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Background: Telephone advice lines have been recommended internationally to support around-the-clock care for people living at home with advanced illness. While they undoubtedly support care, there is little evidence about what elements are needed for success. A national picture is needed to understand, improve and standardise service delivery/care. Aim: To explore telephone advice lines for people living at home with advanced illness across the four UK nations, and to construct a practical framework to improve services. Design: A cross-national evaluation of telephone advice lines using structured qualitative interviews. A patient and public involvement workshop was conducted to refine the framework. Setting/participants: Professionals with responsibilities for how palliative care services are delivered and/or funded at a local or regional level, were purposively sampled. Results: Seventy-one interviews were conducted, covering 60 geographical areas. Five themes were identified. Availability : Ten advice line models were described. Variation led to confusion about who to call and when. Accessibility, awareness and promotion : It was assumed that patients/carers know who to call out-of-hours, but often they did not. Practicalities : Call handlers skills/expertise varied, which influenced how calls were managed. Possible responses ranged from signposting to organising home visits. Integration/continuity of care : Integration between care providers was limited by electronic medical records access/information sharing. Service structure/commissioning : Sustained funding was often an issue for charitably funded organisations. Conclusions: Our novel evidence-based practical framework could be transformative for service design/delivery, as it presents key considerations relating to the various elements of advice lines that may impact on the patient/carer experience. [ABSTRACT FROM AUTHOR]

Sexual assault is a global problem, with the risk highest among university students. Bystander intervention preventing sexual assaults has primarily been researched using quantitative methods to understand what factors influence it. However, both sexual assault and bystander intervention are complex with many subtle and overlapping issues that, when analyzed qualitatively, can offer new insights. The current study aimed to explore and develop a nuanced and comprehensive understanding of students' perceptions of sexual assault and bystander intervention across two universities, one in the United Kingdom and one in Australia. Thirty-nine university students (19 in the United Kingdom; 20 in Australia) took part in one-to-one semistructured interviews. Using inductive thematic analysis, two overarching themes were identified: (a) navigating the complex dynamics of sexual assault; and (b) decisions to intervene or not to intervene. Findings suggest that the complexity and ambiguity around sexual assault can forestall bystander intervention. As such, increasing education, awareness, and discussions around sexual assault and bystander intervention is vital to increase awareness of the problem and mobilize action from bystanders to prevent sexual assault. [ABSTRACT FROM AUTHOR]

Secondary trauma arises through indirect exposure to trauma through engaging with first-hand accounts and narratives of traumatic events. While a significant amount of research has explored secondary trauma experienced by professionals who work with survivors of trauma, such as clinicians and front-line service providers, there is little research exploring the experiences of secondary trauma among violence researchers who routinely engage with traumatic first-hand accounts through their work. This study qualitatively explored violence researcher's professional experiences of secondary trauma and their perceptions of what enables and constrains their own coping and resilience. Participants were recruited using purposive sampling methods. Semi-structured interviews were conducted online with seven female violence researchers from the United Kingdom. Questions explored participant's experiences of secondary trauma symptoms related to their research, perceptions of their own coping and resilience, and experiences of organizational support that have enabled or constrained their resilience. Data were analyzed thematically using a coding framework applied reflexively across interview transcripts. All participants reported experiencing symptoms of secondary trauma from their work including cognitive disturbances; altered beliefs of themselves, others or the world; and challenges connecting with others. Participants' assessment of their own expertise in violence research did not generally impact their perception of their own resilience. Organizational support for violence researchers was rarely provided and participants felt generally unsupported—left to manage any resultant distress alone. Research organizations and universities should implement trauma-informed policies which positively transform workplace culture, provide peer support spaces, and conduct effective training in order to mitigate psychological harm and promote resilience among violence researchers. Support should be tailored to the requirements of violence researchers, and institutions should develop policies that are specifically attentive to the needs of researchers who also have lived experience of violence and abuse. [ABSTRACT FROM AUTHOR]

There is a lack of research concerning therapists' emotional responses to the suicide of clients and/or friends and family and yet, professionally, therapists commonly manage suicide risk of their clients and need to abide by relevant policies. Using a purposive sampling technique, twelve female clinical psychologists working in the UK were recruited via social media platforms. A qualitative method was adopted to offer an in-depth understanding into the lived experiences of losing a loved one and/or client to suicide. The semi-structured interviews took place via video-call or via telephone for up to one hour. Three themes were identified as follows: how talk is experienced as a way of making sense of suicide the messiness of being human,and an experience that helps psychologists face suicide. This study brings to light the dilemmas experienced by clinical psychologists who are both clinicians and survivors of suicide. The findings highlight the lack of conversation relating to bereavement by suicide within mental health services. This study offers insight into how clinical psychologists experience suicide bereavement, and discusses the clinical and UK policy implications. [ABSTRACT FROM AUTHOR]

Instability in the lives of young people in care is a public health concern. Placement moves and loss of relationships can have serious implications for young people's overall functioning, as well as their future life outcomes. Despite this, research often lacks the perspective and voice of young people in care. In this qualitative research, Interpretative Phenomenological Analysis was used to provide a deeper insight into young people's perceptions and beliefs about their care experiences to explore the impact of these on their ability to achieve a sense of stability and permanency across time. Semi-structured interviews were conducted with six males from UK foster, residential and semi-independent care homes. The main themes highlighted young people's perceptions of their care environment, relationships with others, sense of self and future under the overarching issue of permanence. Policy and practice implications propose strategies to target instability at the micro-level and how that may facilitate positive outcomes. The study revealed insights that may be helpful for frontline professionals and highlight to policy makers the importance of ensuring environmental and relational stability. An awareness of attachment theory to implement effective caregiving, should be a priority for training parents, caregivers, professionals and policy makers. [ABSTRACT FROM AUTHOR]

Background: Young men with Duchenne Muscular Dystrophy benefit from palliative care that supports their psychosocial needs. Acknowledging the sub-cultures they engage with can support their wellbeing. Anecdotal reports suggest video gaming is a sub-culture engaged with by young men with Duchenne Muscular Dystrophy. Aim: To explore the lived experience of video gaming from the perspective of young men with Duchenne Muscular Dystrophy. Design: Interpretative Phenomenological Analysis approach involving in-depth interviews using a topic guide that focused on social media broadly, with reference to video gaming. Sequential interviewing was undertaken to support participation regarding fatigue and tiredness, symptoms of Duchenne Muscular Dystrophy. Setting/participants: Participants were purposefully recruited from a hospice in the North of England. Twitter was used to support recruitment. Eight young men with Duchenne Muscular Dystrophy were recruited to the study. Results: Five themes were developed; 'gamer as a shared and accepted identity', 'an existential and bodily escapism', 'introspection through video gaming', 'video gaming as a release' and 'when life gives you few choices-video game'. Motivations for engagement with video gaming are diverse and reflective of the situated perspectives of young men with Duchenne Muscular Dystrophy. Conclusions: An awareness of the popular sub-cultures that young men with Duchenne Muscular Dystrophy engage with is key to building a therapeutic alliance, establishing rapport and recognising personhood in interactions between professionals and persons in palliative care settings. This study highlights the value of video gaming, offering professionals valuable insight into its placement in the daily lives of young men with Duchenne Muscular Dystrophy. [ABSTRACT FROM AUTHOR]

Background: Despite being a core domain of palliative care, primary data on spiritual and existential concerns has rarely been collected among children with life-limiting and life-threatening conditions and their families. Existing evidence has tended to focus on the religious aspects among children with cancer. Aim: To identify the spiritual needs of children with life-limiting and life-threatening conditions. Design: Cross-sectional semi-structured, qualitative interview study with children, families and health and social care professionals. Verbatim transcripts were analysed using Framework analysis Setting/participants: Purposively sampled children with life-limiting and life-threatening conditions, their parents and siblings, health and social care professionals recruited from six hospitals and three children's hospices in the UK, and commissioners of paediatric palliative care services recruited through networks and a national charity. Results: One hundred six participants were interviewed: 26 children (5–17 years), 53 family members (parents/carers of children 0–17 years and siblings (5–17 years)), 27 professionals (health and social care professionals and commissioners of paediatric palliative care). Themes included: living life to the fullest, meaning of life and leaving a legacy, uncertainty about the future, determination to survive, accepting or fighting the future and role of religion. Children as young as 5 years old identified needs or concerns in the spiritual domain of care. Conclusions: Addressing spiritual concerns is essential to providing child- and family-centred palliative care. Eliciting spiritual concerns may enable health and social care professionals to identify the things that can support and enhance a meaningful life and legacy for children and their families. [ABSTRACT FROM AUTHOR]

Abdominal surgery carries with it risks of complications. Little is known about patients' experiences of post-surgical deterioration. There is a real need to understand the psychosocial as well as the biological aspects of deterioration in order to improve care and outcomes for patients. Drawing on in-depth interviews with seven abdominal surgery survivors, we present an idiographic account of participants' experiences, situating their contribution to safety within their personal lived experiences and meaning-making of these episodes of deterioration. Our analysis reveals an overarching group experiential theme of vulnerability in relation to participants' experiences of complications after abdominal surgery. This encapsulates the uncertainty of the situation all the participants found themselves in, and the nature and seriousness of their health conditions. The extent of participants' vulnerability is revealed by detailing how they made sense of their experience, how they negotiated feelings of (un)safety drawing on their relationships with family and staff and the legacy of feelings they were left with when their expectations of care (care as imagined) did not meet the reality of their experiences (care as received). The participants' experiences highlight the power imbalance between patients and professionals in terms of whose knowledge counts within the hospital context. The study reveals the potential for epistemic injustice to arise when patients' concerns are ignored or dismissed. Our data has implications for designing strategies to enable escalation of care, both in terms of supporting staff to deliver compassionate care, and in strengthening patient and family involvement in rescue processes. [ABSTRACT FROM AUTHOR]

This article explores the experiences of young adults with a life-shortening condition in the first wave of the Coronavirus (COVID-19) pandemic in the UK. It presents the findings from an inclusive qualitative research study using constructivist grounded theory which aimed to examine the unintended consequences of pandemic control measures (lockdown and 'shielding') on this population. Purposive and theoretical sampling methods were used to recruit young adults with a life-shortening condition, employing a range of recruitment methods such as social media, advertising in newsletters and snowballing. Twenty-six young adults (aged 22–40 years), with a wide range of life-shortening conditions participated in the study. Seventeen participants were female and nine male. The majority identified as White British/Other and the remainder as Black British (2), Mixed Race (2) or Latin American (1). Data were generated iteratively using in-depth guided interviews and analysed collectively by an inclusive research team using the constant comparative method. The article explores a theory of embodied precariousness of living with a life-shortening condition during the first wave of the Coronavirus pandemic in relation to three categories: the rationing of life-saving treatment, the deterioration of health and retraction of healthcare provision, and the disruption of typical care arrangements. The findings show that the pandemic control measures introduced to keep people safe have intensified the precarity of this group promoting inequalities in healthcare and health outcomes. The article identifies some implications for practice to support the future management of unexpected and unwanted change. [ABSTRACT FROM AUTHOR]

Background: Informed consent prior to nursing care procedures is an established principle which acknowledges the right of the patient to authorise what is done to him or her; consent prior to nursing care should not be assumed. Nursing care procedures have the potential to be unwanted by the patient and hence require an appropriate form of authorisation that takes into consideration the relationship between the nurse and patient and the ongoing nature of care delivery. Research question: How do nurses obtain consent from patients prior to nursing care?. Design: Critical incident technique and the collection of critical happenings. Participants: 17 participants who were all qualified nurses took part in in-depth interviews Ethical considerations: Ethical approval was obtained from the university ethics committee. Findings: Information giving is a key component prior to nursing care procedures. Nurses provide information to patients as a routine aspect of care delivery, and do so even when the patient is unable to communicate themselves. Whilst some participants described how information giving might be rushed or overlooked at times, it is clearly an established part of nursing care and is provided to ensure the patient knows what to expect when care is delivered. What is less clear is the extent to which information is given in order to seek the consent – rather than merely inform the patient – about nursing care. Conclusion: Implied consent is often an appropriate way in which consent is obtained prior to nursing care procedures. It takes into account the ongoing care provision and the relationship that exists between the nurse and patient. However implied consent should not be assumed. Nurses need to ensure that information is given not only to inform the patient about a procedure but to enable the patient to give his or her consent and to find an alternative way forward if the patient withholds their consent. [ABSTRACT FROM AUTHOR]

This study employs a qualitative phenomenological exploration of the "lived" experiences of male intimate partner stalking (IPS) perpetrators serving a custodial sentence in the United Kingdom for an offense related to intimate partner violence (IPV). The purpose of this study is to capture the nature and complexity of the experiences of the pathway to IPS from the perspective of the perpetrator. The study seeks to provide a unique understanding of how IPS perpetrators attribute meaning to their behavior, illuminating the underpinning cognitive characteristics and emotions that play a role in their behavior. Semi-structured interviews were conducted with seven men with a history of IPS behavior. The resultant transcripts were analyzed using interpretative phenomenological analysis (IPA). Five superordinate themes reflecting participants' experiences were identified: (a) "The quest for attention and affection creating connection,"(b) "Conflicted identity and extremes of self," (c) "My life, a film set," (d) "Gameplaying: One step ahead," and (e) "Severed connections, changing the Gameplay." The findings are presented in relation to the existing literature and theoretical frameworks which seek to explain stalking perpetration. The analysis provides a greater understanding of men who have engaged in IPS behavior, demonstrating how hearing the perspective of the perpetrator has value in informing theory and intervention. The study has provided valuable insight into the cognitive characteristics of this population and a rich understanding of the profiles of men who have engaged in IPS behavior. Implications for forensic practice, policy, and research are outlined, and recommendations for future research and overall limitations are discussed. [ABSTRACT FROM AUTHOR]

The aim of this study was to explore the lived experience of interstitial cystitis (IC)/painful bladder syndrome (PBS). A phenomenological approach with emphasis on reflection and openness was adopted. Twenty women diagnosed with IC an average of nine years prior to data collection produced a written account of their experiences. The textual data was analyzed using thematic analysis. Four themes were derived from data analysis: diagnostic uncertainty; restrictions and limitations on life; self-management; and interpersonal relationships and social support. Women reported issues in receiving a diagnosis of IC, undergoing numerous diagnostic tests, and experiencing multiple referrals. Having undergone numerous treatments with limited success, women sought information and management strategies outside of standard medical care and reported a negative impact on sexual and social relationships. The findings illustrate the complex nature of women's experiences and the physical and psychological impacts and effects of IC/PBS on women's daily lives. [ABSTRACT FROM AUTHOR]

Background: The population of frail elders is growing, and due to their vulnerability to sudden deterioration, advance care planning is particularly important. However, advance care planning is uncommon for multiple reasons, some of which are linked to the perceptions of frail elders and their families. Aim: To explore the barriers and enablers to advance care planning engagement with frail elders. Design: Qualitative in-depth interviews with thematic analysis. Setting/participants: Purposive sample of 10 frail elders and 8 nominated family members using a community-based older persons' service run by a large urban UK hospice. Frail elders had capacity, were ⩾65 (median 85, range 71–95), scored 6 or 7 (median 6.5) on the Clinical Frailty Scale, and 70% were female. Results: Key barriers were: Advance care planning is unclear, in terms of meaning and the language used; Lack of relevance, with frail elders preferring to focus on living well now; and the Importance of family, relationships and home, and the influence of relationship on end of life decision-making. Engagement strategies included preparing the frail elder for advance care planning conversations and using a gentle, honest, individualised approach. Conclusions: Essential enablers for frail elders are understanding what advance care planning is and why it may be relevant to them. For professionals, enablers include recognising the importance of living well now and relational decision-making. To further support advance care planning, recommendations include early engagement and re-conceptualising advance care planning as an ongoing process which encompasses current and future care. Further research is needed in different cultures and care contexts. [ABSTRACT FROM AUTHOR]

This article considers the ideology surrounding 'good mother' expectations for mothers from British, lower socio-economic classes who have involvement from children's services due to their (ex) partners' violent behaviour. What was expected from 'good mothers' historically and currently is considered, before specific attention is paid to the expectations set for mothers who are known to children's services. The research aims were to understand what these mothers themselves consider a 'good mother' to be. Fifteen mothers from the UK who had had involvement with Children's Services were interviewed; all participants defined themselves as working class and their ages ranged from 20 to 48. The majority of participants defined their ethnicity as white, with two participants choosing 'mixed'. Data were reviewed thematically and five main themes arose. This article explores that, whilst some mothers feel able to re-work the expectations placed on them to make them fit with their daily lives, this was not true for the majority of the participants within this study. [ABSTRACT FROM AUTHOR]

Congenital facial palsy is a rare medical condition that causes paralysis of the facial muscles, lack of facial expression, and an unusual appearance. Findings from developmental psychology suggest that the face plays a central role in the construction of self. Semi-structured interviews were conducted with 14 adults born with congenital facial palsy. Participant's constructions of self across the life span were explored and a grounded theory of this process was constructed. Theoretical sampling was conducted with two parents of children born with the condition. All participants reported "struggling to make connections," "experiencing invalidation," and "struggling to regulate affect," which lead to "constructing a defective sense of self." Alternatively, "making validating connections" facilitated the process of "constructing a validated sense of self." This study provides insight into the unique social and emotional challenges often experienced by those born with congenital facial palsy and highlights the need for early psychosocial intervention. [ABSTRACT FROM AUTHOR]

Psychological problems are common among people with inflammatory bowel disease (IBD) following stoma surgery. However, the ways in which stoma-related psychological needs are identified and addressed in health care settings remain unexplored. In this study, we investigated the perspectives of young people with a stoma and health care professionals about access to psychological support. Semi-structured interviews were conducted with young people with an IBD stoma (18–29 years, n = 13) and health care professionals (n = 15), including colorectal surgeons, gastroenterologists, specialist nurses in IBD and stoma care, and general practitioners in England. Data collection and analysis were informed by constructivist grounded theory. Three analytic categories were developed: "initiating support-seeking," "affirming psychological needs," and "mobilizing psychological support," which capture young peoples' trajectory to access psychological support. Based on the findings, we highlight the need for both patients and health care professionals to assign greater priority to the identification of psychological symptoms post-stoma surgery. More effective care pathways, which include responsive psychological services, would enhance access to psychological support for young people with a stoma. [ABSTRACT FROM AUTHOR]

Public and patient involvement (PPI)—engaging the public in designing and delivering research—is increasingly expected in health research, reflecting recognition of the value of "lay" knowledge of illness and/or caring for informing research. Despite increased understanding of PPI experiences within the research process, little attention has been paid to the meaning of PPI in other areas of contributors' lives, and its value as a broader social practice. We conducted repeated narrative interviews with five experienced PPI contributors from the United Kingdom to explore how meaning is constructed through narratives of PPI in relation to their broader "life-worlds." Narratives were extremely varied, constructing identities and meanings around PPI in relation to family and social life, career and employment, financial status, and wider social agendas, as well as health. This emphasizes the importance of recognizing PPI as a social practice with diverse meaning and value beyond health research. [ABSTRACT FROM AUTHOR]

Background: End-of-life doulas are emerging as a potentially important new form of community-based caregiving in the global North, yet we know little about this form of care. The aim of our study was to solicit the perspective of key stakeholders and early innovators in community-based end-of-life care about the development and practices of end-of-life doulas. Methods: We conducted 22 semi-structured interviews with participants in four countries where end-of-life doulas are most active: Australia, Canada, the United States, and the United Kingdom. Findings: This article focuses on participants' description of the end-of-life doula role and attendant practices, and our findings provide the first detailed taxonomy of the end-of-life doula role and specific services on the basis of the perspective of subject experts in four countries. We situate our findings within literature on the professionalization of caregiving, with particular attention to nomenclature, role flexibility and boundary blurring, and explicit versus tacit knowledge. We also discuss the importance of jurisdictional considerations as the end-of-life doula movement develops. Discussion: We speculate that the end-of-life doula role is potentially experiencing common developmental antecedents similar to other now-professionalized forms of caregiving. Our findings contribute substantial new information to the small body of empirical research about the end-of-life doula role and practices, provide critical firsthand insight as the movement develops, and are the first research to explore end-of-life doulas from a comparative international perspective. [ABSTRACT FROM AUTHOR]

The objectives of this research were to extend previous research by exploring the psychosocial experiences of patients over the first year after major lower limb amputation (MLLA) and identify implications for rehabilitation practice. This research took place at a United Kingdom–based National Health Service–operated prosthetic rehabilitation center. Thirty patients were recruited who had experienced MLLA within the last year and were undertaking prosthetic rehabilitation. Data were collected through semi-structured narrative interviews, observation, and a reflexive journal and analyzed using dialogical narrative analysis. The concept of well-being was used to map patients' recovery trajectories, and five narrative typologies were identified: accelerated decline, adaptation, illusory cure, muddling along, and projection. This article advances knowledge by opening up new possibilities for anticipating patients' future needs through the stories they are telling in the present and provides the basis for additional resources supporting psychosocial recovery. [ABSTRACT FROM AUTHOR]

Postnatal care is the aspect of maternity care with which women in England are least satisfied. Little is known about first-time mothers' expectations of postnatal care, or how these expectations relate to their experiences and appraisal of care. Thirty-two first-time mothers took part in a longitudinal qualitative descriptive study, based on two semi-structured interviews—the first in pregnancy, and the second 2 to 3 months after birth. Trajectory analysis was used to identify the thematic patterns in the relationships between postnatal care expectations, needs, experiences, and confidence. Five trajectories were identified, showing that mothers' satisfaction with postnatal care and confidence were primarily influenced not by the extent to which their expectations were met but the varied extent to which their individual postnatal needs were met. Rapid and responsive assessment of needs both antenatally and postnatally, and appropriate adjustment of care, is key in supporting women effectively at this time. [ABSTRACT FROM AUTHOR]

Our article explores orthorexia nervosa (ON)—an extreme fixation with healthy eating—from a social construction perspective. Interviews with people self-identified as "obsessed" with healthy eating or having ON ("Identifiers") and nonmedical professionals working with ON ("Professionals") were comparatively analyzed, along with orthorexia threads from an eating disorder website ("Posters"). Participants made sense of and rationalized their attitudes and feelings concerning healthy eating and aligned themselves according to their interests. Identifiers and Posters applauded "healthy eating" and regarded consumption of "impure" foods as leading to ill-health. Some framed their dietary discipline within an ethically motivated lifestyle, while others were preoccupied with appearance or weight management. Professionals expressed concern for, and disapproval of, extreme views and behaviors in clients and parental and social influences supporting them. Debates surrounding orthorexic practices are tangled; some individuals need help, yet dangers lie in over medicalizing or "troubling" what may be a preferred lifestyle. [ABSTRACT FROM AUTHOR]

Intimate partner violence (IPV) is a major social and public health problem affecting people from different cultures and societies. Much research has been undertaken to understand the phenomenon, its determinants, and its consequences in numerous countries. However, there is a paucity of research on IPV in many areas of the world including Pakistan. The present study aimed to develop a theory of the meaning and process of IPV from the perspective of Pakistani men and women living in and outside Pakistan. [ABSTRACT FROM AUTHOR]

Background: Palliative care is acknowledged as an appropriate approach to support older people in nursing homes. Ethical issues arise from many aspects of palliative care provision in nursing homes; however, they have not been investigated in this context. Aim: To explore the ethical issues associated with palliative care in nursing homes in the United Kingdom. Design: Exploratory, sequential, mixed-methods design. Methods: Semi-structured interviews with 13 registered nurses and 10 healthcare assistants (HCAs) working in 13 nursing homes in the United Kingdom were used to explore ethical issues in palliative care. The 'Ethical Issues in Palliative Care for Nursing Homes' instrument was used to measure the frequency and level of distress arising from ethical issues through a cross-sectional survey with 69 registered nurses and 129 healthcare assistants. Data collection occurred between December 2014 and November 2015. Ethical considerations: Ethical approval was granted by Queen's University's School of Nursing and Midwifery Research Ethics Committee and governance sought from each nursing home's manager. Findings: The interviews revealed three themes: ethical issues in practice; relational issues; and organisational issues. No significant differences between registered nurses and healthcare assistants were evident, confirming the patterns emerging from the interviews. Relational issues, primarily issues with residents and families, occurred most frequently and caused greater distress. Conclusion: The shared environment is key in the experience of ethical issues; therefore, multidisciplinary education is needed for ethical decision making in palliative care. Addressing staff knowledge and service organisation may reduce ethical issues locally and provide a benchmark for global change. [ABSTRACT FROM AUTHOR]

The Universities UK (UUK) Taskforce report, Changing the Culture, has been seen as a turning point in U.K. universities' responses to gender-based violence (GBV). Institutional changes have occurred as a response to grassroots feminist activism and resistance to GBV, focusing on sexual violence, harassment, and "lad culture" in universities. This article will argue that the neoliberal marketization of higher education, concurrent with the persistence of misogyny and patriarchy, creates an environment where GBV is normalized, and feminist voices are marginalized and silenced. Interviews with academics show support for victims/survivors on campus often falls to particular academic staff. When initiatives for change, led by institutional management, are limited to protecting the "reputation" of the university, it furthermore falls on academics to challenge not only GBV, but also the reactive and uncritical responses offered by institutions. We contend that national, institutional, and individual responses to GBV must consider the meaning of "cultural change" beyond policy reform, zero tolerance campaigns, and condemnation of GBV. Attempts to enact true cultural change must analyze the broader issue of sexism, its intersections with further structural issues, and the ways in which this plays out within the neoliberal institution to the detriment of students and staff. [ABSTRACT FROM AUTHOR]

Websites advocating the benefits of eating disorders ("Pro-Ana") tend to reinforce and maintain restrictive eating and purging behaviors. Yet remarkably, no study has explored individual accounts of disengagement from these sites and the associated meanings. Using narrative inquiry, this study sought to address this gap. From the interviews of six women, two overarching storylines emerged. The first closely tied disengagement to recovery with varying positions of personal agency claimed: this ranged from enforced and unwelcomed breaks that ignited change, to a personal choice that became viable through the development of alternative social and personal identities. A strong counternarrative to "disengagement as recovery" also emerged. Here, disengagement from Pro-Ana was storied alongside a need to retain an ED lifestyle. With "recovery" being just one reason for withdrawal from Pro-Ana sites, clinicians must remain curious about the meanings individuals ascribe to this act, without assuming it represents a step toward recovery. [ABSTRACT FROM AUTHOR]

This article explores how six Pakistani Muslim women interpret cultural concepts of izzat (honor and self-respect); what role, if any, it has in their lives; and whether there is interplay between upholding izzat and the participants' help-seeking strategies for mental health and well-being. Semistructured interviews were conducted and analyzed with an interpretative phenomenological analytic framework. Three themes were identified: (a) "the rules of izzat," (b) "negotiating tensions," and (c) "speaking out/breaking the 'rules.'" Findings highlighted new insights into the understanding of izzat and the implications these cultural concepts have for strategies in managing or silencing of psychological distress. Interviews illustrated tensions the participants experience when considering izzat, how these are negotiated to enable them to self-manage or seek help, and possible life experiences that might lead to self-harm and attempted suicide. Notably, cultural codes, in particular izzat, appear to vary over the life course and are influenced by migration. [ABSTRACT FROM AUTHOR]

Objective: To examine the feasibility of a trial to evaluate web-based physiotherapy compared to a standard home exercise programme in people with multiple sclerosis. Design: Multi-centre, randomized controlled, feasibility study. Setting: Three multiple sclerosis out-patient centres. Participants: A total of 90 people with multiple sclerosis (Expanded Disability Status Scale 4–6.5). Interventions: Participants were randomized to a six-month individualized, home exercise programme delivered via web-based physiotherapy (n = 45; intervention) or a sheet of exercises (n = 45; active comparator). Outcome measures: Outcome measures (0, three, six and nine months) included adherence, two-minute walk test, 25 foot walk, Berg Balance Scale, physical activity and healthcare resource use. Interviews were undertaken with 24 participants and 3 physiotherapists. Results: Almost 25% of people approached agreed to take part. No intervention-related adverse events were recorded. Adherence was 40%–63% and 53%–71% in the intervention and comparator groups. There was no difference in the two-minute walk test between groups at baseline (Intervention-80.4(33.91)m, Comparator-70.6(31.20)m) and no change over time (at six-month Intervention-81.6(32.75)m, Comparator-74.8(36.16)m. There were no significant changes over time in other outcome measures except the EuroQol-5 Dimension at six months which decreased in the active comparator group. For a difference of 8(17.4)m in two-minute walk test between groups, 76 participants/group would be required (80% power, P > 0.05) for a future randomized controlled trial. Conclusion: No changes were found in the majority of outcome measures over time. This study was acceptable and feasible by participants and physiotherapists. An adequately powered study needs 160 participants. [ABSTRACT FROM AUTHOR]

Background: Withdrawal of treatment is a common practice in intensive care units when treatment is considered futile. Compassion is an important aspect of care; however, it has not been explored much within the context of treatment withdrawal in intensive care units. Objectives: The aim was to examine how concepts of compassion are framed, utilised and communicated by intensive care nurses in the context of treatment withdrawal. Design: The study employed a qualitative approach conducting secondary analysis of an original data set. In the primary study, 13 nurses were recruited from three intensive care units within a large hospital in United Kingdom. Deductive framework analysis was used to analyse the data in relation to compassionate care. Ethical considerations: The primary study was approved by the local Research Ethics Committee and the hospital's Research and Development services. Findings: Compassionate care was mostly directed to the patient's family and was demonstrated through care and emotional support to the family. It was predominantly expressed through attempts to maintain the patient's dignity by controlling symptoms, maintaining patient cleanliness and removing technical apparatus. Conclusion: This study's findings provide insight about compassionate care during treatment withdrawal which could help to understand and develop further clinicians' roles. Prioritising the family over the patient raised concerns among nurses, who motivated by compassion, may feel justified in taking measures that are in the interests of the family rather than the patient. Further work is needed to explore the ethics of this. [ABSTRACT FROM AUTHOR]

Our aim is to provide an understanding of the experience of women with inflammatory bowel disease (IBD) who have made the transition to motherhood. A total of 22 mothers with IBD were recruited from around the United Kingdom. Semi-structured interviews were conducted and analyzed using thematic analysis. The central concept—Blurred Lines—offers a novel frame for understanding the transition to motherhood with IBD through identifying parallels between having IBD and becoming, and being, a mother. Parallels clustered into three main themes: Need for Readiness, Lifestyle Changes, and Monitoring Personal and Physical Development. Hence, women with IBD are in some ways well prepared for the challenges of motherhood even though, as a group, they tend to restrict their reproductive choices. We recommend health professionals initiate conversations about reproduction early and provide a multidisciplinary approach to pregnancy and IBD in which women have confidence that their ongoing treatment will be integrated successfully with their maternity care. [ABSTRACT FROM AUTHOR]

Based on life history narratives of 57 women in India and interviews with 21 practitioners, we document the neglect, abuse, and instrumental deprivation of women’s rights through the process of transnational abandonment. While gendered local sociocultural milieus and economic norms contribute to these harms, they are crucially enabled and sustained by transnational formal-legal frameworks. Widening the explanatory lens for understanding domestic violence beyond the family and community, we argue that in a globalized world, (inter)state policies serve to construct these women as a subordinate category of citizens—“disposable women”—who can be abused and abandoned with impunity. [ABSTRACT FROM AUTHOR]

Summary The research activity of social work academics in the UK has been of interest and concern amongst academics and research funders. Multiple initiatives have been implemented to develop social work research activity, yet research by social work academics remains limited, hindered by lack of time, support infrastructures, funding and training. Through the use of a mixed-methods cross-sectional survey (N = 200) and follow-up individual interviews (N = 11), this study reports on the factors that were found to contribute to or impede the amount of time that social work academics reported spending on research. Findings The results from the survey indicated that 73% of respondents were research active. Bivariate analysis revealed that academics spent less time on research and teaching, and more time on administration than expected by their employing universities. Multivariate analysis found that less time spent on administration and teaching, more university supports, and being from a pre-1992 university predicted more time spent on research. Applications The findings indicate that the administrative burdens associated with teaching and assessment in social work education result in academics struggling to fit research into their busy lives, despite initiatives to raise the profile and productivity of social work research. Research support infrastructures and strategies should be reviewed in light of such findings. [ABSTRACT FROM AUTHOR]

Background: Some developed countries have recently changed their role in the context of international recruitment, becoming donors due to socio-economical and political factors such as recessions. This is also the case in Italy, where there has been a flow of immigrant nurses out of the country that has been documented over the past several years. In a short time, it has become a donor country to other developed European countries, such as the United Kingdom. Aims: To advance knowledge in the context of human rights conflicts and ethical implications of the decision-making process of nurses who migrate between developed countries, such as from Italy to the United Kingdom, during times of recession. Research design: A case study based on the descriptive phenomenological approach was undertaken in 2014. Participants and research context: A total of 26 Italian newly graduated nurses finding a job in the United Kingdom were interviewed via Skype and telephone. Ethical considerations: The Internal Review Board of the University approved the project. Findings: In accordance with the descriptive phenomenological approach undertaken, three main themes emerged: (1) escaping from the feeling of being refused/rejected in order to be desired, (2) perceiving themselves respected, as a person and as a nurse, in a growth project and (3) returning if the country changes its strategy regarding nurses. Discussion: Ethical implications in the context of human rights, such as autonomy of the decision, social justice and reciprocal obligation, non-maleficence and double effect, have been discussed. Conclusion: The call for investing in nurses and nurses' care in developed countries facing recession is urgent. Investing in nurses means respecting individuals and citizens who are at risk of developing health problems during the recession. [ABSTRACT FROM AUTHOR]

Background: Symptom burden is common for long-term care residents with dementia which if untreated compromises quality of life. Measurement tools can support assessment of symptoms and problems but are not widely used in long-term care settings. We developed the Integrated Palliative care Outcome Scale for Dementia derived from the Palliative care Outcome Scale, Palliative care Outcome Scale–Symptom and Integrated Palliative care Outcome Scale. Aim: To examine the content validity, acceptability and comprehension of Integrated Palliative care Outcome Scale for Dementia for routine use in long-term care settings for people with dementia and to refine Integrated Palliative care Outcome Scale for Dementia. Design: A multi-method qualitative study consisting of focus groups, semi-structured interviews and cognitive interviews. Setting/participants: Three residential long-term care settings in London, UK. Focus group and semi-structured interview participants included caregiver staff, family, general practitioners and district nurses. Caregiver staff were sampled purposively for cognitive interviews. Results: A total of 26 respondents participated in the focus groups (n = 21) or semi-structured interviews (n = 5) and 10 caregiver staff completed cognitive interviews. Additional symptoms and problems included agitation, wandering, sleep problems, communication problems and diarrhoea. Refinements or lay terms were required to improve comprehension and consistency of item response for nausea, drowsiness, delusions/hallucinations, agitation, loss of interest, communication problems and interaction. A video presentation was required to support comprehension of instructions and assessment of verbally compromised residents. Conclusion: Integrated Palliative care Outcome Scale for Dementia is a comprehensive and acceptable caregiver-reported measure to detect symptoms and problems in dementia. It is suitable for caregiver staff without professional training as it has been refined and tailored to maximise caregiver expertise, ready for further psychometric testing. [ABSTRACT FROM AUTHOR]

Background: Cone Beam Computed Tomography (CBCT), the focus of a number of radiotherapy fundraising campaigns in the mid-2000s, was introduced accompanied by a fanfare of newness and discourses of 'hope', 'inspiring clinical confidence' and 'accuracy'. The CBCT system, used in the delivery of Radiotherapy treatment, was incorporated into strategic planning priorities across the United Kingdom based on a rationale of self-evidence. During this time, the way in which the new system was discussed with patients was variable. Research objectives: The purpose of this study was to uncover how experimental practices were embedded and enacted during the use of a new technological system, specifically relating to how patients were enrolled during introductory phases of technology adoption. Research design and context: Drawing on ethnographic work and interviews with staff members in one hospital, the study examines staff discussions prior to the introduction of the Cone-Beam CT imaging system in radiotherapy. It considers how staff views were at odds with practices that occurred during the 'experimental' stages of use and how these were shared with patients. Ethical considerations: Approval was obtained from the Local National Health Service Research Ethics Committee and National Health Service Main Research Ethics Committee (REC 07/Q1308/16) for the interview and ethnographic stages, respectively. All names have been changed and participants signed a consent form. Findings: Staff reported a lack of evidence, absence of proof and perturbing doubts with the X-ray volumetric imaging. Both patients' and practitioners' partial understanding about the risks and benefits of the system created incommensurable ideas regarding its use and what the patients' role was during these introductory stages. Conclusion: Maintaining partial truth telling renders patients' experiences of new treatment at odds with 'experimental' practice. This has wide-reaching implications for practice. [ABSTRACT FROM AUTHOR]

Objective: This qualitative study was imbedded in a randomized controlled trial evaluating the addition of geriatricians to usual care to enable the comprehensive geriatric assessment process with older patients on acute medical units. The qualitative study explored the perspectives of intervention participants on their care and treatment. Design: A constructivist study incorporating semi-structured interviews that were conducted in patients’ homes within six weeks of discharge from the acute medical unit. These interviews were recorded, transcribed, and analysed using thematic analysis. Setting: An acute medical unit in the United Kingdom. Participants: Older patients (n = 18) and their informal carers (n = 6) discharged directly home from an acute medical unit, who had been in the intervention group of the randomized controlled trial. Results: Three core themes were constructed: (1) perceived lack of treatment on the acute medical unit; (2) nebulous grasp of the role of the geriatrician; and (3) on-going health and activities of daily living needs postdischarge. These needs impacted upon the informal carers, who either took over, or helped the patients to complete their activities of daily living. Despite the help received with activities of daily living, a lot of the patients voiced a desire to complete these activities themselves. Conclusions: The participants perceived they were just monitored and observed on the acute medical unit, rather than receiving active treatment, and spoke of on-going unresolved health and activity of daily living needs following discharge, despite receiving the additional intervention of a geriatrician. [ABSTRACT FROM AUTHOR]

Objective: To explore the feasibility of implementing and evaluating the Guide to Action Care Home fall prevention intervention. Design: Two-centre, cluster feasibility randomized controlled trial and process evaluation. Setting: Purposive sample of six diverse old age/learning disability, long stay care homes in Nottinghamshire, UK. Subjects: Residents aged over 50 years, who had fallen at least once in the past year, not bed-bound, hoist-dependent or terminally ill. Interventions: Intervention homes (n = 3) received Guide to Action Care Home fall prevention intervention training and support. Control homes (n = 3) received usual care. Outcomes: Recruitment, attrition, baseline and six-month outcome completion, contamination and intervention fidelity, compliance, tolerability, acceptance and impact. Results: A total of 81 of 145 (56%) care homes expressed participatory interest. Six of 22 letter respondent homes (27%) participated. The expected resident recruitment target was achieved by 76% (52/68). Ten (19%) residents did not complete follow-up (seven died, three moved). In intervention homes 36/114 (32%) staff attended training. Two of three (75%) care homes received protocol compliant training. Staff valued the training, but advised greater management involvement to improve intervention implementation. Fall risks were assessed, actioned and recorded in care records. Of 115 recorded falls, 533/570 (93%) of details were complete. Six-month resident fall rates were 1.9 and 4.0 per year for intervention and control homes, respectively. Conclusions: The Guide to Action Care Home is implementable under trial conditions. Recruitment and follow-up rates indicate that a definitive trial can be completed. Falls (primary outcome) can be ascertained reliably from care records. [ABSTRACT FROM AUTHOR]

We explored health professionals’ views of implementing a systematic voiding program (SVP) in a multi-site qualitative process evaluation in stroke services recruited to the intervention arms of a cluster randomized controlled feasibility trial during 2011-2013. We conducted semi-structured group or individual interviews with 38 purposively selected nursing, managerial, and care staff involved in delivering the SVP. Content analysis of transcripts used normalization process theory (NPT) as a pre-specified organization-level exploratory framework. Barriers to implementing the SVP included perceived lack of suitability for some patient groups, patient fear of extending hospital stay, and difficulties with SVP enactment, scheduling, timing, recording, and monitoring. Enablers included the guidance provided by the SVP, patient and relative involvement, extra staff, improved nursing skill and confidence, and experience of success. Three potential mechanisms of consistency, visibility, and individualization linked the SVP process with improvements in outcome, and should be emphasized in SVP implementation. [ABSTRACT FROM AUTHOR]

Background: The Integrated Palliative care Outcome Scale is a newly developed advancement of the Palliative care Outcome Scale. It assesses patient-reported symptoms and other concerns. Cognitive interviewing is recommended for questionnaire refinement but not adopted widely in palliative care research. Aim: To explore German- and English-speaking patients’ views on the Integrated Palliative care Outcome Scale with a focus on comprehensibility and acceptability, and subsequently refine the questionnaire. Methods: Bi-national (United Kingdom/Germany) cognitive interview study using ‘think aloud’ and verbal probing techniques. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis and pre-defined categories. Results from both countries were collated and discussed. The Integrated Palliative care Outcome Scale was then refined by consensus. Setting/participants: Purposely sampled patients from four palliative care teams in palliative care units, general hospital wards and in the community. Results: A total of 15 German and 10 UK interviews were conducted. Overall, comprehension and acceptability of the Integrated Palliative care Outcome Scale were good. Identified difficulties comprised the following: (1) comprehension problems with specific terms (e.g. ‘mouth problems’) and length of answer options; (2) judgement difficulties, for example, due to the 3-day recall for questions; and (3) layout problems. Combining the results from both countries (e.g. regarding ‘felt good about yourself’) and discussing them from both languages’ perspectives resulted in wider consideration of the items’ meaning, enabling more detailed refinement. Conclusion: Cognitive interviewing proved valuable to increase face and content validity of the questionnaire. The concurrent approach in two languages – to our knowledge the first such approach in palliative care – benefited the refinement. Psychometric validation of the refined Integrated Palliative care Outcome Scale is now underway. [ABSTRACT FROM AUTHOR]

Four White British women who had not signed up to be organ donors were interviewed in depth to investigate their feelings on organ donation. Transcripts were analysed using Interpretative Phenomenological Analysis to reveal how the ability to detach from the body affects the acceptance of organ donation, how organ donation can trigger difficult thoughts and how the family can be used to explain not having signed up. The findings confirm previous empirical evidence but also offer original insight on the discrepancy between attitudes and behaviours, how fears can inhibit action and the importance of communicating organ donation wishes to family. [ABSTRACT FROM AUTHOR]

Background: The role of oxygen therapy to palliate dyspnoea is controversial. Without a clear evidence base oxygen is commonly prescribed, sometimes to the detriment of patients. This use of oxygen appears to be an entrenched culture, the roots of which remain obscure. Aim: To explore healthcare professionals’ perceptions of oxygen therapy in palliative care. Design: Interpretative phenomenological analysis study utilising semi-structured interviews to explore beliefs and behaviours of healthcare professionals regarding palliative oxygen therapy. Data were recorded, transcribed and analysed using interpretative phenomenological analysis. Setting/participants: A total of 34 healthcare professionals, including doctors, nurses, pharmacists and paramedics in the United Kingdom, who were involved in prescribing, or administering, oxygen therapy to palliate dyspnoea. Results: Most healthcare professionals in this study were well informed about oxygen therapy; all recognised the role of oxygen in palliative care setting as important. The overarching theme of compassion identified sub-themes of ‘comfort’, ‘do anything and everything’ and ‘family benefit’. However, the use of oxygen in the palliative care setting was not without its dilemmas, as additional sub-themes of ‘controversy’, ‘doubt’ and ‘dependency’ illustrated. Conclusion: Findings suggest that oxygen therapy in palliative care poses an on-going dilemma for healthcare professionals striving to provide optimum care. It seems patients and families often expect and welcome oxygen, but the perception of oxygen as a solution to dyspnoea can conflict with healthcare professionals’ own doubt and experiences. There appears to be an emotional cost associated with this dilemma and the choices that need to be made. [ABSTRACT FROM AUTHOR]

The article focuses on a study which aims to explore the experiences of people with end-stage kidney disease with regards to starting haemodialysis, its impact on quality of life and their preferences for future care. It also aims to explore the Advance Care Planning needs of the population. It offers the semi-structured qualitative interview study of people receiving haemodialysis.

Chronic fatigue syndrome receives little attention in the medical curriculum. This study explores UK medical students’ knowledge of and attitudes towards chronic fatigue syndrome. Semi-structured interviews (average length 22 minutes) were conducted with 21 participants (7 females and 14 males) in years 3 (n = 4), 4 (n = 11) and 5 (n = 6) of their studies. Inductive thematic analysis taking a realist perspective produced three themes: limited knowledge, influences on attitudes and training needs. Students acquired their knowledge and attitudes largely from informal sources and expressed difficulty understanding chronic fatigue syndrome within a traditional biomedical framework. Incorporating teaching about chronic fatigue syndrome into the medical curriculum within the context of a biopsychosocial understanding of illness could encourage more positive attitudes towards chronic fatigue syndrome. [ABSTRACT FROM AUTHOR]

The article presents a mixed methods study that aimed to design a best practice model to promote partnership practice between intellectual disability services and specialist palliative care. The study found that only few intellectual disability services and nursing homes reported contact with specialist palliative care services in Great Britain. The Phase I of the study showed that partnership practice was infrequent while in Phase 2, the issues of partnership in practice were addressed.

The article presents a study which examines how people with life-limiting conditions and their families experience transition, including the implications for hospices of children. The study used a grounded theory approach and in-depth, semi-structured interviews for qualitative study. Results showed that one aspect of developing support for young people is to provide an appropriate building, and a different model of support is required.

The article presents a study that explores the palliative care needs of patients with end-stage progressive idiopathic fibrotic interstitial lung disease. The study reported uncontrolled symptoms of insomnia, cough and shortness of breath to patients from lung disease centres in London, England. It suggests the need for an education and guidance of palliative care to improve symptom control and a case conference intervention to help address substantial symptom control and psychosocial needs.

The article discusses administering of anticholinergic agents as end-of-life care treatment, (during patient's death rattle). Though administering it would look beneficial for the carers, relatives and to the patients themselves, it was found that the side effects of anticholinergics at the end of life was recognized as problematic and had little influence on prescribing and administration.

This paper aims to investigate the possibility of safely and lawfully employing a sustainable reduce, reuse, recycle philosophy in the management of waste within healthcare settings. Climate change presents significant threats to our wellbeing on a global scale and provides a new challenge for healthcare organisations. As the United Kingdom’s biggest public sector employer, the National Health Service has enormous power to mitigate the impact of climate change by implementing sustainable practices. One area in which sustainable practices could be employed is within healthcare waste management. The investigation used a qualitative approach using semi-structured interviews with 20 participants responsible for the safe management of healthcare waste in an English county.Interviews indicated that topics such as knowledge, the environment, finance and legislation influence attitudes and behaviour in healthcare waste management. Participants were clear that from financial and environmental perspectives an aim to reduce, reuse and recycle waste in health care was desirable. Attempts to implement sustainable healthcare waste management practices, informed by a sustainable waste management philosophy are desirable both financially and environmentally. Research is needed to explore behaviour, attitudes, learning, knowledge and the role of the environment in healthcare waste management. [ABSTRACT FROM PUBLISHER]

Many perpetrators of domestic violence engage in a perpetual cycle of forming sequential relationships while repeating violent behavior. Their methods of manipulation successfully dominate a partner, the outcome of the relationship being control and violence. This research study was influenced by a feminist standpoint epistemology, and was focused on the narratives of 15 women who chose to talk in great detail about the transition in their respective relationship from love to violence. The findings revealed three tactics, termed the princess effect, feeling vulnerable, and commitment, which were deployed by male perpetrators in the early stages of a relationship. The purpose of these tactics was to successfully engage and retain women, to then exert control, inflict violence, and subjugate them. A description of the initial act of physical violence is provided, revealing the impact of these tactics in meeting the ends intended by the perpetrator. [ABSTRACT FROM PUBLISHER]