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The field of sport, exercise, and physical education studies continues to utilize and strives to enhance rigor in qualitative approaches. We build upon this work by narrowing a focus to appropriately applying rigorous discourse analysis (DA). Though variations of DA have been increasingly incorporated into sport, exercise, and physical education studies, a comprehensive overview specifically covering which methods underpin DA and which analytical strategies are adopted is missing. Therefore, we conducted a structured scoping review by identifying 1810 papers from journal and database searches from 2000 to April 2022, then narrowed the sample to 560 papers that specifically conducted a DA. The review focuses on studies and practices within Foucauldian Discourse Analysis, Critical Discourse Analysis, and Discursive Psychology. By adopting a problematizing approach, we critically question taken-for-granted practices of DA, and through our synthesis, we argue that uses of DA tend to be organized around three archetypes: as a method detached from theoretical origin, as a lens with less emphasis on methodological description by primarily utilizing theory to contextualize and interpret insights, and as a path where theory and methods overlap with appropriate methodological descriptions focusing on textual analysis. [ABSTRACT FROM AUTHOR]

Introduction: Two ethical challenges of nursing home nurses during the COVID-19 pandemic in Sweden are discussed in this paper. Background: Historically, the nurse's primary concern is for the person who is ill, which is the core of nurses' moral responsibility and identity. In Sweden, person-centered care is generally deemed important in nursing older nursing home residents. Objective: To chart moral responsibilities of nursing home nurses in two cases involving older residents during the COVID-19 pandemic in Sweden. Methods: We used Margaret Urban Walker's framework for moral responsibilities and the International Council of Nurses (ICN) code of ethics for nurses (2021) for our normative analysis. Ethical considerations: Written and verbal consent was obtained before the interviews, and information was given that participation was entirely voluntary and possible to cancel at any time before the work was published. The Swedish Ethical Review Agency gave an advisory opinion stating that there were no ethical objections to this research project (Dnr. 2020-05649). Findings: Case #1: a palliative older nursing home resident who was coercively tested for COVID-19, and case #2: a COVID-19–infected resident with dementia who was isolated using sedation. The decision that was finally made in the respective case was analyzed in the light of either consequentialist/utilitarian or non-consequentialist/deontological reasons. Discussion: Empowerment of nurses as moral agents is required for the application of practical wisdom in the balancing of different care relationships (responsibilities), moral identities (professional virtues), and competing moral values. This requires resources and opens possibilities for profound ethical reflection in nursing education and at work. Conclusion: During the COVID-19 pandemic, the moral and professional responsibility of nursing home nurses to deliver person-centered care was sometimes problematically abandoned in favor of a more utilitarian manner of ethical decision-making. [ABSTRACT FROM AUTHOR]

Background: Adolescent girls face numerous challenges which hinder their ability to manage menstruation in a healthy and dignified manner. Objectives: To examine the menstrual hygiene practices of adolescent girls schooling in rural Anambra communities. Study design: Cross-sectional descriptive study. Method: Participants were selected using multistage stratified random sampling technique and interviewed using self-administered semi-structured questionnaire. Data were analysed using Statistical Package for Social Sciences version 22.0. Results: Mean age of all, pre-menarche and post-menarche girls were 14.7 ± 1.84, 12.8 ± 1.09 and 15.1 ± 1.73 years, respectively. About 46% of the pre-menarche girls had not received any information on menstruation. Common sources of initial menstruation information were mother (87.3%), school (52.2%) and peers (20.0%). Among the 1091 (85.0% (1091/1283)) post-menarche girls, last menstrual period, last menstrual period duration and cycle length could not be recalled by 53.9%, 34.4% and 39.3%, respectively. Majority (98.3%) who could recall last menstrual period had a cycle length of ⩽30 days and the mean duration of menses was 4.4 ± 0.84 days. Disposable sanitary pad was mostly (60%) cited as recommended product, but cloth/rags (40.6%) or tissue paper (32. 3%) were predominantly used. Majority (88.6%) took their bath ⩾twice/day, 50.9% changed sanitary product ⩽twice/day while 72.5% exhibited poor hand washing. Sanitary products were mostly discarded by burning (45.4%). Fifty-one percent could not change in school predominantly due to lack of functional toilets/changing rooms (84.2%) while 72.5% of those who changed did so in bushes or unused spaces. Challenges faced during menstruation include restriction from holy places (38.9%), waist pain (74.9%), blood stains (36.1%) and lack of money to buy pad (27.0%). Factors significantly associated with using commercial pads were age (p = 0.047), class (p = 0.006), mother's educational status (p < 0.001), social class (p < 0.001), ability to recall last menstrual period date (p = 0.029) or duration (p = 0.001). Conclusion: Menstrual hygiene management was unsatisfactory among studied adolescents. Continuous education of adolescent girls on menstrual hygiene management and advocacy for adequate menstrual hygiene management support are imperative. [ABSTRACT FROM AUTHOR]

Purpose: This paper compares two iterations (in-person and online) of a multi-stage continuing education program for improving high-risk decision-making among mental health workers. Methods: The mixed-methods study analyzed the following: (1) physiological and psychological arousal during simulated patient interviews; (2) physiological and psychological arousal recorded during real-time decision-making over four months; and (3) thoughts on the process and outcomes of the intervention raised in reflective interviews. Findings: Quantitatively, there were no statistical differences in stress measures between in-person and online simulated interviews or decision-making logs, suggesting they were effective in eliciting reactions commonly found in challenging clinical situations. Qualitatively, participants in both iterations indicated that the intervention caused them to reflect on practice, consider a wider range of factors related to the decisions, and enact approaches to improve decision-making. Conclusions: A carefully constructed online continuing education experience can result in outcomes for experienced social workers that are equivalent to an in-person iteration. [ABSTRACT FROM AUTHOR]

Introduction: Throughout the COVID-19 pandemic, primary care nurses were often redeployed to areas outside of primary care to mitigate staffing shortages. Despite this, there is a scarcity of literature describing their perceptions of and experiences with redeployment during the pandemic. Objectives: This paper aims to: 1) describe the perspectives of primary care nurses with respect to redeployment, 2) discuss the opportunities/challenges associated with redeployment of primary care nurses, and 3) examine the nature (e.g., settings, activities) of redeployment by primary care nurses during the COVID-19 pandemic. Methods: In this qualitative study, semi-structured interviews were conducted with primary care nurses (i.e., Nurse Practitioners, Registered Nurses, and Licensed/Registered Practical Nurses), from four regions in Canada. These include the Interior, Island, and Vancouver Coastal Health regions in British Columbia; Ontario Health West region in Ontario; the province of Nova Scotia; and the province of Newfoundland and Labrador. Data related to redeployment were analyzed thematically. Results: Three overarching themes related to redeployment during the COVID-19 pandemic were identified: (1) Call to redeployment, (2) Redeployment as an opportunity/challenge, and (3) Scope of practice during redeployment. Primary care nurses across all regulatory designations reported variation in the process of redeployment within their jurisdiction (e.g., communication, policies/legislation), different opportunities and challenges that resulted from redeployment (e.g., scheduling flexibility, workload implications), and scope of practice implications (e.g., perceived threat to nursing license). The majority of nurses discussed experiences with redeployment being voluntary in nature, rather than mandated. Conclusions: Redeployment is a useful workforce strategy during public health emergencies; however, it requires a structured process and a decision-making approach that explicitly involves healthcare providers affected by redeployment. Primary care nurses ought only to be redeployed after other options are considered and arrangements made for the care of patients in their original practice area. [ABSTRACT FROM AUTHOR]

Engaging in 'reflexive practice' throughout the research process (Benson and O'Reilly, 2022) and a 'reflexivity of discomfort' (Hamdan, 2009) through an intersectional lens, this article presents a reflective account of accessing and conducting observations and interviews at a South Asian women's organisation, in North England, to explore Pakistani and Bangladeshi Muslim (PBM) lone motherhood. It critically explores how researchers' own subjectivities and intersecting identities – in this case, my intersecting identities and positionalities as a young British Pakistani Muslim women, researcher and volunteer – impact interactions in different circumstances with different groups of participants and the importance of having continuous critical self-awareness. Moving beyond simplistic insider–outsider debates, the paper contributes towards further developing reflexivity debates taking an 'intersectional reflexivity' approach. It argues for thinking about the research process and engagements in the field as socially constructed, changing, adapting and negotiated overtime and to utilise intersectionality to unpick broader categories. Finally, it encourages researchers to adopt reflexivity in their research practices. [ABSTRACT FROM AUTHOR]

Death and dying are woven throughout the work of home care aides, and yet the care they provide at the end of life (EOL) remains poorly understood. This is due in part to the multiple circumstances under which aides provide EOL care. In this paper, we elucidate the EOL care experiences of aides working in home care agencies in New York City. We conducted in-depth interviews with 29 home care aides, and we analyzed these data using inductive, team-based methods. Our findings show that aides may not be aware of or accept a client's EOL status, and they may avoid EOL care. These conditions shape EOL care, and we detail the committed forms of care aides provide when they are aware and accepting. We recommend improved training, support systems, and policy change to enhance aides' contributions to EOL care, while protecting aides' health and well-being. [ABSTRACT FROM AUTHOR]

In 2020–2021, a qualitative study was undertaken using an interpretive description methodology to identify what triggers grief in the first 2 years following the death of a beloved family member, and to gain other helpful insights about grief triggers from bereaved Canadian adult volunteers. In that study, a purposive sampling method was used to select 10 bereaved Canadian adult volunteers for in-depth, semi-structured interviews. This paper reports on the humor findings, as revealed to be a particularly complex grief trigger for many participants, as well as a periodic way for most to manage or live with their grief. Participant quotes and an extended discussion are included to illustrate the importance of these humor findings in relation to grief, and to inform bereaved people, bereavement service providers, and the general public about both helpful aspects and some cautionary considerations about humor. [ABSTRACT FROM AUTHOR]

Adverse maternal and infant health outcomes among African Americans are increasingly recognized as indicators of a critical public health crisis in the United States. Research has found that stress is related to structural racism and the social determinants of health (SDOH) that cause avoidable, unfair inequities in resources, education, power, and opportunities across ethnic groups. This paper describes the SDOH needs and experiences of pregnant Black women from the perspective of doulas and Birthing Beautiful Communities (BBC) clients. The design was a qualitative description, using data collected over time (2017–2018, 2020–2021, and 2023). This study took place in Cleveland and Akron, Ohio and the sample included 58 clients, 26 doulas, and 2 resource intake specialist assistants (RISAs). Qualitative data included individual client interviews, three doula focus groups, and one interview with two BBC RISAs. Three coders used content analysis to deductively identify SDOHs and calculate the number of interviews that contained information about specific SDOHs. Although the sample reported issues with all SDOH, particular ones caused a cascade of SDOH effects. Transportation issues, for example, impeded women from being able to make it to work, doctor's appointments, and to purchase essential baby items (e.g., food, infant supplies). An inability to work—whether because of transportation challenges or pregnancy-related health complications—led to unstable housing and an inability to deal with transportation challenges. Many clients mentioned that housing was a major issue, with many clients experiencing housing instability. Implications include ensuring SDOH information is collected from a trusted source who can advocate and ensure access to a wide range of local resources, ensuring policies protect pregnant women from experiencing a cascade of SDOH that may contribute to continuing health disparate infant and maternal health outcomes in African American women. [ABSTRACT FROM AUTHOR]

Patient-reported outcome measures (PROMs) play a central role in clinical research and patient care resulting in a plethora of standardized PROMs to measure a range of constructs, including disease symptoms, health-related quality of life, and health status (Meadows/Reaney) used in a range of settings, including the nursing environment. However, the use of PROMs in drug development and their use in healthcare evaluation do not easily marry together. In drug development, standardization of measurement is key to the interpretation of the formation at a population level with minimal biases. However, in health care, the individual patient perspective, priority, and needs should be taken into account whereas, in the clinical encounter, one has to also deal with what is particular and unique. The purpose of this paper is to describe the characteristics of the phenomenological method as a means within a mixed-method framework, to supplement participants' patient-reported outcome numeric scores with a more in-depth commentary on the essence of the lived health experiences. [ABSTRACT FROM AUTHOR]

In the past 20 years, divorce has increased in Indonesia. Indonesian statistics show that divorces initiated by women exceed those by men. One issue that is often neglected is how socioeconomic differences also play a role in this matter. Drawing on our collaborative research on Muslim divorces in Indonesia, this paper focuses on the interplay between divorce strategies and socioeconomic differences among Muslim couples. Our in-depth interviews with 93 Muslim men and women and 19 judges from Islamic courts show that class differences shape distinctive dynamics of divorce among Muslim Indonesians. Couples from less educated, lower-income backgrounds accept marriage dissolution more easily, with women becoming much less tolerant of men's behaviors such as infliction of domestic violence, infidelity, and failure to provide financial support. Educated, middle-class urban couples divorce for similar reasons but tend to experience a lengthier process accompanied by complex layers of conflict. Many educated women's narratives emphasize their ability to support themselves through working, and a desire to be free of a bad marriage at any cost. Class and education thus contribute to significant differences in the experience and trajectories of divorce in Indonesia. [ABSTRACT FROM AUTHOR]

Summary: Results of our previous research indicated that older adults believe that there's a lack of sufficient social support from informal sources available to them in difficult situations they face. In follow-up research, we found that older adults defined limitation in their self-sufficiency in daily activities to be the most significant difficult situation for them. This paper disseminates the results of the research seeking to answer the research question: According to older adults, can family be a source of social support in a difficult situation of limitation of self-sufficiency in daily activities? Social support theory is the used theoretical basis. Using the method of qualitative content analysis we analysed 23 semi-structured interviews with older adults. Findings: We found that if two conditions, that is, geographic proximity to individual family members and the quality of relationships with family members, are ensured, family can function as one of the informal sources of social support according to older adults. In case that older adults prefer a formal source of social support, they consider their family as a source of social support only in an extreme situation of limited self-sufficiency. Applications: This study provides social workers with a better understanding of the difficult situations of older adults and what kind of social support older adults prefer. This study also provides an argumentation about the importance of gerontological social work. [ABSTRACT FROM AUTHOR]

This paper develops and applies a methodology of qualitative inquiry that equips researchers to capture how social actors produce and contest accepted forms of knowledge at the margins of mainstream globalizing discourses in times of crisis. Standing at the intersection between conceptual and empirical research, our methodology builds on the common epistemological premises of 'narrative', as stories constructed and enacted in social life, and 'practice', as tasks and projects composed by 'doings' and 'sayings'. Overcoming the dualism between 'action' and 'discourse' in traditional social theory, this methodology integrates narrative theory and practice theory into a joint framework for fieldwork and interviews. The use of the narrative-practice methodology in ethnographic case studies – such as interpreters' experience of the COVID-19 pandemic in Qatar – allows researchers to gain analytical granularity on participants' storied practice and practiced stories of the crisis, to harness 'peripheral' knowledge and refashion public discourse. [ABSTRACT FROM AUTHOR]

Researchers are increasingly interested in why people want to participate in qualitative interview studies, particularly what they hope to gain from participating. The present paper contributes to this research agenda by analysing the motivations of victims of interpersonal violence: a group that is considered ethically challenging to involve in research, given their history of being intruded upon. The analysis is based on 174 qualitative interviews from three separate studies: two on intimate partner violence and one on sexual assault. A key finding is that many victims welcome the opportunity to participate and often use the interviews for their own purposes. We identified three different 'participant orientations', or ways victims relate to the interview and the research, including 'telling for oneself', 'telling for others' and 'telling for the researcher'. We discuss how these orientations imply different ethical contracts between the participant and researcher and their links to recruitment methods. [ABSTRACT FROM AUTHOR]

Introduction: Reminiscence therapy (RT), which engages individuals to evoke positive memories, has been shown to be effective in improving psychological well-being in older adults suffering from PTSD, depression, and anxiety. However, its impact on brain function has yet to be determined. This paper presents functional magnetic resonance imaging (fMRI) data to describe changes in autobiographical memory networks (AMN) in community-dwelling older adults. Methods: This pilot study used a within-subject design to measure changes in AMN activation in 11 older adults who underwent 6 weeks of RT. In the scanner, participants retrieved autobiographical memories which were either recent or remote, rehearsed or unrehearsed. Participants also underwent a clinical interview to assess changes in memory, quality of life, mental health, and affect. Findings: Compared to pretreatment, anxiety decreased (z = −2.014, p =.040) and activated significant areas within the AMN, including bilateral medial prefrontal cortex, left precuneus, right occipital cortex, and left anterior hippocampus. Conclusion: Although RT had subtle effects on psychological function in this sample with no evidence of impairments, including depression at baseline, the fMRI data support current thinking of the effect RT has on the AMN. Increased activation of right posterior hippocampus following RT is compatible with the Multiple Trace Theory Theory (Nadel & Moscovitch, 1997). [ABSTRACT FROM AUTHOR]

The current paper describes the author's experience conducting virtual interviews with sexual assault survivors and their informal supports (e.g., family, friend, partner) during the COVID-19 pandemic, drawing on past and present interviewing experiences with this population, and the recent literature on best practices for virtual interviewing and survivor/trauma-informed research methods. The experience of pivoting from past projects using face-to-face interview methods to doing virtual interviews with this population is presented and critically analyzed. Potential advantages and drawbacks of various methods and adaptations for doing virtual interviews in a dyadic sample of survivors and their informal supports are described to facilitate future research using virtual methods with sexual assault survivors and their informal supporters. Issues related to access (e.g., e.g., age, gender, race, ability, poverty) to interview participation are also noted as in need of more consideration. Finally, the impact on interviewers of doing this work in virtual versus face-to-face contexts is discussed. [ABSTRACT FROM AUTHOR]

Background: Experiences of living with and seeking care for multimorbidity is a relatively under-researched field. By analysing experiences of people with multimorbidity, caregivers and care professionals, we can better understand the complex care needs of those with multimorbidity and identify improvements to care management. This paper reports findings from research that elicited the views of key stakeholders to inform future care practice and policy. Aim: To elicit care recipient and care provider views to understand the care needs of those living with and seeking care for multimorbidity. Method: A qualitative interview study using purposive sampling of those living with and providing care in multimorbidity. Results: Increased support to those with multimorbidity and caregivers to navigate care systems was advocated. Establishing trusting care relationships featured prominently in participants accounts. Fragmented care, inadequate coordination and poor communication between care providers, were identified as system-wide challenges. There was agreement that integrated care models were needed, which delivered personalised care, such as shared decision-making, choice in care options and accessing services, and individualised care plans. Conclusion: We found significant agreement among stakeholders on care need and management in multimorbidity. Understanding the experiences of those with multimorbidity, caregivers and care professionals, can inform future improvements in care management. [ABSTRACT FROM AUTHOR]

The Covid-19 pandemic added to collective concerns, making health risks salient especially for the older population. The health emergency exacerbated an already widespread negative representation of aging, and phenomena such as ageism. With the present qualitative inquiry, 21 episodic interviews were collected with the aim of understanding the experience of older adults in residential care facilities, exploring their ideas of aging and the viewpoints that helped them to respond to the pandemic successfully. A thematic analysis was conducted using NudIst software. The results show that participants described multiple personal and relational resources they used to cope with the pandemic, and they were able to express counter-narratives to the ideas of aging as coinciding with decline, and of lockdown as a source of distress alone. The paper concludes with reflections on the relevance of research capable of challenging unhelpful dominant discourses and averting the risk of them turning into negative prophecies. [ABSTRACT FROM AUTHOR]

This paper aims to estimate the prevalence of client-perpetrated violence against female sex workers (FSWs) in Bogotá and to understand what structural and environmental factors are associated with such victimization. The project used secondary data from interviews with 2,684 FSWs. Multivariable binary logistic regression was used to test for associations with client-perpetrated violence. Findings reveal that factors such as experiencing police harassment and social stigma were positively associated with client-perpetrated violence. Situational factors such as providing services in motels, hotels, on the street, and in cars were also associated with increased odds of becoming a victim of violence. [ABSTRACT FROM AUTHOR]

This paper examines the links between place attachment and older persons' preferences to age in place, and factors that disrupt these preferences. We use data from the 2001–2021 Household, Income and Labour Dynamics in Australia Survey and panel-data modelling to confirm strong associations between several place attachment dimensions and aging-in-place preferences. Strong ties to children, strong social capital, residence in social housing, homeownership status, housing wealth, and home and neighborhood satisfaction are all positively linked to a stronger preference to age in place. Our findings reveal important differences between older homeowners and older non-owners. For owners, closeness to children is a strong predictor of aging-in-place preferences, although mortgage debt can trigger involuntary moves. For non-owners, tenure security achieved through longer durations at one's address of residence is linked to stronger aging-in-place preferences. However, private renters are more often exposed to involuntary moves. We discuss the policy implications of these disruptions. [ABSTRACT FROM AUTHOR]

Reducing the prevalence of acute kidney injury (AKI) is an important patient safety objective set forth by the National Quality Forum. Despite international guidelines to prevent AKI, there continues to be an inconsistent uptake of these interventions by cardiac teams across practice settings. The IMPROVE-AKI study was designed to test the effectiveness and implementation of AKI preventive strategies delivered through team-based coaching activities. Qualitative methods were used to identify factors that shaped sites' implementation of AKI prevention strategies. Semi-structured interviews were conducted with staff in a range of roles within the cardiac catheterization laboratories, including nurses, laboratory managers, and interventional cardiologists (N = 50) at multiple time points over the course of the study. Interview transcripts were qualitatively coded, and aggregated code reports were reviewed to construct main themes through memoing. In this paper, we report insights from semi-structured interviews regarding workflow, organizational culture, and leadership factors that impacted implementation of AKI prevention strategies. [ABSTRACT FROM AUTHOR]

Medical Assistance in Dying (MAID) legislation has evolved rapidly in Canada with significant impacts on nursing practice. The purpose of this paper is to describe evolving complexities in legislative context and practice standards that influence the experiences nurse practitioners and registered nurses have with MAID. Qualitative interviews were conducted with 25 registered nurses and 10 nurse practitioners from diverse contexts across Canada. Participants described their practices and considerations when discussing MAID as part of advance care planning; their use of, and challenges with, waivers of consent; their practice considerations in negotiating the complexities of clients for whom death is not reasonably foreseeable; and their moral wrestling with the inclusion of MAID for persons whose sole underlying medical condition is mental illness. Findings illustrate the moral complexities inherent in the evolving legislation and the importance of robust health and social care systems to the legal and ethical implementation of MAID in Canada. [ABSTRACT FROM AUTHOR]

While bystander intervention education has demonstrated promise as a strategy to reduce dating and sexual violence (DSV) on campus, little is known about whether survivors on whose behalf the interventions take place find these helpful. This paper uses qualitative, in-depth interviews with 33 DSV survivors to explore their perspectives on bystander intervention. Results indicate that while some interventions were identified as helpful, especially those that provided support to the survivor, many were not helpful enough or even harmful. Further work is needed to understand the consequences of bystander action. [ABSTRACT FROM AUTHOR]

Despite increasing scholarly and media attention on sexual violence in public spaces, including those associated with the night-time economy and licensed venues, music festivals have been largely absent from research and policy. This paper presents the findings from the first UK study of sexual violence at music festivals, drawing on data from interviews with 13 women who have experienced some form of sexual harassment or assault at a festival. Analysis reveals that sexual violence at festivals occurs on a continuum and represents an extension of rape culture through which sexual violence is culturally condoned and normalized, enabled through a number of environmental and culture features that are unique to festivals. [ABSTRACT FROM AUTHOR]

COVID-19 profoundly shaped how service providers in the antiviolence sector interact with clients, coworkers, and community stakeholders. In addition to stressors inherent in antiviolence work, service providers negotiated new, challenging social distancing and remote communication strategies. In this paper, we analyze interviews with 23 antiviolence workers in the US Great Plains region, focusing on participants' descriptions of workplace boundaries and intimacy. We demonstrate how COVID-19 both expanded and contracted public/private boundaries and formal/informal connections in antiviolence workers' daily experiences. Pandemic conditions revealed the pressing need for frontline workers to exercise discretion over levels of intimate engagement with coworkers and clients. [ABSTRACT FROM AUTHOR]

There exist ongoing calls among social work scholars and practitioners to cultivate applied knowledge of critical and emancipatory practice. In this paper, I explore the utility of text-based vignettes as instruments that can be used to elicit insight from marginalized service users on critical social work practice. To do this work, I draw on data from interviews with 20 transgender and gender diverse (TGD) social service users, along with 10 social workers, whose responses to a text-based vignette were originally used to build an understanding of the constituents of equitable social work practice with TGD people. Incorporating critical pragmatism as a conceptual framework and constructivist grounded theory as a methodological orientation, I analyze data from this study as an exemplar that substantiates the promise of using text-based vignettes in qualitative social work research to generate knowledge of critical social work practice. Specifically, I demonstrate how text-based vignettes in this study (1) contextualized the meaning, significance, and impact of oppression for service users, (2) built insight on practice that reflects solidarity and allyship, and (3) identified opportunities for social workers' reflexive use of professional power to effect change. Accounting for the tensions between empiricism and critical praxis in social work, I consider the promise of incorporating text-based vignettes to develop empirical social work literature that is rooted in the voices of marginalized service users. [ABSTRACT FROM AUTHOR]

This paper concerns parenting assessments which are integral to child-safeguarding professional processes in England, and which involve Deaf parents whose primary language is British Sign Language (BSL). In an under-researched area of social work, the research aim was to contribute to the existing literature by eliciting the practice wisdom of specialist professionals. Specifically, it draws upon their linguistic and cultural knowledge of the Deaf community when they are involved in parenting assessments with Deaf parents who are subject to safeguarding concerns. Data about these professionals' actual experiences of navigating Deaf cultural-competency in contemporary child protection practices were collected through seven video-recorded, semi-structured interviews conducted in BSL. Using interpretive phenomenological analysis, data were analysed in their source language (BSL). This article focusses on one key theme, termed 'Professional Recognition', which incorporates a) the identification of specialist roles and b) the impact of referral processes and protocols on assessment outcomes. The findings highlight participants' perspectives on the benefits and disadvantages of their specialist role in this context. Although their brokerage skills, cultural competence, linguistic fluency and specialist knowledge of the Deaf community are highly regarded and valued by some colleagues, there is insufficient recognition of their existence by the majority. Secondly, participants are concerned by the inefficiency and inconsistency of the referral processes and protocols which they consider have adverse effects on assessment outcomes, and consequently the parents involved. [ABSTRACT FROM AUTHOR]

Background: Empirical studies suggest that gratitude positively influence the quality of life of palliative patients and relatives. However, the literature is marked by a lack of conceptual clarity about what gratitude is and whether it can bring about individual and social benefits. Aim: This paper explores how palliative care patients and relatives understand gratitude, how discursive representations of gratitude may affect their positions, perceptions and relations, and how to conceptualise gratitude in the palliative context. Design: We examine 33 gratitude letters written by patients and relatives and 25 semi-structured interviews conducted as part of a pilot gratitude intervention study. We use a qualitative approach, thematic analysis, within a conceptual framework of discourse analysis. Settings/participants: Data were collected from 23 patients and 13 relatives recruited through three hospital palliative care services in French-speaking Switzerland. Results: Participants articulate gratitude in five ways: (1) appreciating others; (2) love; (3) need to reciprocate; (4) appreciating the little things; (5) solace amid serious illness. While some of these representations are sources of positive emotions and outlook, wellbeing and hope, others may confirm self-perceptions of powerlessness and burden. These results support a tridimensional conceptualisation of gratitude in palliative care as source of individual benefits, valuing closest relationships and moral obligation. Conclusion: Our study suggests that gratitude is a key to a good (end of) life, whilst highlighting potential negative effects. It could help healthcare professionals to better understand what gratitude means to patients and relatives, which may facilitate awareness and fostering of gratitude in palliative care. [ABSTRACT FROM AUTHOR]

Despite extensive research looking at the phenomenon of burnout, little is known about how individuals working in traditionally high-burnout occupations understand the term. Interviews were conducted with six teachers working in state schools in England centring on how the term burnout was understood and how it was used or encountered. Reflexive thematic analysis was employed from a critical realist perspective to analyse the data generated. All participants described burnout as a stress-related condition, yet for some participants the point at which stress became burnout was unclear leading to an understanding that burnout was the point at which one was unable to work. Many participants highlighted an individualistic understanding of burnout, perceiving it as representing an individual deficit rather than an organisational failing. This was often reinforced by where the term was encountered (at work or in the media) and was linked to the stigma many participants associated with burnout. This paper concludes that individualistic framings of burnout obscure its organisational determinants while reinforcing notions that mental well-being is something which should be personally – and privately – managed by individuals. [ABSTRACT FROM AUTHOR]

This paper examines the motivations and contexts for China's highly educated, financially independent single urban women to willingly participate in parental matchmaking. Based on the analysis of two rounds of in-depth interviews with 25 never-married women in Shanghai, Shenzhen and Guangzhou, we find that their participation in parental matchmaking is best understood as an intergenerational alliance formed to mitigate perceived insecurities. Neo-familism, state-endorsed stigmatization and discriminatory polices explain why parents and daughters both prioritize socio-economic security in mate selection. However, the benefits of this inter-generational collaboration are doubtful and asymmetrical, more beneficial to parents than daughters. We contribute to the literature by specifying how state-promoted discourses, neo-familism and women's lived experiences explain their participation in parental matchmaking. [ABSTRACT FROM AUTHOR]

Partnerships between public health and faith-based organizations draw on the strengths of both sectors to achieve a shared interest in promoting health and reducing disparities. However, information about implementation of faith and public health partnerships-particularly those involving diverse racial-ethnic groups-is limited. This paper reports on findings from qualitative interviews conducted with 16 public health and congregational leaders around the country as part of the early phase of the development of a faith and public health partnership to address health disparities in Los Angeles, CA. We identified eight themes regarding the barriers and facilitators to building faith and public health partnerships and distilled these into 10 lessons for developing such approaches. These interviews identified that engaging religious organizations often requires building congregational capacity of the congregation to participate in health programs; and that trust is a critically important element of these relationships. Further, trust is closely related to how well each organization involved in the partnership understands their partners' belief structures, approaches to addressing health and well-being and capacities to contribute to the partnership. Tailoring congregational health programs to match the interests, needs and capacity of partners was identified as an important approach to ensuring that the partnership is successful. But, this is complicated by working across multiple faith traditions and the racial-ethnic backgrounds, thus requiring increased and diverse communication strategies on the part of the partnership leadership. These lessons provide important information for faith and public health leaders interested in developing partnered approaches to address health in diverse urban communities. [ABSTRACT FROM AUTHOR]

Post-separation for domestic violence (DV) survivors is known to be a period of heightened risk of domestic homicide. Evidence points to increased rates of DV during the Covid-19 pandemic, with specific challenges in help-seeking from DV services, yet studies that capture this qualitatively are still emerging. This UK study investigated the experiences of 21 separated DV survivors (all women) during the Covid-19 pandemic. Inductive, thematic analysis highlighted participants' psychological distress, isolation, fear of Covid-19 transmission, and detachment from support networks. The findings reflect the interconnected nature of adversities experienced by DV survivors and the exacerbation of these due to the insidious, multifaceted, and synergistic impacts of DV and the pandemic. [ABSTRACT FROM AUTHOR]

Background: Eating disorders are as common in Māori, the Indigenous people of Aotearoa-New Zealand, as they are in non-Māori; however, research has focused on the experiences of non-Māori. This paper will describe explanatory factors, treatment experiences and what helps with recovery for Māori. Methods: Kaupapa Māori research methodology informed the methods and analysis. Fifteen semi-structured interviews comprised thirteen Māori participants with eating disorders (anorexia nervosa, bulimia nervosa and binge eating disorder) and two whānau (support network) members. A thematic analysis was undertaken by a first cycle of coding that used deductive structural coding to identify data describing participants' perceived causes of eating disorders, their experience of treatment and recovery. A second cycle of coding used inductive analysis with descriptive and pattern coding. Results: Three overarching themes were antecedents (cumulative exposure), treatment (a system of complexities) and recovery (resource empowerment). Antecedents comprised cumulative exposure to body and sporting ideals and adversity as causal factors of eating disorders. In the treatment theme, a system of complexities critiqued rural settings for generalised mental health services, allocation of Māori cultural support, the economic burden of treatment, culturally incongruent treatment (methods, values) and a weight-focused discharge criterion. Recovery (resource empowerment) found appropriate health information, self-determination and connection to Māori culture and whānau aspirations helped with recovery. Conclusion: The diversity of birdcalls reminds us of the individuality of eating disorders. Health practitioners are reminded that just as the Tūī, Kākā and Kererū possess their own unique birdcalls, so do Māori with eating disorders and their whānau have their own experiences, needs and required treatment responses. [ABSTRACT FROM AUTHOR]

Little is known about the lived experience of the dyad following a fetal death and the impact on relationships. The purpose of this paper is to explore the dyadic relationship between partners, with health care providers, and with the baby's memory after birth. This qualitative study utilized hermeneutic phenomenology. The sample included 10 heterosexual dyads from the United States and Canada. All experienced a fetal death between 6 months and 7 years prior to their interviews. The data revealed three themes: (a) The Dyad Relationship: Moving Through the Experience Together; (b) Keeping the Memory Alive: Memorializing the Baby; and (c) Relationships With Health Care Providers: A Spectrum of Caring. The findings from this study provide the beginning knowledge needed to improve the care of dyads who have experienced a fetal death and for future studies to improve care delivery for dyads as their relationships change after fetal death. [ABSTRACT FROM AUTHOR]

This article uses Feminist New Materialist theoretical perspectives on time and temporality to critically explore the social work practice of life story work, designed to help children who are or have been in public care, or are adopted, assemble a coherent narrative of their care journey, adverse experiences and identity. Interview data presented here was produced with 17 participants (foster carers, adoptive parents and social work professionals in care or adoption teams) who were part of a project which sought to understand how aspects of life story work could be transformed into everyday care conversations between children and the adults who care for them (see www.difficultconversations.info). Our analysis highlights the way participants understood and constructed temporal elements of children's experiences and identities: their pasts, presents and futures, in the context of having conversations about care with them. Through the discussion, we indicate a need to loosen the configuration of children's life stories and identities as 'pre-care' and 'post-care', and instead move toward an acceptance of children's multiple selves and multiple important others as existing across time. [ABSTRACT FROM AUTHOR]

Racial justice movements sparked by police killings of Black and Brown persons have led to a reassessment of the role of policing in America. This has promoted important conversations about how best to improve public safety and design law enforcement practices that are equitable and just across communities. A component of this conversation is addressing stress and trauma faced by police as a routine part of their duties, as it can affect the quality of policing. Job-related stress and trauma experienced by police officers are an international phenomenon, yet underexplored areas in social work research and practice. Police officers experience high levels of stress from routine exposure to traumatic situations, leading to high rates of post-traumatic stress disorder, substance use, and depression. Officers who are actively experiencing symptoms of stress and trauma are more likely to engage in misconduct, including the unnecessary use of force. This study explores the stress and trauma-related experiences of police officers. We conducted one-on-one, semi-structured interviews with 23 officers from an urban police department in St Louis, Missouri. Analysis of interviews addressed three areas: (1) stress and trauma experiences associated with police work, (2) negative effects of stress and trauma on officers, and (3) factors impacting officer access to treatment. We conclude that social work can contribute to improved policing outcomes by helping officers address their job-related stress and trauma through engaged research and practice. [ABSTRACT FROM AUTHOR]

Restorative justice practices such as victim-offender dialogue (VOD) have gained traction in the past few decades as routes towards healing amidst high incarceration and recidivism rates and growing public dissatisfaction with punitive carceral structures. However, little work has sought to understand the nuanced experiences of those who engage in VOD processes, in their own words. In this manuscript, we use narrative analytic methods to explore how a dyad involved in VOD process—the individual who engaged in a crime, and a mother and daughter impacted by this crime—transformed over the course of the process (before, 2 weeks after, and 6 months after the dialogue). We found that, for the participating dyad, engaging in the VOD process cracked open the humanity of the other through the vehicles of religion and forgiveness. Our findings echo—and expand—prior work on "forgiveness" in RJ processes, and suggest the need for future research which explores the nuanced role of religion in VOD. Finally, we advocate for the expansion of facilitated dialogue processes as a process with the potential to catalyze individual and community healing. [ABSTRACT FROM AUTHOR]

This commentary is a response to an invitation the editorial board of Qualitative Social Work extended to me to comment on an article that reports on my career interview as a qualitative social work researcher. The article appears in the present issue of the journal (Staller, 2024). The editors and I agree that Karen Staller did an exemplary job of interpreting the transcripts on which the article is based but that the transcripts were incomplete. In my enthusiasm for what I did say, I left things out. In this article, I added to the material that Karen had access to, such as laying out the principles of pragmatism that underlie qualitative social work research and practice and how I coped with the effects of hearing stories about violence and gained from it. I also added to the theory of violence that Karen wrote about and to her descriptions of my relationships with other feminists. I gave a brief account of deductive qualitative analysis that I did not mention at all in the interviews. I realize more than ever that there are differences between interviews, which are spontaneous utterances, and articles, that authors write over time, reflect upon, and revise countless times. Then editors have a go at them. [ABSTRACT FROM AUTHOR]

The United States incarcerates more people than any other country in the world. As a result, a growing body of critical research has sought to understand the impact of the carceral experience, not only on those currently or previously incarcerated, but also on those connected to incarcerated individuals. Much of this research identifies the barriers and difficulties loved ones of incarcerated individuals (LOIs) encounter; however, few of these studies highlight the ways LOIs navigate and overcome such barriers. By using this deficits-framework, LOIs can be mischaracterized as solely powerless or disordered. Also, while many studies importantly identify difficulties in navigating the carceral experience of a loved one, few allow LOIs to speak directly to their needs. Drawing upon deidentified Facebook posts from an online LOI group, the current study takes a strengths-based approach to showcase how LOIs attempt to address their needs and assuage difficulties by engaging in storytelling, advice and information sharing, and advocacy work. [ABSTRACT FROM AUTHOR]

Purpose: Parenting for Lifelong Health for Young Children (PLH-YC) is a program to prevent child maltreatment. This study aimed to examine the feasibility, acceptability and preliminary effects of the adapted program for Chinese parents. Methods: A pre–post single-arm pilot trial was conducted with 21 Chinese parents. A mixed-method design was utilized to collect questionnaire-based quantitative data and qualitative data of interviews and focus group discussions. Results: Program implementation was feasible, with overall high recruitment, enrollment, attendance, acceptability and fidelity. Quantitative results demonstrated reductions in general child maltreatment, physical and emotional abuse, child behavioral problems, and improvements in positive parenting. Thematic analyses identified reduced violent discipline, psychological aggression, and child behavioral problems, strengthened parent–child bonds, increased parenting confidence, and decreased family conflict. Conclusion: The adapted PLH-YC program for Chinese parents has shown good feasibility and acceptability, and exhibited a significant association with reduced child maltreatment. Further randomized controlled trials are required. [ABSTRACT FROM AUTHOR]

A woman's choice to remain childfree is often met with disapproving comments. This article focuses on pronatalism and the social discourse that promotes and maintains motherhood as the preferred choice for women in a country that has achieved high levels of gender equality. Critical discourse analysis is applied to 30 qualitative interviews with women, trans, and non-binary people in Iceland, who are either childfree by choice or who regret motherhood. The results indicate that despite neoliberalism advocating a woman's right to freedom of choice, pronatalist ideologies continue to undermine reproductive self-determination, promoting motherhood as the right choice. Unsolicited comments act as powerful mechanisms that serve to shame those who can bear children into becoming mothers or facing regret yet simultaneously condemn women who regret motherhood. Women who choose to remain childfree privately challenge unwanted comments by overturning pronatalist discourses, whereas those who regret their choice to become mothers struggle to express their feelings for fear of being judged and branded as failures. [ABSTRACT FROM AUTHOR]

Background: Both the high-risk human papillomavirus (HR-HPV) infection and tobacco exposure are significantly associated with cervical neoplasm risk. Immune cells play important roles in carcinogenesis. However, it is still unclear whether immune cells have a mediating effect on the HR-HPV infection and tobacco exposure with cervical neoplasm development. Aim: The aim of this study was to determine how the increased white blood cell (WBC) count affects the relationship between HR-HPV DNA load and tobacco exposure in the development of cervical neoplasia. Methods: A hospital-based case–control study design was conducted with a total of 108 cases of Taiwanese women with ≥ cervical intraepithelial neoplasia (CIN) I confirmed by biopsy, and 222 healthy Taiwanese female subjects with negative findings on a Pap smear were assigned to the control group. The study evaluated HR-HPV status and immune cell counts (WBCs, natural killer (NK) cells) and tobacco exposure by a self-construct questionnaire. Results: Both HR-HPV DNA load and tobacco exposure significantly independently increased cervical neoplasm risk (AORs: 1.28 and 1.42, respectively). Similar significant results were found for WBCs and NK cells, with respective AORs of 1.20 and 1.00. Moreover, increased WBCs (β = 0.04, 95% CI corrected: 0.01–0.07) and tobacco exposure (β = 0.02, 95% CI corrected: 0.01–0.04) mediated the relationship between the high-risk HPV DNA load and cervical neoplasm risk. Conclusions: Elevated WBC count acts as both predictor and mediator in cervical neoplasm development linked to HR-HPV DNA load. Monitoring and maintaining WBC levels within the normal range could be a preventive strategy for cervical neoplasm development. [ABSTRACT FROM AUTHOR]

How can we make sense of the range of organizational dynamics that emerge when managers of multi-national enterprises (MNEs) seek to serve their interests as they perceive multiple demands in relation to corporate social responsibility (CSR)? In this article, I conceptualize this situation as a case of CSR institutional plurality. Drawing from the literature on MNE micro-politics, which I connect to the CSR literature, I analyze qualitative data gathered from five subsidiaries of a UK MNE to which their HQ transferred CSR reporting: a global norm with a typical explicit CSR mode. My analysis reveals that subsidiary managers responded to CSR institutional plurality by developing aligned or contested versions of the global CSR norm, that were then promoted through the deployment of discursive and symbolic tactics. I develop a grounded model that improves understanding of three power capabilities of subsidiary actors, that is, their socialization to explicit CSR norms, the exercise of employee voice and their political capital that can be deployed to support or curb the advancement of the managerial tactics. In doing so, I reveal the complex pathways through which lower-status subsidiary actors can take part in the reconfiguration of a global CSR norm. [ABSTRACT FROM AUTHOR]

Objectives: Few evidence-based psychosocial programs exist within craniofacial care. This study (a) assessed feasibility and acceptability of the Promoting Resilience in Stress Management-Parent (PRISM-P) intervention among caregivers of children with craniofacial conditions and (b) described barriers and facilitators of caregiver resilience to inform program adaptation. Design: In this single-arm cohort study, participants completed a baseline demographic questionnaire, the PRISM-P program, and an exit interview. Participants: Eligible individuals were English-speaking legal guardians of a child <12-years-old with a craniofacial condition. Intervention: PRISM-P included 4 modules (stress-management, goal-setting, cognitive-restructuring, meaning-making) delivered in 2 one-on-one phone or videoconference sessions 1–2 weeks apart. Main Outcome Measures: Feasibility was defined as >70% program completion among enrolled participants; acceptability was defined as >70% willingness to recommend PRISM-P. Intervention feedback and caregiver-perceived barriers and facilitators of resilience were summarized qualitatively. Results: Twenty caregivers were approached and 12 (60%) enrolled. The majority were mothers (67%) of a child <1-year-old diagnosed with a cleft lip and/or palate (83%) or craniofacial microsomia (17%). Of these, 8 (67%) completed PRISM-P and 7 (58%) completed interviews; 4 (33%) were lost-to-follow-up before PRISM-P and 1 (8%) before the interview. Feedback was highly positive, with 100% willing to recommend PRISM-P. Perceived barriers to resilience included uncertainty about their child's health; facilitators included social support, parental identity, knowledge, and control. Conclusions: PRISM-P was acceptable among caregivers of children with craniofacial conditions but not feasible based on program completion rates. Barriers and facilitators of resilience support the appropriateness of PRISM-P for this population and inform adaptation. [ABSTRACT FROM AUTHOR]

Precarious Employment (PE) is characterized by job, income, and benefit insecurities. Studies surrounding PE and well-being have been predominantly quantitative, leaving a gap in rich descriptions of employment experiences. We recruited a sample of 40 adults aged 25-55 who were involved in PE during the beginning of the COVID-19 pandemic or lost employment due to the pandemic. Semi-structured interviews were administered. Employment and income insecurities were common and had negative impacts on the well-being of participants and their families. Uncertainty about future employment prospects and job and income loss resulted in chronic distress. Other insecurities—access to benefits, violation of worker rights, worker safety—was also reported as impacting well-being. The COVID-19 pandemic deepened insecurities, hardships, and distress among workers with PE conditions. Given the myriad insecurities experienced by those engaged in PE, the focus of precarious work research should also include working conditions, violation of worker rights, and managerial domination. [ABSTRACT FROM AUTHOR]

To explore themes regarding work-related barriers to access to health care, we conducted 32 interviews, 16 with third gender people and 16 with cisgender women, all of whom were all living with HIV in Hyderabad, India. Most respondents were members of Dalit castes and had been living with HIV for several years at the time of the interview. Using thematic content analysis, interviews were coded by two researchers using a social determinants of health conceptual framework. Themes highlighted in this study include the burden of taking time off from work, the loss of pay associated with missing work, and the interruption of gendered care work responsibilities that respondents faced when seeking treatment. Findings from this study support the claim that equitable work policies and practices for marginalized laborers can increase access to medical care for people living with HIV. [ABSTRACT FROM AUTHOR]

Introduction: In 2018, The Live Well Allegheny: Lifting Wellness for African Americans (LWA2) Initiative was developed to support six priority, Black communities in Allegheny County, Pennsylvania to address health equity in chronic disease. The LWA2 coalition members participated in ongoing anti-racism and racial equity sessions with a nationally recognized anti-racist facilitation team. The sessions included a 2-days experience in January 2020 along with follow up meetings throughout 2020. Methods: Surveys were administered to understand their perceptions related to anti-racism and oppression and subsequent actions as a result of the sessions. Additionally, we conducted nine in-depth interviews with organizational partners (January -May 2020) to evaluate the overall effectiveness of the coalition and inform future activities. Results: Ten participants completed the post session surveys. Seven out of 10 survey respondents felt they had a good understanding of how oppression (racism, sexism, capitalism) influenced their life and work. However, the majority indicated needing the tools to implement anti-racist strategies in their work. The in-depth interviews with organizational partners revealed that racial equity was of concern to all partners but there was variability in intentionality around racial equity as a core element of each organization's mission, goals and subsequent actions. Discussion: As a result of the interviews, coalition members developed a racial equity statement and theory of change for implementation in the coalition work and within individual organizations along with a plan for implementing an equity audit of the coalition. Coalitions of this kind should be intentional about implementing continuous strategies related to anti-racism for structural changes toward achieving racial equity in their overall work. [ABSTRACT FROM AUTHOR]

Background: The Greater Lawndale Healthy Work project is a sequential mixed methods community based participatory research project that examines work as a structural determinant of health and builds community capacity for healthy work in a predominantly Black and Latinx community in Chicago known as Greater Lawndale (GL). Objectives: We interviewed community leaders in GL as key informants to understand the barriers to healthy work and inform intervention development. Methods: We conducted a directed content analysis of transcripts from 20 key informants and coded the social ecology and type of intervention. Results: Every key informant mentioned at least one asset in GL, showing an opportunity to employ a capacity-oriented approach to intervention development. Key informants suggested a variety of interventions to address precarious work across levels of the social ecology, with individual and community level interventions being the most salient. Conclusion: Through this approach, we were able to navigate tensions and challenges in conducting research for community-wide change. Key informant stakeholder interviews can be leveraged to meaningfully inform intervention development and support the development of multi-level, sustainable, and culturally acceptable interventions that advance health equity. [ABSTRACT FROM AUTHOR]

Concerns have been raised about genomic studies of autism. Most recently, the Spectrum 10 K study was paused due to criticism from the autistic community. This situation raised important questions about how the autistic and autism communities perceive genomic research. The Personal Experiences of Autism and Perceptions of DNA-based-research study was established to address this issue. Twenty parents of nonverbal or minimally verbal autistic children took part in the current study. Data were provided in diverse formats including online interviews, telephone interviews, and writing. This approach was co-produced with autistic experts by experience. Data were analysed using reflexive Thematic Analysis. We found that participants were supportive of autism research, including some genomic research, if it is designed to support autistic people and is ethical and transparent. However, while some believed that polygenic scores, genomic predictors of the statistical probability of being autistic, would be helpful, others argued that this would only be true in an ideal world. Participants felt that they and their children were often excluded from, and unrepresented by, the autistic and autism communities. We conclude that genomic researchers need to work with the autistic and autism communities to design future work, and that it is important to ensure a representative range of voices are heard. In Summer 2021, a genomic study of autism, Spectrum 10 K, was paused due to backlash from the autistic and autism communities. This raised important questions about how these communities perceive genomic research. The Personal Experiences of Autism and Perceptions of DNA-based research study was established to address this issue among a range of sub-groups within these communities. Twenty parents of nonverbal or minimally verbal autistic children took part in the current study. Data were provided in diverse formats including online interviews, telephone interviews, and writing. This approach was co-produced with autistic experts by experience and involved a parent of a minimally verbal autistic child. Data were analysed using reflexive Thematic Analysis. We found that participants were supportive of autism research, including some genomic research, as long as it is designed to support autistic people and is ethical and transparent. However, while some believed that polygenic scores, genomic predictors of the statistical probability of being autistic, would be helpful, others argued that this would only be true in an ideal world and that the world is too far from ideal. Participants felt excluded from the autistic and autism communities and that the dominant voices in those communities do not represent them or their children. We concluded that genomic researchers need to work with the autistic and autism communities to design future work, and that it is important to ensure a representative range of voices are heard. [ABSTRACT FROM AUTHOR]

Background: In palliative care, the Utrecht Symptom Diary – 4 Dimensional (USD-4D), a Dutch-adapted and validated patient-reported outcome measure, supports multidimensional symptom management through identification and monitoring of, as well as dialogue on symptoms and needs. For the USD-4D to optimally support patients' autonomy, it is essential to know what patients need to use it. Objective: This study aims to identify what patients need when using the USD-4D in clinical palliative care. Design: A generic qualitative design with primary and secondary analyses of semistructured interviews. Methods: Patients ⩾18 years with a life-limiting illness were purposefully recruited within hospice and home care settings if they were in their last year of life as identified by the surprise question. Patients had to be aware of their life-threatening condition. Patients were selected in two tranches. In the first tranche, patients had to have completed the USD-4D at least once. The second tranche consisted of patients who were not familiar with the USD-4D in clinical practice and were interviewed in a previous study on the content validity of the USD-4D. The interviews were transcribed verbatim and were subjected to thematic analysis. Results: Twenty-five patients were included (14 men, ages 44–87). Patients' needs when using the USD-4D were summarized in three themes: (1) feeling invited, (2) being aware of the purpose and function of the USD-4D, and (3) experiencing a personal and nonjudgmental approach. Conclusion: For patients to optimally benefit from the USD-4D as a supportive measure of their autonomy in clinical palliative care, it is essential that they feel invited to use it. Healthcare providers are tasked with setting the right preconditions for patients to want and to be able to use the USD-4D. For patients, this means healthcare providers should always be attuned to their personal preferences when communicating the purpose and function of the USD-4D and when they enter into dialogue with them. [ABSTRACT FROM AUTHOR]