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Sociologists have shown that moral understandings of market exchanges can differ between historical periods and institutional settings, but they have paid less attention to how producers' moral frameworks vary depending on their unequal positions within both markets and institutions. We use interviews and ethnographic observations to examine the vibrant market of research shops selling academic work to students around two of Uganda's top universities. We identify three groups of researchers—Knowledge Producers, Entrepreneurs, and Educators—who construct different professional identities and moral justifications of their trade, and who orient their market action accordingly. We demonstrate that these identities and moral frameworks reflect an interplay between the institutional contexts and the social class positions that researchers occupy within this illicit market. Knowledge Producers and Entrepreneurs both experienced a sense of "fit" with their respective institutional cultures, but the former now see their work as compromising ideals of research, whereas the latter capitalize on what they view as a broken system. Educators, disadvantaged at both institutions, articulate a framework countering the dominant institutional cultures and sympathetic to underperforming students. This approach illuminates how institutional contexts and individual class positions within them influence producers' moral frameworks, leading to differentiation of the market. [ABSTRACT FROM AUTHOR]

Background: The World Health Organization Astana Declaration of 2018 sees primary healthcare as key to universal health coverage and gives further support to the goal of building sustainable models of community palliative care. Yet evaluating the benefits of such models continues to pose methodological and conceptual challenges. Objective: To explore evaluation issues associated with a community-based palliative care approach in Kerala, India. Design: An illuminative case study using a rapid evaluation methodology. Methodology: Qualitative interviews, documentary analysis and observations of home care and community organising. Results: We appraise a community palliative care programme in Kerala, India, using three linked 'canvases' of enquiry: (1) 'complex' multi-factorial community-based interventions and implications for evaluation; (2) 'axiological' orientations that foreground values in any evaluation process and (3) the status of evaluative evidence in postcolonial contexts. Three values underpinning the care process were significant: heterogeneity, voice and decentralisation. We identify 'objects of interest' related to first-, second- and third-order outcomes: (1) individuals and organisations; (2) unintended targets outside the core domain and (3) indirect, distal effects within and outside the domain. Conclusion: We show how evaluation of palliative care in complex community circumstances can be successfully accomplished when attending to the significance of community care values. Plain language summary: Where are the values in evaluating palliative care? Learning from community-based palliative care provision The evaluation of any intervention or service will inevitably involve a series of decisions on what we measure, what criteria we use to judge whether the intervention has been successful (or not), what type of data we actually collect and what methods we use to do this. When evaluating a range of palliative care interventions, we suggest that these decisions have often been taken in a concealed way and tend to favour relatively narrow quantitative measures linked to end outcomes. Our paper reports on the evaluation of a community-based palliative care intervention on Kerala, India. In it, we suggest that such complex work requires a broader approach to evaluation that: makes the values being used to assess success explicit; draws on a range of data types; is interested in delivery processes; and places the voices of participants at the heart of the assessment. The paper concludes with some broader observations on how these principles might be applied more widely within palliative care. [ABSTRACT FROM AUTHOR]

Self-tracking in general, and by women in particular is increasingly researched. In the literature, however, women's interactions with selftracking technologies in menopause—a change that (almost) every woman will go through—is largely taken for granted. This paper addresses this lacuna by asking whether and how menopausal women use self-tracking technologies, and how this (non-) usage mediates their self-experiences. In doing so, it elaborates on another understudied phenomenon: the constitutive significance of "un-tracking"—that is, of various shades and levels of not using self-tracking technologies—in menopause. Most of the 13 interviewed women in this study reported that they stopped, drastically reduced, or resisted self-tracking in menopause. By framing the discussion of these accounts of "un-tracking" within the tradition of post-phenomenology and a phenomenology of situated bodily self-awareness, we show that these women experience their bodies as (1) wise and eu-appearing, (2) unmoldable and dysappearing, and (3) longing for disappearance. Herein, their experientially mediating un-tracking practices are temporally and socio-culturally contextualized in complex ways and bear substantial existential significance. This study establishes the potential harmful ways in which self-tracking mediates self-experiences, as well as the fruitful ways in which un-tracking may do so. Against the background of this observation, this paper makes an appeal to take a step back from uncritically celebrating self-tracking in healthcare contexts, and critically evaluates whether (the promotion of) using (more) self-tracking technologies in these contexts is desirable to begin with. [ABSTRACT FROM AUTHOR]

Introduction: Fresno, California, is home to more than 30,000 Hmong. The purpose of this research was to explore the utilization of Hmong shamans 40 years after the first Hmong immigrants arrived in the United States. Hmong shamanism is examined to identify and analyze changes to shamans' practices or patients. Methods: Using grounded theory, semistructured interviews were conducted with a convenience sample of 20 shamans in their homes. Transcribed data were qualitatively analyzed. Results: Shamans continue to train and practice in this community; utilization by older patients persists while young adult patients have become the fastest-growing group of users. Healing rituals have changed in response to the legalities of animal sacrifice in urban areas and the time demands of work schedules. Discussion: Nurses' awareness that the availability of biomedicine does not preclude the continuing or recurring utilization of traditional healers can facilitate understanding of culturally defined health care needs. [ABSTRACT FROM AUTHOR]

Rapport is generally considered an essential component of successful interviewing, where participants are willing to share and divulge information. The present paper contributes to the research on rapport in qualitative interviewing by exploring ethical tensions that researchers may experience when conducting qualitative interviews with vulnerable participants. The analysis is based on semi-structured interviews with nine researchers from various fields within social sciences who had extensive experience in doing research with diverse vulnerable groups. We identified six ethical tensions related to building rapport with people in vulnerable life situations that cover issues concerning both too little and too much rapport. Findings illustrate that rapport as the 'ideal' for the researcher-participant relationship may need nuancing. The study concludes that researchers undertaking qualitative interviews on sensitive topics need to have a conscious awareness of ethical tensions that may arise when building rapport with their participants [ABSTRACT FROM AUTHOR]

The use of digital technologies in qualitative research has been found to increase access and participation by minimizing geographical, scheduling, and financial barriers. However, discussions among the qualitative research community about the challenges of conducting research online and, specifically, what steps can be taken to mitigate "imposter participants" remain limited. Anchored in a critical disability studies perspective, in this field note paper, we discuss lessons learned in conducting online qualitative research and preserving data trustworthiness. [ABSTRACT FROM AUTHOR]

This paper presents a new methodological model that was developed whilst carrying out an Institutional Ethnography to explore school food working practices. The model brings together two complementary approaches; Institutional Ethnography and Systems Thinking, to offer a novel approach to the analysis and visualisation of ethnographic data as systems maps that show how power shapes practices. This novel contribution allows for the mapping of complex working practices to show interdependencies and flows, and addresses limitations in the applicability of Institutional Ethnography to policy research. This approach will be useful for researchers and practitioners who want to utilise findings from Institutional Ethnography to design effective interventions, change outcomes of working practices, or tackle policy problems. [ABSTRACT FROM AUTHOR]

Purpose: Chronic pain is a complex biopsychosocial experience, and rehabilitation helps people to manage pain, and restore valued life roles. Evidence suggests that more positive outcomes occur when clients perceive their rehabilitation to be meaningful. People with chronic pain describe rehabilitation as personally-meaningful when they develop a genuine connection with a credible therapist who they see as a guiding partner, and when rehabilitation holds personal value, is self-defined, and relevant to their sense of self-identity. This paper presents a qualitative study of therapists' experience using an e-learning package on patient-defined, personally-meaningful rehabilitation. Methods: A qualitative descriptive design was used to explore rehabilitation therapists' experience of a prototype evidence-informed, online resource developed on the basis of eLearning and web-design principles. Semi-structured interviews and focus groups were conducted with a purposive sample of occupational therapists and physiotherapists, and inductive coding and thematic analysis of transcripts was completed. Findings: Twenty-four therapists (12 occupational therapists, 12 physiotherapists) participated, representing a mix of gender and experience (early career; experienced; and specialist). Four themes and 12 sub-themes emerged from the analysis. The resource delivered a positive user experience, which added (translational) value to enhance learning, and participants were highly positive about the future potential of the resource to translate chronic pain rehabilitation research for early career, experienced, and specialist rehabilitation therapists. Conclusion: Results suggest that the disparate learning needs of rehabilitation therapists from diverse professional backgrounds and experience, may be addressed through the one resource. Participant feedback provides evidence that the resource fits with current models of learning and behaviour change. This study demonstrates the importance of basing online resources on eLearning and web-design principles to translate complex biopsychosocial chronic pain rehabilitation research for rehabilitation therapists. [ABSTRACT FROM AUTHOR]

Background: Compassionate communities have been put forward as a promising model for community-based support for people facing serious illness, caregiving, dying, and loss. In particular, educational institutions are increasingly acknowledged as potential settings to function as compassionate schools and compassionate workplaces, cultivating acceptance and validation of these experiences beyond the university setting. Objectives: This paper investigates the activities and outcomes of a compassionate community initiative—the Compassionate University program at the Vrije Universiteit Brussel in Belgium. Design: Ripple Effects Mapping was used to guide the focus group and individual interviews conducted with core team members responsible for the development and implementation of the Compassionate University program. Methods: During the focus group and individual interviews, the core team members reflected on the program contributions, with their narratives visually depicted via a hand-drawn mind map. Qualitative data derived from this mind map were entered into XMIND mapping software and fine-tuned based on the focus group and individual interview transcripts and additional project records. Results: Thematic analysis identified four outcome areas that encapsulate the key contributions of the Compassionate University program: (i) increased acceptance and integration of topics such as serious illness, death, and bereavement into existing practices; (ii) broader support for and formalization of compassionate procedures and policies; (iii) emergence of informal networks and internal collaboration on the topics; and (iv) diffusion of compassionate ideas beyond the university. Conclusion: The Compassionate University program facilitates a cultural shift within the university environment, fostering greater acceptance of integrating topics such as serious illness, death, and bereavement into existing practices. Additionally, compassionate procedures and policies for students and staff have been formalized, and core team members are increasingly called upon to provide support on these matters. Notably, Compassionate University stands out as one of the pioneering initiatives in Europe, attracting different educational institutions seeking guidance on cultivating a more compassionate environment. [ABSTRACT FROM AUTHOR]

Background: Glioblastoma, a high-grade primary brain cancer, has a median survival of approximately 14 months. Post-mortem brain donation provides insight to pathogenesis along with spatial and temporal heterogeneity. Post-mortem brain biobanking programs are increasing in number and the need to understand and improve the associated human experience is pressing. This study aims to qualitatively explore the experiences of next of kin (NOK) following the death and brain donation of a loved one and to understand the impact such programs have on NOK carers. Method: We interviewed 29 NOK following the death of their loved one and subsequent brain donation. Thematic analysis was conducted on the transcribed, qualitative interviews. Results: Four themes were identified; (1) Brain donation is a straightforward decision grounded in altruism and pragmatism; (2) Supporting donors is a source of comfort, pride and empowerment; (3) Brain donation can provide meaning for suffering and tragedy and (4) Perceptions of procedures and processes when supporting a loved one to donate. Insights into areas for improvement, for example transporting donors following a home death and the role of the body bag were also noted. Conclusion: Supporting a loved one to donate their brain can be a positive experience providing a source of hope, empowerment and purpose for NOK. Data indicating areas for consideration are broadly relevant for improving the delivery of brain donation programs for future donors and their loved ones. Plain language summary: Understanding how loved ones feel about someone close to them donating their brain to research after their death from brain cancer The act of donating brain tissue after death from brain cancer is a huge gift to medical research and may have an impact on the ability of the scientific community to improve outcomes for people diagnosed with brain cancers. While we understand how valuable these donations are for research, we need more work to understand how these donations impact the people who donate and those who love and support them. This paper explores the experiences of people who have lost someone to brain cancer who then went on to donate their brain tissue after their death. Through the use of interviews, it explores the impact that the donation has on a loved one or next of kin from providing a source of comfort, empowerment, pride or an alternative to 'senseless' suffering and tragedy. It also provides areas that should be considered by people who are facilitating brain donations to ensure that any potential, harm or upset can be minimized. [ABSTRACT FROM AUTHOR]

Researchers conducting community-based action research (CBAR) become immersed in their field site, developing close relationships and enabling members of the community to pursue social action. We contribute a nuanced analysis of the impact of CBAR on those who participate in the method, particularly participants who live rurally. Situating this work in the history and prior methodological examinations of CBAR, we demonstrate the critical relationship between this research approach and the rural landscape. Our findings speak to two research questions: how do participatory- and otherwise community-based, action-oriented research methods impact those who participate in research? And, how do researchers and research participants make sense of this impact? Using interview, observation, and photographic data, our analysis indicates that community members' perceptions of CBAR exist on a spectrum situated around two key, but fluid, positions: the 'trusted outsider' and the 'affective collaborator.' Our findings provide researchers with a stronger methodological foundation to approach community-based, action-oriented research with an ethic of care. Further, our findings provide methodologists with a better understanding of the multi-directional impact of doing CBAR and the ways we can use this information to do CBAR ethically and effectively. In this way, our paper contributes to a growing body of scholarship regarding the practice and impact of collaborative, community-based research approaches. [ABSTRACT FROM AUTHOR]

Researchers' reflexivity usually focuses on the spatiality and sociality of their ethnographic fieldwork. As a result, the temporal context of their positionality, whereby their various identities interact with one another at different research phases, is often overlooked. This paper adopts an agentic intersectional approach and draws from our separate studies of Thai migrant women in Belgium and Hong Kong to unpack the temporality of the power dynamics between study participants and us (the researchers). Through this reflexive exercise, we identify three salient aspects: first, different identities of the researchers intersect at each phase of the study; second, researchers are dependent on gatekeepers and study participants, notably during the data-gathering phase; and third, the changing researcher–participant dynamics throughout the research process are embedded in broader relations of power that encompass social institutions and migrant/ethnic networks. Hence, researchers' self-discipline and constant awareness of positionality are of utmost importance for achieving well-situated knowledge (re)production. [ABSTRACT FROM AUTHOR]

Background: Data on children who grow up with parents adhering to violent extremism is scant. This makes it extremely delicate to inform policies and clinical services to protect such children from potential physical and psychological harm. Objective: This paper explores the predicament of children whose caretakers were referred to a specialized clinical team in Montreal (Canada) because of concerns about risks or actual involvement in violent extremism processes. Methods: This paper uses a mixed methods concurrent triangulation design. Quantitative data was obtained through a file review (2016–2020). Qualitative data was collected through semi-structured interviews and a focus group with the team practitioners. Results: Clinicians reported the presence of stereotypes in the health and social services network frequently representing religious extremist parents as potentially dangerous or having inappropriate parenting skills while minimizing the perception of risk for parents adhering to political extremism. Children displayed high levels of psychological distress, mainly related to family separation, parental psychopathology, and conflicts of loyalty stemming from familial or social alienation. Conclusions: Training practitioners to be aware of their own personal and institutional bias may help them to understand the predicament of extremist parents' children and implement systemic, trauma and attachment informed interventions. [ABSTRACT FROM AUTHOR]

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]

The North American Muslim population is growing rapidly, but little research has been conducted to help social workers interact with members of this population in a culturally sensitive manner. To assist social workers engage with Muslims in an ethical and effective manner, this qualitative study sought to answer the following questions: how do Muslims experience interactions with non-Muslims and what have they learned from their encounters that might facilitate positive interactions? To answer these two questions, we used narrative inquiry with a sample of 10 Muslim social work students and recent alumni. The findings suggest that Muslims may be treated either positively or negatively by non-Muslims in interactions in various contexts, that they are frequently unable to voice their religious perspectives, and that their religious difference is often portrayed in single-sided or negative ways as well as prioritized against their wishes while ignoring other aspects of their social identities. As a result, many tend to avoid interactions with non-Muslims. The paper offers strategies to foster more respectful interactions with Muslims, such as attending to how much their religious difference is prioritized, and providing opportunities to share their perspectives. [ABSTRACT FROM AUTHOR]

In this article, we report on a follow-up session that was organised to share findings with children about a participatory research project they had been involved in a few months earlier. This was motivated by the ethical concern that it is the children’s right to be informed about the results of the research. In the process of reflecting on the research project, however, the children diverted the researcher’s focus onto aspects of the research that mattered to them. Rather than discussing the results and the benefits of the research, the children were keen to discuss issues of representation, questioning the researcher about pseudonyms, transcribing and their role and presence in the dissertation. The follow-up session opened up a transformational space where both the child participants and the adult researchers gained new understandings about research processes and relationships. We argue that such retrospective reflection can be a beneficial tool to explore children’s post hoc interpretations about the research, while developing researcher reflexivity. [ABSTRACT FROM PUBLISHER]

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]

The study explores the role of the Eye to I© intervention model in facilitating advancement through social stages of play in which skills contribute to the quality of social interaction and communication in children with autism. Data were collected on 11 participants, ages of 2–6 years, formally diagnosed with autism, receiving Eye to I© Social Communication therapy at Potentials Therapy Center, New Delhi, India. Eye to I© is developed in-house at Potentials and is further discussed in the paper. All participants attended a form of group intervention. A mixed-method design included quantitative measures administered pre and post intervention (Communication DEALL Developmental Checklist, Communication Matrix) and video coding of Social Communication sessions. Qualitative measures were semi-structured parent interviews conducted at the end of intervention. Thematic analysis and quantitative statistical analysis results show that by the end of the Eye to I© intervention period children engaged in social stages of play of greater developmental complexity and showed increased scores in assessments of social skills as well as generalization of skills. This suggests that skill acquisition necessary to directly support two diagnostic criteria areas of autism as per DSM-V; i.e., communication and social interaction occurred during the period of intervention. [ABSTRACT FROM AUTHOR]

This article explores men's experiences of and management strategies for urinary incontinence (UI) following treatment for prostate cancer. Qualitative interviews with 29 men, recruited from two prostate cancer support groups, explored their post-treatment experiences. Drawing on a conceptual toolkit connecting theories of masculinities, embodiment, and chronic illness, this paper identifies older men's experiences and strategies for managing UI and explores how these are shaped by their masculinities. This article identifies interdependence between managing stigma for UI and maintaining masculinity. Men's embodied practices for engaging in activities in public, crucial to masculine identity, were disrupted. In response, they adopted new reflexive body techniques to manage and resolve their UI, and thereby address the threat to their masculine identities, characterised in three strategies: monitoring, planning, and disciplining. The new embodied practices men described suggest three factors as important components for adopting new reflexive body techniques: routine, desire, and unruliness. [ABSTRACT FROM AUTHOR]

How do we explore the meaningfulness of others' experiences? What means do we have to access their experiencing of the world? How do we express our understandings of others' experiences of body and place without reducing them to objectification? In this methodological paper, we reflect on how we can gain valuable insights into the lived experiences of others through research activities that are conducted 'alongside' participants. Phenomenological concepts of intentionality and embodiment are considered as we draw on an empirical example of exploring the experiences of hospitalized patients with neurological diseases through observations and interviews. The aim is to unfold alongside as an epistemological stance to explore the meaning of another's lifeworld. We strive to show that personal presence and engagement within this approach contains relational, existential, and aesthetic dimensions worth considering. [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]

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]

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]

Feminist scholars have focused on paid domestic labour as a site of gendered inequalities structured by race, gender, class, and citizenship. However, men are largely absent from feminist intersectional understandings of everyday interactions within paid domestic labour. This paper draws on an interview study of South African domestic workers focusing on their talk about interactions with male employers. The analysis demonstrates that talk about routines of the physical and symbolic absence of men can become normalised within domestic labour discourse. This is a narrative that is only brought to light once men's (lack of) presence is made a topic. The conspicuous absence of analyses of this kind within paid domestic labour studies points to unfinished and troubling feminist projects. [ABSTRACT FROM AUTHOR]

Research shows that patients can have values and use practices that are different from those envisioned by technology developers. Using sociomaterialism as an analytical lens, we show how patients negotiated with digital self-monitoring in the context of a scientific study. Our paper draws on interviews with 26 patients with the chronic neurological disease multiple sclerosis (MS) who were invited to use an activity tracker and a self-monitoring app for a period of 12 months as part of their everyday life. Our study aims to fill a gap: relatively little is known about how digital self-monitoring becomes materialized in the everyday lives of patients with chronic diseases. We show that patients engaged in digital self-monitoring because they are eager to participate in research to contribute knowledge that will benefit the larger community of patients rather than to improve their personal self-management. Although respondents adhered to digital self-monitoring during the study, it is not self-evident that they would do so for private self-monitoring purposes. It became clear that respondents did not necessarily perceive digital self-monitoring as useful for their self-management practices due to their established knowledge and routines. Moreover, respondents referred to the inconvenience of having to perform self-monitoring tasks and the emotional burden of being reminded of the MS because of the digital self-monitoring. We conclude by indicating what could be considered when designing scientific studies, including the suitability of conventional study designs for evaluating technologies used daily by patients and the challenge of integrating patients' experiential knowledge into scientific practices. [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]

Undertaking research involving vulnerable groups, such as those requiring resuscitation involves careful analysis during the ethical review process. When a person lacks the capacity to make an informed choice about their participation in a research study, a waiver of consent offers an alternative. This paper is based on a doctoral research study using ethnography to explore the resuscitative practices and experiences of rural nurses through observation and interviews. This paper aims to explore the ethical issues raised by the Human Research Ethics Committee relating to consent of vulnerable patients requiring resuscitation within a rural context. In particular, the challenges of addressing risk (privacy) vs benefit (public) associated with a waiver of consent. This paper will consider why the rural context should be championed during the ethical review process, when decisions about public benefit are being deliberated. Utilising a communitarianism approach that advocates for greater rural representation during the ethical review processes will ensure that rural research involving vulnerable groups can be addressed safely and benefit not only the experiences and practices of rural nurses but also the wider rural communities they serve. [ABSTRACT FROM AUTHOR]

Within qualitative research, much can be learned from the influence of researcher positionality on the research process. Reflecting upon ethnographic fieldwork undertaken for a doctoral study, this paper explores how researcher positionality not only shapes research motivations but also situates the researcher and the 'researched', impacting how data is created and interpreted. There is a long history of engaging with positionality in qualitative research, however, oftentimes this engagement is purely descriptive, providing a 'shopping list' of characteristics and stating if these are shared or not with participants. It is important for engagement with reflexivity to go beyond providing a 'shopping list' of positionality statements to develop deeper discussions about the fluidity of positionality across the research process. Using the previously established concept of 'kitchen table reflexivity', I reflect on how talk allows researchers to outline shifts and adaptability in positionality as research progresses. I expand this concept to argue that kitchen table reflexivity can occur in conversations during fieldwork with participants, utilising a range of in/visible tools at the researcher's disposal. For example, the spaces between fieldwork encounters, the 'waiting field', is often where observations and informal discussions with participants take place. Using fieldnotes and interview data, this paper outlines how positionality fluctuates and interweaves with the theoretical, methodological, and analytical approach taken. The paper concludes by restating the importance of meaningful engagement with positionality throughout qualitative research, in order to avoid static and hollow positionality statements. [ABSTRACT FROM AUTHOR]

Introduction: A National Cancer Information System is planned for phased implementation in Irish cancer centres to enable electronic prescribing (ePrescribing) of systemic anti-cancer therapy. This study aimed to capture the opinions of healthcare professionals in a hospital setting relating to the current paper-based workflow for systemic anti-cancer therapy prescribing and their attitudes and expectations of the new ePrescribing system to develop recommendations, which assist in the planning and implementation of future ePrescribing systems. Methods: A mixed methods study of concurrent design was conducted. Interviews with healthcare professionals primarily aimed to evaluate processes and identify areas requiring improvement within the current paper-based workflow for systemic anti-cancer therapy prescribing. An online questionnaire adapted from the Information Systems Expectations and Experiences tool primarily aimed to capture expectations of the new ePrescribing system and attitudes towards the transition. Results: Twelve healthcare professionals were interviewed, and 50 healthcare professionals responded to the online questionnaire (response rate: 33.3%). Eight major themes emerged from interview transcripts relating to opinions on the paper-based workflow. Questionnaire respondents reported positive attitudes towards ePrescribing implementation and had high expectations for workflow improvements and functionalities of the new system. Seven recommendations for ePrescribing implementation were developed: (1) prioritise specific processes; (2) plan for changes in communication; (3) repeat research in the post-implementation setting; (4) ensure good information technology infrastructure and system support; (5) ensure optimum training; (6) outline limitations of clinical decision support; (7) provide clear instructions on local configurability. Conclusion: This study identifies potential challenges in transitioning to ePrescribing and provides recommendations, which assist stakeholders in ensuring safe and effective transitions, thus informing future ePrescribing systems' implementation in haematology/oncology settings. [ABSTRACT FROM AUTHOR]

Following the onset of the COVID-19 pandemic, Israel established a number of 'corona hotels' – hybrid spaces that were neither fully treatment-oriented nor fully incarcerational, in which people known or suspected to be infected with the coronavirus were confined, sometimes for prolonged and indefinite periods. This paper describes the experience of 25 people who were confined in corona recovery and isolation hotels between March and July 2020. The corona hotels exemplify how remote medical technology and digital medicine together enable a new 'technogeography of care', where care and abandonment are inextricably linked. The paper adds to the growing number of critical studies on digital health by showing how the employed technologies impact the concepts of human embodiment, subjectivity and social relations, as well as how the occupants negotiated the meaning of these technologies and resisted their effects. [ABSTRACT FROM AUTHOR]

This paper argues that trust cannot be taken for granted in long-term participatory research and promotes greater consideration to conceptualizing the trusting process as fluid and fragile. This awareness by researchers can reveal to them how the passing of time shapes and reshapes the nature of trusting relationships and their constant negotiation and re-negotiation. The paper draws together literature from different disciplines on the themes of trust, temporality and participatory research and outcomes from interviews and workshops undertaken for The Trust Map project to focus on two key moments that reveal the fragility of trust. These are the subtlety of disruption and trust on trial and trust at a distance. We discuss how trust was built over time through processes of interaction that were continually tested, incremental and participatory. [ABSTRACT FROM AUTHOR]

The purpose of this paper is to explain and describe the use of presuppositional interviews as means of the researcher being able to expose their own, often unknown, assumptions about the phenomena of interest. Within this, we provide a philosophical and practical account for the development and use of a presuppositional interview from an insider perspective to expose insights which influence researcher reflexivity and directly impact on the research process. Author A's hermeneutic phenomenological study seeks to gain insights into the lived experience of children learning mathematics in outdoor environments, such as forests and woodland. The paper describes how the reflexive method of presuppositional interviewing helped him to understand more about his research position and find a clearing in his 'Being in the Wood.' A template for a presupposition interview schedule is presented. [ABSTRACT FROM AUTHOR]

International labor migration impacts gender relations between migrant workers and their families. Social workers need a more nuanced understanding of the gendered aspects of international migration for developing ethical social work practices and research. This article discusses morphing gender relations of power within the family context. The data presented in this paper originated from conversational interviews that were conducted in Tajikistan and Russia. Using social constructivism and intersectionality as the main theoretical approaches, this paper illustrates how male–male, male–female, and female–female gender relations are constantly negotiated and renegotiated within the family in the midst of labor mobility. This distinct understanding is critical for social workers who work with migrant workers and their families both locally and globally. [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]

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]

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 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]

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: The Hearing Voices Approach, a community-based peer-led support group model, is generating interest as a novel way to engage with psychosis. Hearing Voices (HV) groups are run by peers, 'experts-by-experience', and emphasize group ownership and community-building rather than adherence to a therapist-led, predetermined structure. Diverse beliefs about experiences are respected and viewed as potentially meaningful. Groups work within each individual's explanatory framework to reframe understandings. Aims: This paper describes the effects of participation in Veteran Voices and Visions (VVV) groups, an adaptation of the HV approach, co-led by clinicians and Veteran peer support specialists, adapted for Veterans who have experienced psychosis and receive care at the VA, a large public health system in the United States. Method: This mixed methods pilot study has a convergent parallel design, integrating quantitative and qualitative data from participants in pre-intervention and post-intervention assessments. Results: Over 16 weeks, quantitative analysis showed a statistically significant reduction in distress, due to auditory hallucinations, as measured by the Psychotic Symptom Rating Scales (PSYRATS). The Beliefs about Voices Questionnaire- Revised (BAVQ-R) results showed a reduction in malevolence and omnipotence and an increase in benevolence related to auditory hallucinations, but no change in resistance. Engagement showed a trend-level reduction. Qualitative data from midpoint (Week 8) and endpoint (Week 16) interviews revealed several perceived benefits from groups: 1) normalization and camaraderie, 2) increased hope and confidence, 3) self-understanding and reframing of experiences, and 4) building relationships outside of groups. Overall, VVV groups reduced distress due to voices, negative beliefs about voices, and perceived power of voices. Conclusions: Study findings contribute to a growing body of literature indicating HV groups support those who have experienced psychosis by reducing social isolation and fostering community, which may facilitate social integration. Overall, our findings highlight the potential benefits of adapting HV groups to health systems. [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]

The way social workers discursively construct 'service user' identities in everyday interactions (interviews, conversations and text) can affect quality of relationships and practice outcomes. Even though research has focused on the construction of 'service user' identities by professionals and service users, little has been done to explore such discursive formulations by pre-qualifying social work students. This is especially relevant, given the strengthening of the 'expert by experience' identity in social work education. This paper seeks to make visible mechanisms of student identity constructions as to 'who a service user is', and implications for practice through the examination of student written work pre- and post- a module focussing on lived experience. A critical discursive psychology approach was followed, recognising the interplay between localised professional encounters and wider contexts of power relations. The findings show a shift in the 'service user' identities employed by the students mainly based on individualistic discourses and deserving/undeserving themes (substance misuse the result of vulnerability, rather than selfishness, domestic abuse narratives denoting resilience rather than victimhood). The effect to practice showed shifts between the reflective, expert, person-centred and critical/radical practitioner, mainly stressing the need for professional growth at an individual level, with less emphasis on addressing social inequality. The paper argues that predominantly individualistic discourses can perpetuate de-politicised or oppressive categorisations of 'service users' and calls for further critical engagement with the discursive micro-practises enacted and developed in the social work classroom, if we are to unveil and challenge narrow, or stigmatising categorisations early on. [ABSTRACT FROM AUTHOR]

This article explores how solicited paper diaries, and the accompanying materials, are carefully handled over the course of one research project. It foregrounds the value of attending to mundane moments with research materials, by tracing tangible material encounters together with intimate fieldnote reflections. Through drawing upon theories of materiality with feminist and relational ethics of care, this article centralises paper diaries as a key mediator of relationships and care within research. It considers the micro processes of choosing diaries, posting them, receiving and storing them and tracing the emotionally charged moments as a researcher in everyday research situations. Such reflections, from the perspective of the researcher, look to offer insights into research relationalities and care. It argues that these momentary fieldwork reflections extend understandings of material methodologies by emphasising relational intimacies as a researcher and connects material and sensory understandings with feminist ethics of care and researcher reciprocities. [ABSTRACT FROM AUTHOR]

Background: The existing literature on sexuality and intimacy in residential care tends to focus on either the question of rights, or the value of autonomy. Where the literature does reference values other than autonomy, such values are considered in the context of being a guide to whether or not a resident is autonomous, rather than being important values in their own right. Objective: This paper draws on qualitative data gathered as part of a larger study in order to inform practice on how care workers respond to intimacy issues that arise with residents with dementia and to inform a general ethics of sex and sexuality, demonstrating that an approach which permits value pluralism can be appropriate in certain contexts. Research Design: The qualitative data referred to in this paper was gathered from semi-structured interviews undertaken as part of a larger mixed-method research project. The interview text was analysed using Thorne's methodological approach, interpretive description. Participants and research context: The qualitative arm of the project consisted of semi-structured interviews conducted between October 2018 and October 2019 with participants (staff, residents and family members) recruited from 35 residential care homes in Aotearoa New Zealand. Ethical Considerations: Participation was informed, voluntary and written consent was gained before interviews. The project was approved by the Massey University Human Ethics Committee (Northern), number NOR 18/25. Findings: Analysis of the scenarios presented in this paper shows that decision-making around sexual intimacy involving people with dementia in a residential care setting is complex and requires recognizing and weighing the different values that may be a in play. Conclusion: A focus on safety and consent to the exclusion of other values which matter morally in this context is a mistake which prevents care workers from providing appropriately person-centred care to residents, as policies which focus on the goal of care allow space for critical examination of issues which are likely to be highly context-sensitive. [ABSTRACT FROM AUTHOR]

Objectives: Incorporating the perspectives of patients and public into the conduct of research has the potential to make scientific research more democratic. This paper explores how being a patient partner on an arthritis patient advisory board shapes the patienthood of a person living with arthritis. Methods: An analysis was undertaken of the narratives of 22 patient research partners interviewed about their experiences on the Arthritis Patient Advisory Board (APAB), based in Vancouver, Canada. Results: Participants' motivations to become involved in APAB stemmed largely from their desire to change their relationship with their condition. APAB was a living collective project in which participants invested their hope, both for their own lives as patients and for others with the disease. Conclusions: Our findings highlight how the journeys of patient partners connect and integrate seemingly disparate conceptions of what it means to be a patient. One's experience as a clinical 'patient' transforms into the broader notion of civic patienthood. [ABSTRACT FROM AUTHOR]