local Complexities in Land Law Reforms: The Case of Land Inalienability in Ethiopia, 1991–2018

Abstract Postcolonial governments often restrict the market alienability of land rights for various policy reasons. One policy aims to treat all citizens equivalently and safeguard vulnerable social communities equally, as an unrestrained land market could allow one affluent social group to buy out one that is less affluent. Another policy is to set a standard that is easy to apply in the same way in every case, as a bright-line rule banning land alienation is simpler to administer than a standard that requires case-by-case considerations. Today, in Ethiopia, such laws face opposition from proponents of a free market economy and private property rights. Thus, international development institutions and influential Ethiopians are spearheading an ambitious reform to Ethiopia’s post-socialist law that bans land alienability, arguing that the law has impeded social and economic progress. This article shows, however, that the legal ban has never prevented land transfers. Many people have utilized legal constructs such as gifts, bequests, loans, and leases to sell their land. Such transfers have circumvented the ban amidst aggressive land expropriation by the state and other agents. These intricate local and national dynamics undercut the misleading sense of regularity created by the inalienability law, raising serious questions about the persistent demand by international development institutions to privatize land rights and create land markets through law reform without paying close attention to the lived experiences at the local level.

"No such thing as good cancer": a qualitative exploration of the experience of early-onset thyroid cancer in survivors.

The incidence of thyroid cancer has increased exponentially in recent decades. At the same time, there is a growing concern surrounding the overdiagnosis of indolent thyroid cancer, leading to invasive and potentially unnecessary interventions that can significantly impact young patients' lives. Yet, the experiences of survivors of thyroid cancer have been largely understudied. The purpose of this study was to explore the experiences of survivors of early-onset thyroid cancer. The qualitative research design of hermeneutic phenomenology guided this study. Participants completed a demographic survey and semi-structured interview that was subsequently transcribed verbatim and analyzed using reflexive thematic analysis. Thirty-six survivors of thyroid cancer (83% female, median age at diagnosis: 37.1years, median age at interview: 43.5years) participated. Participants' experiences were characterized by two themes: (1) reconciling the meaning of the "c" word (cancer) as a dangerous and life-threatening diagnosis with lived experience of thyroid cancer and (2) thyroid cancer leaves patients with lifelong physical and emotional scars. Survivors of early-onset thyroid cancer experience significant short and late effects on their physical and psychosocial well-being. Survivors shared some of the difficulties of having to reconcile what they were told was a "good cancer" and their previously held beliefs of cancer, including feeling lost in the healthcare system and like they could not access services or be impacted because they had been told they had "good cancer." Increased communication of risks and acknowledgement of the perceptions surrounding cancer is needed to help patients make better informed decisions and feel supported throughout their thyroid cancer journey. Gaps in care pathways, especially adjustments post-treatment, should be filled to help support these survivors.

Listening to the Perspectives of Black Women on Perinatal Health Disparities: Reversing the Tide and Improving Outcomes.

Pregnancy-related health in the USA fares worse than similarly resourced countries and the gap continues to widen. This trend however is disproportionately experienced by women of color. We have come to understand that this is due to the systems and structures that perpetuate racism. Despite our awareness of this, the voices of the community impacted by these systems have been largely left out of research. The authors aimed to utilize participatory research methods within a qualitative design to askBlack pregnant and parenting women about their lived experiences of pregnancy and perinatal health services. Over three focus groups, the authors gathered information from 12 participants. Participants were Black women currently pregnant or pregnant in the last year, ages 22-37years old. Participants shared their experiences and views on racial disparities within perinatal health care. Our analytic goal was to explore the questions: "What are Black women talking about in relation to perinatal health"; "Where do Black women get information about perinatal health disparities?"; and "How do Black women feel when they hear or talk about perinatal health risks?". In general, participants felt that the burden to understand their pregnancy risks and options was theirs alone to carry. This resulted in their utilization of and reliance on the internet, social supports, and holistic providers such as doulas for information about how to reduce their risk for maternal morbidity and mortality. Results demonstrate patients' receptivity to frank conversation about perinatal health disparities, and their willingness to partner with their providers to reduce risks in pregnancy. While interventions to reduce perinatal health risks must be systemic, they cannot move forward without including the voices of and partnering with the community they hope to positively impact.

Qualitative study on health self-management of patients with metabolic syndrome among bereaved population after earthquake

The study explore the influencing factors and healthy self-management of MS patients with bereaved relatives after Wenchuan and Yushu Earthquake of their real life; explore difficulties and challenges in the process of self-management; and supply information that could not be sought in quantitative studies. Purposive sampling was used to recruit 36 MS patients who are bereavement population in two earthquakes, and those patients met the inclusion criteria for semi-structured focus group interview. The Nvivo11 software was used to collate and analyze the transcribed data. The main influencing factors of health self-management behavior for MS patients are as follows: the degree of understanding of disease prevention knowledge, emotion management induced by earthquake trauma, the source of disease-related information, access and identification are very limited; ethnic traditional culture, religious beliefs, and production activities and routines before and after the earthquake is an important factor in their healthy self-management behavior. The lack of health beliefs and self-efficacy of MS patients among bereaved families after Wenchuan and Yushu earthquake are key obstacle in their self-management. The overall level of the knowledge of patients’ MS prevention, self-efficacy and self-management behaviors are still low. Some positive factors that can be changed including MS prevention knowledge, self-efficacy, social support, and family function. Some negative factors which can be improved afterwards, including negative coping style, traumatic life experiences from earthquake and smoking.

Interview with Werner Bonefeld: Open Marxism and the Critique of Society

Werner Bonefeld is Emeritus Professor in the Department of Politics at the University of York, UK, and Adjunct Professor at the Postgraduate School ZRC SAZU (Ljubljana, Slovenia). He has published on topics as varied as the development of the British state during the 1980s and 1990s, Europe’s monetary union, ordoliberalism, and Marx’s critique of political economy. A ground-breaking critical theorist, Bonefeld’s contribution to an ‘open’ Marxism developed a rigorous critique of capitalist social relations without omitting the significant themes of lived experience and class antagonism. The following interview marks the publication of a recent monograph titled A Critical Theory of Economic Compulsion: Wealth, Suffering, Negation. Bonefeld discusses his reading of Frankfurt School critical theory and its relation to heterodox and open Marxist social theory with Alex Alvarez Taylor, whose research focuses on early critical theory.

Partners in progress: Advancing dementia research through collaboration.

The lived experience of dementia, the views of the caregiver, and the pursuit of scientific understanding by researchers need to converge for holistic and collaborative action to improve dementia research. However, there often exist silos and division between these groups, which limits relevance and innovation. This paper aims to bridge this divide by offering a tripartite exploration of dementia research through three distinct, yet interconnected, lenses of a person living with the disease, their dedicated carer, and a researcher actively engaged in dementia research. This collaborative endeavour highlights the need to move beyond the traditional (and outdated) dichotomy of "subject and expert". By weaving together personal perspectives and insights in a multi-voiced approach, we highlight the opportunities and potential that can emerge from working in partnership and using a relational approach.

Homelessness During the Pandemic: The Use of Arts to Mobilize Knowledge

The following is a review of three arts-based research projects developed to mobilize knowledge in understandable ways for diverse populations regarding the stories of people who are homeless. All three projects were carried out in Canada – each with a different focus. The first research project created a film – Walking Through Wonderland (2010) - that captured the daily lived experiences of many street youths, such as being unable to find places to sleep, as well as not having food, or access to health care and social services, particularly for mental health care. Additionally, the film highlighted that many youths had become homeless because of major family trauma. The second research project created a Book of Images (2018) that visually portrayed the stories regarding housing stability among young people – in Halifax, Nova Scotia, and Toronto, Ontario – who had previously experienced homelessness. The third research project created an arts-based film production, Homelessness During the Pandemic (2022), with visual images and classical, almost haunting, music for the background to illustrate the experiences of homelessness during the coronavirus disease of 2019 (COVID-19) in two communities of Nova Scotia –Cape Breton Regional Municipality (CBRM) and Halifax Regional Municipality (HRM).

Lyrics of longing: Exploring the role of music in the lived experience of homesickness among college students

The study investigates the multifaceted role of music during homesickness among first-year college students in India. As compared to other mental health outcomes, homesickness is a relatively understudied phenomenon, yet noteworthy due to its direct association with depression and anxiety. Although empirical evidence about music highlights its therapeutic potential for managing stress and anxiety, few studies have explored its role in connection with homesickness. The data for this study were collected through semi-structured interviews with 10 students about their perception of using music during homesickness. Through interpretative phenomenological analysis, the emerging themes pointed to a mixed influence, highlighting the bittersweet nature of music during homesickness. While music validates feelings and boosts confidence and motivation, it also triggers restorative nostalgia and serves as an escape from confronting homesickness. Moreover, native songs fostered an appreciation for one’s culture and helped students connect with their roots. The study contributes to understanding how music is a versatile tool for students dealing with homesickness, offering solace and potential challenges. It serves as a guide to future intervention studies that could explore music’s long-term influences. Recognising the diverse ways students perceive and respond to music provides valuable insights for developing tailored interventions and support systems.

Comparative effects of drug interventions for the acute management of migraine episodes in adults: systematic review and network meta-analysis

ObjectiveTo compare all licensed drug interventions as oral monotherapy for the acute treatment of migraine episodes in adults.DesignSystematic review and network meta-analysis.Data sourcesCochrane Central Register of Controlled Trials, Medline, Embase,...

Algorithmic Impact Assessments at Scale: Practitioners’ Challenges and Needs

Algorithmic Impact Assessments (AIAs) are often suggested as a tool to help identify and evaluate actual and potential harms of algorithmic systems. While the existing literature on AIAs provides a valuable foundation, critical understanding gaps remain, including the lived experiences of practitioners who implement assessments and a lack of standardization across industry. Such gaps pose significant risks to the usefulness of assessments in the responsible development of algorithmic systems. By conducting 107 assessments with practitioners who build personalization, recommendation, and subscription systems at a large online audio-streaming platform and 8 semi-structured stakeholder interviews, we attempt to bridge this gap by identifying practitioners’ challenges when applying AIAs that might hinder their effectiveness. The paper analyzes whether harms described in the literature related to machine learning and recommendation systems are similar to the concerns practitioners have. We find that the challenges practitioners encounter can be grouped into three categories: technical and methods, infrastructure and operations, and resourcing and prioritization. We also describe ways for teams to more effectively mitigate concerns. This paper helps bridge gaps between the theory and practice of AIAs, advances understanding of the potential harms of algorithmic systems, and informs assessment practices to serve their intended purpose.

Woman: Concept, Prototype and Stereotype

ABSTRACT Drawing on previous work, I argue that a family resemblance account of the concept woman has several beneficial consequences. Namely, it promotes hermeneutical justice, and, in time, it may serve to change the prototypes and stereotypes people tend unreflectively to associate with woman. I claim that only at that point will full hermeneutical justice be achieved. To this end, I propose a reconceptualization of the notion of hermeneutical injustice, first presented by Fricker (2007). First, I present the family resemblance account of woman. Accordingly, that concept isn’t identified by a set of necessary and (jointly) sufficient conditions, but, roughly, by different criteria. Second, I show how concepts, prototypes and stereotypes relate to one another and how they may contribute to hermeneutical injustice. Finally, I show how the proposed account of woman may in time foster a change in the associated prototype and stereotypes, which will ameliorate societies by doing more justice to the lived experience of trans women – that is, by promoting full hermeneutical justice.

EXPRESS: Resourcing Hope: Refugee Agentive Consumption Acts in Protracted Displacement

The global refugee crisis presents a complex challenge, with millions experiencing protracted displacement in inhospitable conditions. This study examines the lived experiences of Syrian refugee women in Lebanon, focusing on how they resource hope and maintain well-being amid forced liquidity and uncertainty. Drawing on ethnographic interviews with 26 Syrian refugee women, we uncover the profound effects of changed consumer roles and the critical function of agentive anchoring acts of consumption in resourcing hope. Our findings reveal that refugees employ four types of anchoring acts—domesticity, spirituality, self-care, and socializing—to momentarily restore normalcy, affirm dignity, and enhance well-being. These acts serve as vessels for resourcing and mobilizing hope, allowing refugees to ‘live through’ their present circumstances while aspiring for a better future. We introduce the concept of hope as a social resource that can be collectively shared and mobilized, highlighting the dynamic interplay between hope and hopelessness in refugee experiences. This research contributes to understanding how marketing and service systems can improve refugee well-being in protracted displacement, offering insights for stakeholders to create conditions that foster rather than inhibit subjective well-being among vulnerable consumers experiencing protracted displacement and involuntary liquidity in global modernity to resource hope.