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Summary: The COVID-19 pandemic and subsequent public health restrictions caused an unprecedented impact on long-term care services in the United Kingdom (UK). A qualitative study was conducted in the East Midlands, UK, to explore how home care provision was perceived and experienced, by those organizing, commissioning, or providing care, and those receiving care, during the pandemic. Fifteen semi-structured telephone interviews were conducted between September to December 2020 with people who organize, commission, or provide home care (n = 9), recipients of home care (n = 3), and their informal carers (n = 6). Findings: Three broad themes were constructed through a thematic analysis: (1) positive about home care; (2) fear of infection; and (3) social isolation. In addition to these overarching themes, specific group themes were identified amongst group one: those organizing, commissioning, or providing care, and group two: those in receipt of the care and informal carers. Those in group one spoke about the pandemic creating stressful working conditions, regardless of whether organizing, commissioning, or providing care. Despite working throughout the pandemic, they felt a forgotten part of the essential workforce, when compared to those employed in the National Health Service and institutional care. Those in group two experienced a loss of control with visits cancelled or frequently occurring outside of scheduled times. Dissatisfaction with the visits was directed at the management level, rather than at the staff visiting the homes. Applications: Awareness and understanding of the experiences of home care will provide useful knowledge when commissioning future services. [ABSTRACT FROM AUTHOR]

Many people living with dementia have difficulties at mealtimes, which can result in serious complications for physical and mental health, leading to hospital admissions and even death. However, current training in mealtime care for staff working with this population has been found to be poorly reported, with variable effectiveness. It is essential that care home staff are able to provide good care at mealtimes. This study used ethnography to explore current practice in mealtime care for this population, identify good practice, and understand the factors influencing mealtime care. Approximately 28 h of mealtime observations were conducted in two UK care homes with diverse characteristics. Observations focused on interactions between care staff and residents living with dementia. Twenty-five semi-structured interviews were carried out with care home staff, family carers, and visiting health and social care professionals, to explore mealtime care from their perspectives. A constant comparative approach was taken, to probe emergent findings and explore topics in greater depth. Key thematic categories were identified, including: tensions in mealtime care; the symbolic nature of mealtime care; navigating tensions via a person-centred approach; contextual constraints on mealtime care; and teamwork in mealtime care. The findings indicated that a person-centred approach helps carers to find the right balance between apparently competing priorities, and teamwork is instrumental in overcoming contextual constraints. This evidence has contributed to development of a training intervention for care home staff. Future research should investigate the feasibility of mealtime care training in care homes. [ABSTRACT FROM AUTHOR]

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]

Introduction: Distance methods of supervision rapidly increased in use during the coronavirus disease 2019 (COVID-19) pandemic, and it is important to consider if these methods meet the needs of supervisees when deciding whether to retain these practices moving forward. Methods: An interpretative phenomenological approach was used to gain insight into the lived experience of distance supervision. Semi-structured interviews were completed with six occupational therapists who had experience receiving distance supervision as a supervisee, all of whom work in inpatient mental health units within a private healthcare company. Results: Interpretative phenomenological analysis revealed four superordinate themes of an altered interaction; the importance of a protected space; factors within the supervisory relationship and maximising the best of both worlds. Conclusion: Distance supervision methods afford increased access for supervisees and a reduction in the practical demands when supervised by an off-site supervisor. There are, however, clear differences in the nature of the experience which need to be considered to ensure that supervisee needs are met. This study provides insight into how distance supervision methods impact on the experience for supervisees and suggests areas for further consideration in moving forward with such approaches. [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]

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: 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]

Introduction: Post-stroke fatigue (PSF) is common and debilitating. However, while its effective management is a priority for clinicians and stroke survivors, there remains little evidence to provide guidance or underpin practice. Our aim, therefore, was to gain insights into the experiences of clinicians who routinely manage patients with fatigue. Method: Qualitative interview study. The target was to recruit a purposeful sample of approximately 20 participants with expertise in managing PSF and fatigue arising from other conditions. Maximum variation sampling was used to ensure a balance of participants across different settings. Data were analysed using a framework approach, iteratively developed and refined by including emergent themes. Results: We recruited 20 participants: nine occupational therapists (OTs), five physiotherapists, three nurses and three psychologists, which included three 'fatigue experts' from Europe and Australia. Analysis generated core themes around management and strategies used; these were similar regardless of professional background, clinical or geographical setting or condition treated. OTs felt a particular responsibility for fatigue management, although multidisciplinary teamwork was stressed by all. Conclusion: There are clear similarities in clinicians' experiences of managing PSF and fatigue across different conditions and also across professional groups. Clinicians rely predominantly on their own clinical knowledge for guidance. [ABSTRACT FROM AUTHOR]

Introduction: Most studies of the Latin American immigrant experience and care for relatives living with dementia have been in the United States (US). In the United Kingdom (UK), unlike the US, most Latin Americans are first generation immigrants and are a rapidly increasing population. Therefore, we aimed to explore the UK experiences of Latin Americans caring for a relative with dementia. Methods: We purposively recruited UK-based Latin American family carers of people with dementia ensuring maximum diversity. We conducted semi-structured qualitative interviews (in English or Spanish) with 11 family carers, stopping recruiting when we reached thematic saturation. We took an inductive thematic analytic approach. Findings: Four main themes were identified: (1) Family comes first, particularly older people, leading to an obligation to care; (2) dementia as an illness that is accepted and talked about, which is regarded as positive with close networks but not wider society; (3) difficult behaviours are not the responsibility of the person with dementia, who is often conceptualised as a child; and (4) caring expectations lead to incompatibility with formal services, and a reluctance to leave people with dementia alone. Conclusions: Familial obligation is the driver for family carers and acceptance of the illness helped despite adversities. Openness to talk about dementia with close networks was distinctive and helpful, contrasting with wider society, where greater awareness of dementia is needed. Considering the person with dementia as a child did not seem to undermine personhood and enabled maintenance of compassion. The relative with dementia was a priority. There was a lack of culturally and linguistically appropriate services, thus restricting family carers' ability to fulfil other roles, such as parental. [ABSTRACT FROM AUTHOR]

Background: Retinoblastoma is a rare form of pediatric eye cancer for which enucleation is a common treatment modality. There is an increasing focus upon the impact of enucleation on children and families. This study aimed to explore the experiences of children and their families following enucleation to consider the barriers that may be encountered when adjusting to living with an artificial eye and identifying the support services and strategies used to address these barriers. Methods: Using a descriptive qualitative approach, interviews were conducted with 12 parents and seven children and thematic analysis was used to identify four themes representing the perspective of parents and children. Results: Parent themes identified were (a) entry into the world of retinoblastoma; (b) the importance of specialist support; (c) a family learning to cope; and (d) navigating school. The perspectives of children were (a) the importance of preparation and play; (b) positive reinforcement and hospital support; (c) support and openness at home; and (d) the importance of good school planning. Two overarching themes related to parent and child adaptation were also identified. Discussion: The study findings reveal that the process of adapting to living with an artificial eye extended to influencing decisions around parenting, learning to advocate for their child, and supporting children through school and peer relationships. For children, the importance of ongoing support and information was vital to enhance understanding, adaptation, and development of independence. Overall, the study suggests that children and families undergoing enucleation need continuing, individualized, and specialist support. [ABSTRACT FROM AUTHOR]

It has long been known that nursing work is challenging and has the potential for negative impacts. During the COVID-19 pandemic most nurses' working landscapes altered dramatically and many faced unprecedented challenges. Resilience is a contested term that has been used with increasing prevalence in healthcare with health professionals encouraging a "tool-box" of stress management techniques and resilience-building skills. Drawing on narrative interview data (n = 27) from the Impact of Covid on Nurses (ICON) qualitative study we examine how nurses conceptualized resilience during COVID-19 and the impacts this had on their mental wellbeing. We argue here that it is paramount that nurses are not blamed for experiencing workplace stress when perceived not to be resilient "enough," particularly when expressing what may be deemed to be normal and appropriate reactions given the extreme circumstances and context of the COVID-19 pandemic. [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]

Introduction: Evaluations of rehabilitation potential are an everyday occurrence, yet the concept is poorly understood and there is a lack of understanding about the reasoning process. This study aimed to explore how occupational therapists and physiotherapists evaluated the rehabilitation potential of older people following an acute hospital admission. Method: Focused ethnography was utilised, primarily using observation, interviewing and review of records within one acute medical ward in a general hospital in the United Kingdom. Five patient participants gave consent for their episode of care to be studied, for interactions with professionals to be observed and for their clinical records to be reviewed. Three occupational therapists and two physiotherapists then participated in individual interviews. Findings: Thematic analysis of data led to the identification of a four-stage reasoning process. The four stages are as follows: gathering baseline information; provision of curative and supportive interventions; provision and monitoring of rehabilitative interventions; the evaluation of rehabilitation potential and decision about the subsequent pathway. Conclusions: The reasoning process illustrates the professional reasoning of occupational therapists and physiotherapists when evaluating rehabilitation potential for older adults in acute care. However, it also highlights vulnerabilities to professional reasoning which may contribute to subjectivity, inconsistency or risk to patients. [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]

Introduction: Occupational therapy has long had a strong presence in military mental healthcare. Today's veterans have complex needs and can face challenges reintegrating into civilian life. This exploratory study investigated whether veterans receiving mental health treatment who participated in a bespoke occupational therapy and resilience workshop intervention improved their perceived participation in everyday life. Method: An interpretivist hermeneutic phenomenological approach was used to explore veterans' perspectives. Ten participants took part in two semistructured focus groups. Thematic analysis was used to identify and analyse patterns within the data. Findings: Most participants developed occupational goals and started to make lifestyle changes; participants developed an appreciation of the value of occupation; participants developed insight into their recovery journeys; and value was placed on the 'healing power' of the group. Conclusion: This exploratory study provides preliminary evidence to suggest occupational therapy was influential in helping participants understand the impact of occupation on health and start making lifestyle changes. Participants also reflected on their recovery journeys. The benefits of doing this within a group environment appear to have been particularly therapeutic. Original occupational therapy research in this specialism is sparse. This novel study provides insight that can further discussion and enhance understanding about what the profession can offer this client group. [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]

Introduction: The clinical benefits of 24-hour postural management are widely recognised by occupational therapists, but little is known about its impact on service users and carers or whether clinical practice is consistent across regions. The aim of this research was to investigate the use of 24-hour postural management by occupational therapists and to explore its impact on service users with neurodisability and their carers. Methods: Quantitative and qualitative methods were employed in two phases: (a) online survey with 96 occupational therapists across one UK region, with data analysed by descriptive statistics and correlations; (b) focus groups with service users and/or carers (n = 9), with data analysed by thematic analysis. Results: Findings showed moderate positive correlation between frequency of use and (a) all key intervention skills and (b) knowledge of night-time positioning (p < 0.001). Moderate positive correlations were found between level of training and (a) assessment skills and (b) knowledge of night-time positioning (p < 0.001). The overarching theme from focus groups was 'reliance on individualised equipment', with overwhelming frustration from lack of support, loss of identity, equipment cost, insufficient focus on preventative strategies and accessibility issues. Conclusion: A clinical practice guideline, including training, is crucial to direct practice. Providers must engage with service users and carers to address their frustrations. [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]

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]

Background: People with inflammatory rheumatological conditions (IRCs), are at increased risk of comorbidities such as cardiovascular disease, osteoporosis, anxiety and depression. The INCLUDE pilot trial evaluated a nurse-delivered review of people with IRCs which sought to identify and initiate management of comorbid conditions. Aim: A nested qualitative study was undertaken to examine the acceptability of the INCLUDE review. Methods: A qualitative interview-based design in UK primary care settings. A purposive sample of 20 patients who attended an INCLUDE review, were interviewed. Inductive thematic analysis was undertaken. Themes were agreed through multidisciplinary team discussion and mapped onto constructs of the Theoretical Framework of Acceptability (TFA). Results: Six themes mapped onto six of the seven TFA constructs. Patients reported the review to be effective by identifying and initiating management of previously unrecognised comorbid conditions. Some participants reported barriers to following recommendations, such as lifestyle modifications or taking more medication. Conclusion: A nurse-delivered review to identify comorbidities is acceptable to patients with IRCs. The TFA provided a novel analytical lens. [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]

Introduction: There is limited understanding of the cultural needs of diverse Black and Minority Ethnic populations such as South Asian older adults, which may be perpetuating occupational injustices and health inequalities faced by these groups. Although cultural considerations are intrinsic to person-centred occupational therapy and increasingly relevant to the changing landscape of health and social care, the profession is criticised for its western-centric focus. This study aimed to gain understanding of the current cross-cultural issues in supporting South Asian older adults in the UK, as perceived by occupational therapists. Method: A constructivist qualitative design supported by thematic analysis was used, involving seven occupational therapists in the United Kingdom who participated in semi-structured interviews via Skype/telephone. Findings: Cross-cultural issues were illustrated through the following themes: 'when the barriers go down' – cultural mismatch in individualist vs. collectivist worldviews; 'invasion of the family home' – cultural inappropriateness of standard interventions; and 'I go into every assessment assuming nothing' – recognition of and response to challenges. Conclusion: This study provides insight into cross-cultural issues in occupational therapy for South Asian older adults, revealing a gap between theory and practice in integrating cultural humility. It highlights the need for a more inclusive, person-centred approach to support culturally diverse populations. [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]

Background: Psychosis, characterised by altered perceptions or interpretations of reality, remains a contested area. Lately, perspectives and conceptualisations of psychosis that have traditionally been more peripheral have gained greater recognition. Both the British Psychological Society and Critical Psychiatry Network have highlighted some contentious areas in recent publications. Aims: The aim was to use critical narrative analysis to consider what facilitates and inhibits medical professionals with clinical experience of psychosis to engage with the topic of psychosis as a contentious area. Method: Semi-structured interviews were conducted with 12 medical professionals, who were at trainee or qualified level with a minimum of 6 months' clinical experience within psychiatry, across three Trusts within the United Kingdom. This purposive sample had a diverse range of perspectives regarding psychosis. Critical narrative analysis comprising six distinct stages, informed the analysis. Results: Participants positioned themselves broadly within one of three groups: biological psychiatrists, critical psychiatrists and those more conflicted. Narrative analysis was undertaken for each participant before being integrated for this article. The research highlighted several factors which either limit or facilitate opportunities within the psychiatric profession to engage with a plurality of views regarding psychosis. These included the significance of power and hierarchy within the profession, the role of dialogue and the prevalence of reflexivity within the profession. Conclusion: A pattern was identified of psychiatrists generally associating with like-minded others and not engaging with wider evidence regarding psychosis, partly as a result of the inherent threats to the power and hierarchy of the profession. This led to new ideas being widely unknown or undervalued, potentially to the disservice of clinical practice. [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]

Objectives: Improving patient experience is widely regarded as a key component of health care quality. However, while a considerable amount of data are collected about patient experience, there are concerns this information is not always used to improve care. This study explored whether and how frontline staff use patient experience data for service improvement. Methods: We conducted a year-long ethnographic case study evaluation, including 299 hours of observations and 95 interviews, of how frontline staff in six medical wards at different hospital sites in the United Kingdom used patient experience data for improvement. Results: In every site, staff undertook quality improvement projects using a range of data sources. Teams of health care practitioners and ancillary staff engaged collectively in a process of sense-making using formal and informal sources of patient experience data. While survey data were popular, 'soft' intelligence – such as patients' stories, informal comments and observations – also informed staff's improvement plans, without always being recognized as data. Teams with staff from different professional backgrounds and grades tended to make more progress than less diverse teams, being able to draw on a wider net of practical, organizational and social resources, support and skills, which we describe as team-based capital. Conclusions: Organizational recognition, or rejection, of specific forms of patient experience intelligence as 'data' affects whether staff feel the data are actionable. Teams combining a diverse range of staff generated higher levels of 'team-based capital' for quality improvement than those adopting a single disciplinary approach. This may be a key mechanism for achieving person-centred improvement in health care. [ABSTRACT FROM AUTHOR]

Introduction: Evidence-based occupational therapy home programmes for children with unilateral cerebral palsy have demonstrated efficacy; however, uptake into routine practice is varied. The aim of this study was to gain a deeper understanding of the therapist-perceived supports and barriers to using occupational therapy home programmes for children with unilateral cerebral palsy, based on evidence of best practice in the United Kingdom. Method: Fourteen occupational therapists completed semi-structured telephone interviews. Using a qualitative framework analysis approach, support and barrier factors were indexed against the Theoretical Domains Framework, before being categorised more broadly using the Capability, Opportunity, Motivation and Behaviour Model. Findings: Common supports included: (a) strong leadership within the team to facilitate the translation of occupational therapy home programmes and evidence-based interventions into service-specific protocols; (b) knowledge exchange within professional networks and (c) mentorship. Common barriers included: (a) lack of resources; (b) restricted opportunities to review occupational therapy home programmes and (c) difficulties keeping up-to-date with the evidence in this area. Conclusion: To be effective, occupational therapy home programmes need to be based on evidence of best practice; analysis indicated an urgent need to capture outcomes, record parental practice, further integrate 'occupation' within goal-setting, and develop use of conceptual models of practice to both enhance family-centred care and articulate the profession's unique contribution. [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]

Objectives: We conducted a qualitative process evaluation embedded in a cluster randomized controlled trial in rural Guangxi China, which successfully reduced antibiotic use for children upper respiratory tract infections. This study aims to report on the factors that influenced behaviour change among providers and caregivers in the intervention arm, and to explore contextual considerations which may have influenced trial outcomes. Methods: A total of 35 in-depth interviews were carried out with hospital directors, doctors, and caregivers of children. Participants were recruited from six purposively selected facilities, including two higher performing and two lower performing facilities per trial results. Interviews were conducted in Chinese and translated to English. We also observed guideline training sessions and prescription peer review meetings. Data were analysed using framework analysis. Results: Intervention-arm doctors described that training sessions improved their knowledge, skills and confidence in appropriate prescribing. This was contrasted by control arm participants who did not receive training and reported less agency in reducing prescribing rates. Prescription peer review meetings were seen as an opportunity for further education, action planning and goal setting, particularly in high performing hospitals, where these meetings were led by senior doctors who were perceived to have relevant clinical experience. Caregiver participants reported that intervention educational materials were helpful but they identified information from doctors was more useful. Providers and caregivers also described contextual health system factors, including hospital competition, short consultation times, and antibiotic availability without prescription, which shaped care preferences. Conclusions: This qualitative process evaluation identified a range of factors that may have influenced behaviour among providers and caregivers leading to observed changes in reducing inappropriate antibiotic prescribing in China. Future interventions to reduce antibiotic prescribing should consider system level and wider contextual factors to better understand behaviours and patient care preferences. [ABSTRACT FROM AUTHOR]

Introduction: The facilitation of meaningful leisure participation for children and young people requires an understanding of what leisure means to them. This study aimed to understand meaningful leisure from the perspective of children and young people with complex physical and communication disabilities. Method: A hermeneutic phenomenological research design was used. Data was gathered through multiple interviews with six young people supported by photo elicitation, Talking Mats and direct observation. Individual case studies were analysed, together with six autobiographies of people with similar disabilities. Data analysis was iterative and multi-directional, alternating between segments and the whole throughout interpretation. Results: Leisure experience meanings were uniquely constructed for each person, based on preferences, personality and circumstances. The tree of leisure emerged as a useful metaphor for three essential features (control, engrossing, enjoyment) and four key meanings (escape, exploration, exchange and expression) of leisure. Children and young people experienced five meaningful outcomes that lasted beyond the leisure activity (restoration, protection, construction, reflection and connection). Conclusion: For children and young people with disabilities, a balanced array of diverse leisure experiences provides a powerful and accessible route to wellbeing. Implications for practice include understanding the individual, focusing on the social environment, supporting self-advocacy and promoting opportunities for free movement. [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: There are an estimated 46.8 million people worldwide living with dementia in 2015, being cared for usually by family members or friends (informal caregivers). The challenges faced by informal caregivers often lead to increased levels of stress, burden and risk of care-recipient institutionalisation. Aim: The overarching aim of this study was to explore the experiences and perceptions of informal caregivers of people with dementia when interacting with the health care system, and whether the support received acted as a mediator of caregiver stress. The secondary aim was to investigate healthcare professionals' views and current practice regarding people with dementia and their interactions with informal caregivers. Method: We employed a qualitative research design, using focus groups and one face-to-face interview with a purposive sample of informal caregivers and healthcare professionals in Lincolnshire, UK. Data were collected between March and July 2015. We used the stress-process model of stress in caregivers as a theoretical framework. Results: We interviewed 18 caregivers and 17 healthcare professionals. Five themes, mapped to the stress-process in caregivers' model, captured the main challenges faced by caregivers and the type of support they wanted from health care services. Primary stressors included the challenge of diagnosing dementia; caregivers' needs and expectations of an in-depth knowledge and understanding of dementia from healthcare professionals; and need for carer education. Secondary role strain included lack of support and mismatch of communication and expectations. Caregiver involvement in monitoring care and disease was a potential mediator tool. Conclusions: Fragmentation of dementia care services, lack of training for healthcare professionals and the dearth of information for caregivers means health care services are only partially fulfilling a support role. In turn, lack of support may be intensifying caregiver stress leading to worsening in their health and well-being; thus, potentially increasing the risk of institutionalisation of their care-recipient. [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]

Objectives Many countries seek to improve care for people with chronic conditions and increase delivery of care outside of hospitals, including in the home. Despite these policy objectives in the United Kingdom, the home visiting nursing service workforce, known as district nursing, is declining. This study aimed to investigate the factors influencing the development of district nursing workforces in a metropolitan area of England. Methods A qualitative study in a metropolitan area of three million residents in diverse socio-economic communities using semi-structured interviews with a purposive sample of senior nurses in provider and commissioning organizations. Thematic analysis was framed by theories of workforce development. Findings: All participants reported that the context for the district nursing service was one of major reorganizations in the face of wider National Health Service changes and financial pressures. The analysis identified five themes that can be seen to impact the ways in which the district nursing workforce was developed. These were: the challenge of recruitment and retention, a changing case-mix of patients and the requirement for different clinical skills, the growth of specialist home visiting nursing services and its impact on generalist nursing, the capacity of the district nursing service to meet growing demand, and the influence of the short-term service commissioning process on the need for long-term workforce development. Conclusion There is an apparent paradox between health policies which promote more care within and closer to home and the reported decline in district nursing services. Using the lens of workforce development theory, an explanatory framework was offered with factors such as the nature of the nursing labour market, human resource practices, career advancement opportunities as well as the contractual context and the economic environment. [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]

Objectives To explore the role of integrated commissioning in improving the transition of young people with long-term conditions from child to adult services. We aimed to identify organizational and policy gaps around transition services and provide recommendations for integrated commissioning practice. Methods Semi-structured in-depth interviews were conducted with two groups of participants: (1) twenty-four stakeholders involved in the commissioning and provision of transition services for young people with long-term conditions in two regions in England; (2) five professionals with national roles in relation to planning for transition. Transcripts were interrogated using thematic analysis. Results There is little evidence of integrated commissioning for transitional care for young people with long-term conditions. Commissioners perceive there to be a lack of national and local policy to guide integrated commissioning for transitional care; and limited resources for transition. Furthermore, commissioning organizations responsible for transition have different cultures, funding arrangements and related practices which make inter- and intra-agency co-ordination and cross-boundary continuity of care difficult to achieve. Conclusions Integrated commissioning may be an effective way to achieve successful transitional care for young people with long-term health conditions. However, this innovative relational approach to commissioning requires a national steer together with recognition of common values and joint ownership between relevant stakeholders. [ABSTRACT FROM AUTHOR]