Presenting phenomenology: faithfully recreating the lived experiences of Surfer Girls

BackgroundAs part of the effort to gather research evidence for the development of Vietnam’s National Dementia Plan, a systematic review was conducted to map dementia research in Vietnam or among the Vietnamese diaspora. This paper aimed to report the qualitative research evidence on the life experiences of people with dementia in Vietnam and among the Vietnamese diaspora.MethodSystematic searches were conducted in June 2019 using Medline, Embase, Emcare, PsycINFO and Cochrane electronic databases, as well as grey literature. Keywords and Medical Subject Headings [MeSH terms] for dementia and associated terms were combined with keywords for Vietnam and its provinces. Qualitative research articles published in English or Vietnamese were included to examine evidence on the life experiences of Vietnamese people with dementia using thematic analysis.ResultOur searches resulted in 3,940 papers, from which 21 qualitative research studies were included for final analysis. The majority of research has not been undertaken in Vietnam but with the Vietnamese diaspora in Western countries and has taken a cultural perspective to analyses. Research in Western countries has focused on the need for culturally adapted and culturally sensitive models of care. Emerging themes about the life experiences of Vietnamese people with dementia identified from the studies included: many people do not have diagnostic terms for dementia but use the descriptive language of symptoms; stigma was a reported problem and on occasions can be observed in the descriptive language used for people with dementia; cultural and traditional values create both an opportunity and a barrier, supporting compassion, family care and relaxation, but creating barriers to accessing health services or long‐term residential care.ConclusionThis is the first systematic review reporting evidence on the life experiences of people with dementia in Vietnam and among the Vietnamese diaspora. Future research is needed on the voice of people with dementia themselves and their caregivers particularly in low and middle‐income countries with regards to living with dementia, pathways to care from diagnosis, treatment, care and support, additional social care and preparedness for end of life care for people with dementia.

Background: Specialist healthcare providers internationally face challenges managing elective care waiting lists. There is an increase focus on how we can provide integrated care solutions to achieve active rather than passive waiting. This requires potentially complex interactions across care boundaries and care providers alongside novel digital solutions. Crucially however we must also understand the lived patient experience of people on those waiting lists. Little research has considered the lived experience of people on waiting lists for specialist care.
 Methods: 46,000 individual patients on waiting lists at a major tertiary referral centre in the West Midlands, United Kingdom were sent a survey to understand their experiences of waiting for specialist care whilst remaining in the community context. Patients were contacted via SMS initially with a link to a web-portal with follow up contact via letter for those who did not complete the initial survey. This work is linked to/informed by extensive, commissioned, independent deliberative patient and public involvement work looking at waiting list management previously completed for this organization. This was approved locally as a service evaluation.
 Results: 20,741 responses were received, representing a 45% response rate. 62% of response were received via the website, with 38% via letter. 1,633 patients (7.9%) wished to be removed form the waiting list. 18.5% felt that being on the waiting list was severely stopping them from carrying out normal tasks, 17.7% reported that being on the waiting list was severely impacting their ability to work and 14.0% reported that being on the waiting list severely impacted their ability to care for others. 20.7% felt their condition had got severely worse whilst on the list. Impact of being on the waiting list was most notable for those in the most deprived population groups, with 25% of patients in the most deprived areas having been severely impacted by the wait time, compared with 14% in the least deprived areas. There was additional variation on the impact of waiting based on ethnicity, age and work status.
 Discussion: High healthcare demands result in an inevitability of patients waiting for specialist services. This work demonstrates the diversity of lived experiences for patients on elective care waiting lists, stressing differences between key population groups including those with protected characteristics. Patient cohorts within specialist waiting lists must be seen as diverse and dynamic. Much promised prioritisation and active waiting initiatives must be individualised to meet the diverse needs of the people on the waiting lists and recognise further work is needed to better understand how to engage with these groups.
 Funding received from: West Midlands Academic Health Science Network: Safety Innovation and Improvement Fund

There is more to illuminate about people's experiences of surviving out-of-hospital cardiac arrest (OHCA) and how such an event affects people's lives over time. This study aimed to elucidate meanings of people's lived experiences and changes in everyday life during their first year after surviving OHCA. A qualitative, longitudinal design was used. Eleven people surviving OHCA from northern Sweden agreed to participate and were interviewed 6 and 12 months after the event. A phenomenological hermeneutic interpretation was used to analyse the transcribed texts. The structural analysis resulted in two themes: (i) striving to regain one's usual self and (ii) a second chance at life, and subthemes (ia) testing the body, (ib) pursuing the ordinary life, (ic) gratitude for help to survival, (iia) regaining a sense of security with one's body, (iib) getting to know a new self, and (iic) seeking meaning and establishing a future. To conclude, we suggest that people experienced meanings of surviving OHCA over time as striving to regain their usual self and getting a second chance at life. The event affected them in many ways and resulted in a lot of emotions and many things to think about. Participants experienced back-and-forth emotions, when comparing their present lives to both their lives before cardiac arrest and those lives they planned for the future. During their first year, participants' daily lives were still influenced by 'being dead' and returning to life. As time passed, they wanted to resume their ordinary lives and hoped for continued lives filled with meaning and joyous activities.

Objectives: This paper aimed to review and synthesise the qualitative research evidence on the experiences and perceptions of dementia in Vietnam and among the Vietnamese diaspora. Methods: Systematic searches were conducted in June 2019 using Medline, Embase, Emcare, PsycINFO and Cochrane electronic databases, as well as grey literature. Keywords and Medical Subject Headings [MeSH terms] for dementia and associated terms were combined with keywords for Vietnam and its provinces. Qualitative research articles published in English or Vietnamese were included to examine evidence on the life experiences of Vietnamese people with dementia using thematic analysis. Results: Our searches resulted in 3,940 papers, from which 21 qualitative research studies were included for final analysis. The majority of research has not been undertaken in Vietnam but with the Vietnamese diaspora in Western countries and has taken a cultural perspective to analyses. Research in Western countries has focused on the need for culturally adapted and culturally sensitive models of care. Emerging themes about the life experiences of Vietnamese people with dementia identified from the studies included: many people do not have diagnostic terms for dementia but use the descriptive language of symptoms; stigma was a reported problem and on occasions can be observed in the descriptive language used for people with dementia; cultural and traditional values create both an opportunity and a barrier, supporting compassion, family care and relaxation, but creating barriers to accessing health services or long-term residential care. Conclusions: This is the first systematic review reporting qualitative evidence on the life experiences of people with dementia in Vietnam and among the Vietnamese diaspora. Future research is needed on the voice of people with dementia themselves and their caregivers particularly in Vietnam, and low and middle-income countries with regards to living with dementia, pathways to care from diagnosis, treatment, care and support, additional social care and preparedness for end of life care for people with dementia.

Most reviews of scholarship on the intersections of Christianity and queer sexuality (particularly in Africa) tend to conclude that Christianity and queer sexuality are irreconcilably contradictory. This scholarship is often based on the conviction that Africa is largely heteronormative and homophobic. While a decolonial lens does not erase the actual lived experiences of those who experience sexual and religious dissonance and homophobic violence, it does alert scholars to the nuances and new directions of scholarship in this area.These trends move beyond the “irreconcilable contradiction” to more negotiated living at the intersections of belief and sexuality; to even charting a path to an arguably transformative religiosity. The purpose of this article is to review how the scholarship in this area has developed from the trajectory of the irreconcilable contradiction to the path of transformative religiosity. This article advocates for the importance of studies which focus on the lived experiences of queer religious people in order to highlight issues, practices, people, and theories which do not often take centre stage in the discipline of sociology or theology.This article makes use of queer and decolonial theories in order to analyse literature and to argue for the importance of examining the relationship between the lived experiences of queer people and religion in Africa. Further, it aims to encourage sociologists who study religion, and theologians who study gender, to engage in interdisciplinary and intersectional scholarship and develop more compelling theoretical frameworks, which engage with religion and sexuality as variable social structures through the lived experiences of people in the context of religion.

Objective: Leisure experiences play a significant role in individuals' lives. Accordingly, the current study aimed to determine the impact of physical activity application product features on improving young people's leisure experiences. Methods and Materials: This cross-sectional study was correlational. The research population included all youths in the northern and western areas of Tehran in 2021 who used the physical activity application (Samsung Health) on their mobile phones at least twice a week. The sample consisted of 410 individuals selected through purposive sampling and responded to personal information checklists and researcher-made questionnaires on physical activity application product features and leisure experiences. Data were analyzed using structural equation modeling in SPSS and SMART-PLS software. Findings: Results showed that physical activity application product features and all three of its components, including perceived dynamism, usefulness features, and pleasure-seeking features, had a direct and significant effect on young people's leisure experiences (P<0.05). Conclusion: The results indicate the effective role of physical activity application product features and all three of its components, including perceived dynamism, usefulness features, and pleasure-seeking features, in improving young people's leisure experiences.

PurposeIn recent years, South Africa has continued to experience a high rate of young people who are not in employment, education, or training (NEET). The emergence of the concept ‘NEET’ affords researchers an opportunity to more closely examine the life situations and experiences of this population sub-group. The purpose of this paper is thus to further explore the life situations and lived experiences of people in South Africa who are NEET. Structuration theory is adopted to better understand how social structures play a role in the lives of people who are NEET.Design/methodology/approachSemi-structured interviews were carried out with 24 NEET people over a period of two months in South Africa. This paper presents a section of the findings from a broader study that used self-administered interviews to collect data in three metropolitan municipalities of Gauteng Province, the economic heartland of South Africa.FindingsThe findings indicate that poverty remains an obstacle for many young people in furthering their studies or developing their ideas into businesses. Also evident is that there are NEETs who are taking action to disconnect from the NEET sub-group by means of seeking work, funding, or volunteering for initiatives, among other activities. Lack of financial support affects most NEETs perpetuating their vulnerability and their efforts to detach themselves from their NEET status. It is evident that most NEETs who took part in this study are still seeking opportunities to become economically active, regardless of their current financial situations.Originality/valueThere remains a lack of adequate exploration and understanding of the experiences and life situations of people who are NEET. The relevance of this study is in its contribution towards extending the applicability of structuration theory to understanding the life situations of people who are NEET in South Africa. This study contributes to the literature by providing the experiences and life situations of people who are NEET in a country with already high levels of inequalities. It is hoped that this study may provide the basis for developing more specific policy solutions able to address the NEET issues in South Africa and in society more generally.

BackgroundBack pain is common and costly, with negative impacts on both individuals and the health care system. Rural, remote, and Indigenous populations are at greater risk of experiencing back pain compared to urban and non-Indigenous populations. Potential barriers to health care access among Canadians with chronic back pain (CBP) have been identified; however, no study has used lived experiences of people with CBP to drive the selection, analysis, and interpretation of variables most meaningful to patients.ObjectiveThe aims of this study are to (1) engage with rural, remote, and urban Indigenous and non-Indigenous patients, health care providers, and health system decision makers to explore lived experiences among people with CBP in Saskatchewan, Canada; (2) cocreate meaningful indicators of CBP care access and effectiveness; and (3) identify program and policy recommendations to overcome access barriers to CBP care.MethodsIn phase 1, one-on-one interviews with 30 people with current or past CBP and 10 health care providers residing or practicing in rural, remote, or urban Saskatchewan communities will be conducted. We will recruit Indigenous (n=10) and non-Indigenous (n=20) rural, remote, and urban people. In phase 2, findings from the interviews will inform development of a population-based telephone survey focused on access to health care barriers and facilitators among rural, remote, and urban people; this survey will be administered to 383 residents with CBP across Saskatchewan. In phase 3, phase 1 and 2 findings will be presented to provincial and national policy makers; health system decision makers; health care providers; rural, remote, and urban people with CBP and their communities; and other knowledge users at an interactive end-of-project knowledge translation event. A World Café method will facilitate interactive dialogue designed to catalyze future patient-oriented research and pathways to improve access to CBP care. Patient engagement will be conducted, wherein people with lived experience of CBP, including Indigenous and non-Indigenous people from rural, remote, and urban communities (ie, patient partners), are equal members of the research team. Patient partners are engaged throughout the research process, providing unique knowledge to ensure more comprehensive collection of data while shaping culturally appropriate messages and methods of sharing findings to knowledge users.ResultsParticipant recruitment began in January 2021. Phase 1 interviews occurred between January 2021 and September 2022. Phase 2 phone survey was administered in May 2022. Final results are anticipated in late 2022.ConclusionsThis study will privilege patient experiences to better understand current health care use and potential access challenges and facilitators among rural, remote, and urban people with CBP in Saskatchewan. We aim to inform the development of comprehensive measures that will be sensitive to geographical location and relevant to culturally diverse people with CBP, ultimately leading to enhanced access to more patient-centered care for CBP.International Registered Report Identifier (IRRID)DERR1-10.2196/42484

Relative poverty, a concept developed by left-wing social scientists, categorises as ‘poor’ those who fall seriously behind normal nationwide material standards. This article argues that the widespread view that the word ‘poverty’ means ‘relative poverty’, which in left-dominated social policy academia often extends to implying that those who do not define poverty this way are necessarily misguided, has led to an incomplete portrayal of poorer British people's lived experience. The article examines published empirical work, before presenting findings from British Social Attitudes surveys and interviews with forty unemployed Jobseeker's Allowance claimants and thirty employed people. Both the existing and new findings exposed aspects of public attitudes and experience which resonate with unanswered academic criticisms of defining poverty as relative poverty. These public contributions have tended to be glossed over or treated dismissively by social policy authors, despite them attaching importance to Left-friendly aspects of poorer people's experience and attitudes.

For more than a hundred years, voice hearing has been treated as a symptom of serious mental illnesses with biological origins. Pharmaceutical companies have expanded the range of products targeted at treating these illnesses and the diagnosis of schizophrenia now underpins a multi-billion dollar, world-wide business. Throughout the western world, nation states have vested an authority in psychiatry to compulsorily treat people who meet a set of diagnostic criteria that is widely discredited. There is considerable evidence that more effective ways of responding to people experiencing psychosis can be provided without coercion. These approaches differ in essence to traditional Kraepelinian psychiatry in that they acknowledge the role of people's life experiences in creating the problems they face, and the professionals work in partnership with the service users. The approaches recognise that people have histories which often include considerable trauma and social workers are in an ideal position to work with voice hearers to help them understand their experiences and to develop ways of coping. The authority vested in psychiatry is not static and within Europe mental health professionals can contribute to changing what is meant by ‘unsound mind’ and extending the right of liberty to voice hearers. In doing this, social workers can ensure that they do not compound the trauma by devaluing and discrediting people's experience.

This essay explores the multiple ways in which the nexuses between water scarcity and climate change are socially and historically grounded in ordinary people's lived experiences and are embedded in specific fields of power. Here we specifically delineate four critical dimensions in which the water crises confronting the African continent in an age of climate change are clearly expressed: the increasing scarcity, privatization, and commodification of water in urban centers; the impact of large dams on the countryside; the health consequences of water shortages and how they, in turn, affect other aspects of people's experiences, sociopolitical dynamics, and well-being, broadly conceived; and water governance and the politics of water at the local, national, and transnational levels. These overarching themes form the collective basis for the host of essays in this volume that provide rich accounts of conflicts and struggles over water use and how these tensions have been mitigated.

This paper provides an in-depth knowledge on the social practices of an under-researched ethnic group in the UK, the British Yemenis. Through an exploration of their lived activities in the context of the conduct of everyday life, this study uses photo-novella and semi-structured interviews in combination, to present five main themes which emerged from the study. These are body image, food, home, language, and religion. The paper shows how British Yemeni young people connect and disconnect, at different levels, times, and context, with mainstream British cultures and Yemeni subcultures, displaying elements of cultural hybridity that are unique to these individuals, yet at the same time provides some information on the Yemeni community. The study follows the daily activities of six British Yemeni young people in a longitudinal manner, exploring an understanding of how social structures and cultures have, and are continuously, impacting the young people's conduct of everyday life. The study also contributes to the use of intersectionality and post-colonialism as analytic tools in the study of young people's lived experiences.

There is a paucity of qualitative literature investigating people's experiences of food and nutrition after treatment for cancer. The present study aimed to explore people's relationships with food and nutrition throughout their colorectal cancer journey. In-depth semi-structured interviews were conducted with 25 participants who had undergone surgery for colorectal cancer. The study design was informed by principles of phenomenology. Data were collected then transcribed and analysed using an inductive coding process and a thematic analysis to allow the themes to highlight people's lived experiences. Data enabled five primary themes to be drawn including: 'appetite swings', 'emotions on a changing physicality', 'the medicalisation of food', 'taking control of symptom management' and a cross-cutting theme 'drivers and vehicles for action'. Feelings and emotions described by participants around their relationship with food and nutritional status often guided decisions on what was eaten more than objective nutritional measure or dietary advice. Participants used weight changes, appetite and food as barometers to measure their overall recovery. Food was an area over which people exhibited control of their lives and they could quantify, in measurable units, their overall well-being and rehabilitation. They did this either by using the currency of body weight in pounds or the size of portions eaten. Appetite, weight and symptoms influenced dietary intake substantially and were poignant issues affecting people's lives. The relationship people have with food determines their eating habits and an understanding of the essences and nuances of their experiences is essential to enable the delivery of patient-centred care.

How has recent AI Ethics literature addressed topics such as fairness and justice in the context of continued social and structural power asymmetries? We trace both the historical roots and current landmark work that have been shaping the field and categorize these works under three broad umbrellas: (i) those grounded in Western canonical philosophy, (ii) mathematical and statistical methods, and (iii) those emerging from critical data/algorithm/information studies. We also survey the field and explore emerging trends by examining the rapidly growing body of literature that falls under the broad umbrella of AI Ethics. To that end, we read and annotated peer-reviewed papers published over the past four years in two premier conferences: FAccT and AIES. We organize the literature based on an annotation scheme we developed according to three main dimensions: whether the paper deals with concrete applications, use-cases, and/or people's lived experience; to what extent it addresses harmed, threatened, or otherwise marginalized groups; and if so, whether it explicitly names such groups. We note that although the goals of the majority of FAccT and AIES papers were often commendable, their consideration of the negative impacts of AI on traditionally marginalized groups remained shallow. Taken together, our conceptual analysis and the data from annotated papers indicate that the field would benefit from an increased focus on ethical analysis grounded in concrete use-cases, people's experiences, and applications as well as from approaches that are sensitive to structural and historical power asymmetries.

abstractThere are stories that many people who have experienced a traumatic and oppressive past carry with them, stories that continue to remain untold. In a country such as South Africa, where ‘empowerment’ and ‘equality’ are the order of the day, it becomes crucial to acknowledge people's lived experiences and how these relate to the changes taking place. Drawing from an empirical study I conducted in Gauteng, South Africa, this article interrogates how Black women's private memories of the conflict/apartheid period influence how they make sense of their new-found freedom. It explores how these women use artistic forms such as embroideries to re-stitch their lives, create personal life stories, and make connections between the past and the present.I highlight how the women's narratives demonstrate the importance of acknowledging the intersection of gender, history, and politics when talking about people's experiences. I point to the significance of revisiting history in order to make sense of the present, and show how freedom should be understood within its historical context. The interweaving of the women's experiences highlights the collectiveness of suffering, and their narratives may be perceived as echoes of both collective and individual suffering, and healing. The embroideries they produced externalise their embodied experience, and allow for the weaving in of multiple life experiences. I conclude by discussing how through creating personal embroideries the women draw attention to the inequalities they continuously have to contend with in their everyday lives.