'I don't think they really link together, do they?' An ethnography of multi-professional involvement in advance care planning in nursing homes.

BACKGROUND: Given the globally ageing population, care homes have an important role in delivering palliative and end-of-life care. Advance care planning (ACP) is promoted to improve the quality of end-of-life care in this setting. While many professionals can be involved in ACP, little is known about what influences multi-professional involvement and how multi-professional working impacts the ACP process in the UK. This study investigated multi-professional practice in relation to ACP in nursing homes. DESIGN AND METHODS: An ethnography was undertaken in two UK nursing homes using multiple methods of data collection: observations, interviews and document review. Participants included the following: nursing home residents (n = 6), relatives (n = 4), nursing home staff (n = 19), and visiting health and social care professionals (n = 7). Analysis integrated thematic analysis, mapping of resident ACP trajectories and documentary analysis. FINDINGS: This paper suggests that multi-professional and relatives' involvement in ACP was disjointed. Continuity and coordination were disrupted by misalignment of visiting professional and nursing home organisational structures. Findings show a 'knotworking' approach to teamwork and power imbalance between nursing home staff and visiting professionals, such as general practitioners. While residents wished their relatives to be involved in their ACP, this was not formally recognised, and limited support existed to facilitate their involvement. CONCLUSION: The structure and organisation of multi-professional and relatives' involvement in ACP led to fragmentation of the process. This marginalised the voice of both the resident and nursing home staff, thereby limiting ACP as a tool to enhance quality of end-of-life care.

Eye donation in hospice and hospital palliative care settings: perceptions, practice, and service development needs - findings from a national survey.

OBJECTIVES: New routes for supply of eye tissue are needed in the UK to support transplant surgery and medical research. Hospice care (HC) and Hospital-based Palliative care (HPC) services represent potential supply routes. This paper reports findings from the survey arm of the Eye Donation from Palliative and Hospice Care-Investigating potential, practice preference and perceptions study (EDiPPPP), objectives of which were to: i) Investigate existing practice in relation to eye donation across HC and HPC settings; ii) identify perceptions of HCPs toward embedding eye donation into routine end of life care planning; iii) investigate the informational, training, or support needs of clinicians regarding eye donation. DESIGN: Online survey of UK-based HC and HPC clinicians, distributed through professional organisations (Association of Palliative Medicine (UK); Hospice UK). PARTICIPANTS: One hundred fifty-six participants completed (63% HC; 37% HPC-8% response rate, of n = 1894 approached). RESULTS: Majority of participants (63%, n = 99) supported raising eye donation (ED) with patients and families and agreed that ED should be discussed routinely with eligible patients. However, 72%, (n = 95) indicated that staff within their clinical setting did not routinely discuss the option of ED in end-of-life care planning conversations with the majority of participants reporting that the option of ED was not 'routinely discussed in multi-disciplinary team or other meetings. CONCLUSIONS: Despite significant support, ED is not part of routine practice. Attention to barriers to embedding ED and reducing knowledge deficits are urgently needed to increase the supply of eye tissue for use in transplant operations.

Uncovering the decision-making work of transferring dying patients home from critical care units: An integrative review.

AIMS: To understand how decisions are made to transfer dying patients home from critical care units. BACKGROUND: Many people prefer a home death, but a high proportion die in critical care units. Transferring dying patients home is recognized to be complex but transfer decision-making itself remains unclear. DESIGN: Integrative review. DATA SOURCES: Seven bibliographic databases (origin-2015), grey literature and reference lists were searched. REVIEW METHODS: An integrative review method was used to synthesize data from diverse sources. Papers were selected through title and abstract screening and full-text reviewing, using inclusion and exclusion criteria derived from review questions. Following quality appraisal, data were extracted and synthesized using normalization process theory as a framework. RESULTS: The number of patients transferred home ranged from 1-346, with most papers reporting on the transfer of one or two patients. Four themes regarding transfer decision-making work were generated: divergent views and practice, multiple stakeholders' involvement in decision-making, collective work and limited understanding of individuals' experiences. CONCLUSION: The practice of transferring patients home to die and its decision-making varies internationally and is usually influenced by the care system, culture or religion. It is less common to transfer patients home to die from critical care units in western societies. A better understanding of the decision-making work was obtained but mainly from the perspective of hospital-based healthcare professionals. Further research is needed to develop decision-making practice guidance to facilitate patients' wishes to die at home.

A web-based intervention (RESTORE) to support self-management of cancer-related fatigue following primary cancer treatment: a multi-centre proof of concept randomised controlled trial.

PURPOSE: Cancer-related fatigue (CRF) is a frequent and distressing symptom experienced after cancer treatment. RESTORE is the first web-based resource designed to enhance self-efficacy to manage CRF following curative-intent treatment. The aim of this study is to test the proof of concept and inform the design of an effectiveness trial. METHODS: A multi-centre parallel-group two-armed (1:1) exploratory randomised controlled trial (RCT) with qualitative process evaluation was employed in the study. Participants (≥18 years; ≤5 years post treatment with moderate to severe fatigue) were recruited and randomly assigned to RESTORE or a leaflet. Feasibility and acceptability were measured by recruitment, attrition, intervention adherence, completion of outcome measures and process evaluation. Change in self-efficacy to manage CRF was also explored. Outcome measures were completed at baseline (T0), 6 weeks (T1) and 12 weeks (T2). Data were analysed using mixed-effects linear regression and directed content analysis. RESULTS: One hundred and sixty-three people participated in the trial and 19 in the process evaluation. The intervention was feasible (39 % of eligible patients consented) and acceptable (attrition rate 36 %). There was evidence of higher fatigue self-efficacy at T1 in the intervention group vs comparator (mean difference 0.51 [-0.08 to 1.11]), though the difference in groups decreased by 12 weeks. Time since diagnosis influenced perceived usefulness of the intervention. Modifications were suggested. CONCLUSION: Proof of concept was achieved. The RESTORE intervention should be subject to a definitive trial with some adjustments. Provision of an effective supportive resource would empower cancer survivors to manage CRF after treatment completion. TRIAL REGISTRATION: ISRCTN67521059.

'You can't say, "what about me?" I'm not the one with cancer': information and support needs of relatives.

OBJECTIVE: The aims of this study were to explore relatives' experiences of talking about cancer within the family and to identify their information and support needs. METHOD: A cross-sectional in-depth interview study with relatives and partners (n = 22) of cancer patients recruited through community settings was conducted. A thematic approach was used for analysis. RESULTS: Information sharing and communication within families operated within a context of cancer-related uncertainty. Discussion about cancer was generally viewed as beneficial, but relatives faced dilemmas, which inhibited information exchange. Participants often devised strategies to manage the challenges faced to fulfil their needs for information and support. This was deemed important as talking about cancer allowed relatives to support patients' preferences for care, deal with practical demands and come to terms with difficult issues. Lack of information was perceived to affect the quality of care participants could provide. CONCLUSION: Participants did not always want to know everything about the patient's illness, suggesting the importance of tailoring information to individual needs. Offering a range of different kinds of support directly to relatives may improve patient care and emotional well-being.

RESTORE: an exploratory trial of a web-based intervention to enhance self-management of cancer-related fatigue: findings from a qualitative process evaluation.

BACKGROUND: Cancer-related fatigue is a distressing symptom experienced by many after cancer treatment. An exploratory randomised controlled trial was conducted to test proof of concept of RESTORE: a web-based tool to enhance self-efficacy to manage cancer-related fatigue. This paper reports findings from a qualitative process evaluation to determine feasibility and acceptability of the intervention and trial processes. METHOD: Qualitative process evaluation carried out at the end of the trial to explore participants' experiences using semi-structured telephone interviews with a purposive sample of participants from both trial arms. Normalisation Process Theory informed data collection and analysis. Analysis involved directed content analysis within a Framework Approach. RESULTS: Nineteen participants took part. They understood the purpose and requirements of the trial and identified beneficial outcomes from taking part. For the majority, the work of the trial was easily accommodated into daily routines and did not require new skills. There were mixed views about the value of the information provided by RESTORE, depending on time since diagnosis and treatment. Personal factors, constraints of the intervention, and environmental context inhibited the integration and embedding of RESTORE into everyday life. Access to the intervention at an early stage in the treatment trajectory was important to effective utilisation, as were individual preferences for delivery of information. CONCLUSION: The theoretical foundations of the intervention were sound. Participants derived benefits from the intervention but barriers to implementation and integration suggest that RESTORE and the trial processes require some modification before testing in a full trial. TRIAL REGISTRATION: ISRCTN67521059 (10(th) October 2012).

"We all see things through a different lens based on our life experiences": co-production of a web-based implementation toolkit with stakeholders across the health and social care system.

Background: Implementing new innovations across the health and social care system is complex, involving many factors that in recent years have been compounded by Covid-19. While a plethora of implementation tools and frameworks are available, there are limitations in terms of their design and accessibility. Co-production is a valuable mechanism for developing tools that have utility and accessibility for those tasked with using them in health and social care organisations and there is growing acknowledgement of increasing the role of co-production in implementation science. This paper provides novel insight into co-production practices and relevance to implementation science by reporting findings from a study to co-produce a web-based implementation toolkit (WIT) that is accessible, usable and designed to support adaptive implementation across health and social care systems. Key themes relating to the process of co-production are outlined and the value of using co-production in implementation processes are discussed. Methods: A web-based survey (n = 36) was conducted with a range of stakeholders across health and social care. Findings identified a need for WIT. Survey respondents were invited to express interest in becoming part of a co-production group and to take part in three online interactive workshops to co-produce WIT. Workshops took place with the group (n = 12) and focused on key developmental stages of WIT. Results: Online co-production workshops were integral to the development and refinement of WIT. Benefits of using this process identified three interrelated themes: (i) Co-designing key features of the toolkit, (ii) Co-producing a toolkit with utility for users across health and social care settings, (iii) Co-producing a toolkit to support the implementation journey. Our approach of undertaking co-production as a dialogic process enabled generation of these themes. To illuminate discussion of these themes we draw upon iterative co-development of the "active ingredients" of key components (e.g., interactive Implementation Wheel) and functions (e.g., interactive "pop-up" definitions of keyword) and features (e.g., case studies) of WIT. Conclusion: Using a co-production approach with a range of end-users across health and social care systems, highlights the benefits of understanding implementation processes for users in these settings. User-centred design and processes for ensuring accessibility readily support the translation of implementation into rapidly changing health and social care systems to benefit outcomes for patients, their families, carers, service users and practitioners.

The decision-making process of transferring patients home to die from an intensive care unit in mainland China: A qualitative study of family members' experiences.

OBJECTIVES: To map the decision-making process of family members involved in transferring a critically ill patient home to die from an intensive care unit in mainland China and to explore the experiences of those family members. DESIGN: A constructivist qualitative study. SETTING: One hospitals intensive care unit in Southeast China. METHODS: Thirteen adult family members (of ten patients) who participated in decision-making related to transferring a relative home to die from the intensive care unit were purposively selected. Data were collected via interviews and analysed applying thematic analysis. FINDINGS: A two-stage decision-making process was identified. Family decision-making was mediated by factors including: accepting the impending death and hope that the patient would not die; time pressures in which decisions had to be made, and the challenges of meeting cultural expectations of a home death. Transfer home was a family-centred decision constrained by a gender-based hierarchy restricting the involvement of different family members. CONCLUSION: The stages and key factors in the decision-making process of family members when involved in transferring a patient home to die from an intensive care unit in China are rooted and informed by cultural expectations and limits in the current healthcare system regarding end-of-life care options. Understanding the climate in which family members must make decisions will facilitate supportive interventions to be implemented by healthcare professionals. Further empirical research is needed to explore family members' needs when the patient has been transferred and dies at home in mainland China. IMPLICATIONS FOR CLINICAL PRACTICE: Healthcare professionals need to understand the challenges family members face when deciding to transfer a relative home to die from an intensive care unit. For example time pressures can limit the choices of family members so that to provide them with timely, ongoing, realistic updates for a greater involvement of family members in generating end of life care plans could be beneficial.1.

10†Eye donation in palliative and hospice care settings: patient views and missed opportunities!

Eye donation in Palliative and Hospice care settings: patient views and missed opportunities. BACKGROUND: There is a global shortage of donated eye tissue for use in sight saving and sight restoring operations such as corneal transplantation. In the UK the Royal National Institute of Blind People (RNIB) report that over two million people are currently living with sight loss with this figure predicted to rise to approx. four million by 2050. Patients who die in palliative and hospice care settings could potentially donate eye tissue, however, the option of eye donation is not routinely raised in end-of-life planning discussions. Research evidence suggests that health care professionals (HCP) are reluctant to discuss eye donation as they perceive it as something that will distress patients and family members. AIM: This presentation will share findings regarding the views of patients and carers, including: their feelings and thoughts about the option of eye donation being raised with them; who they think should raise this issue; when this option should be discussed and who should be included in the discussion. FINDINGS: Findings are drawn from the NIHR funded national study: Eye Donation from Palliative and Hospice care contexts: investigating Potential, Practice, Preference and Perceptions (EDiPPPP) in partnership with three palliative care and three hospice care settings in England. Findings indicate high potential for eye donation but very low levels of identification of potential donors; low levels of approach to patients and family members about the option of eye donation; lack of inclusion of eye donation in end-of-life care planning and/or clinical meeting discussions (i.e. Multi-Disciplinary Team (MDT) meetings) and very limited awareness raising initiatives or activity to inform patients and carers of the option of eye donation. CONCLUSION: It is imperative that patients who would want to be a donor are identified and assessed for eligibility for donation as part of high-quality end of life care. It is clear from studies reported over the past 10 years that not a lot has changed regarding the identification, approach, and referral of potential donors from palliative and hospice care settings, and this is due in part to perceptions held by HCPs that patients would be unwilling to engage in discussions regarding the option of eye donation in advance of their death. This perception that is not substantiated by empirical research.

Transferring home to die from critical care units: A scoping review of international practices.

PURPOSE: To identify and characterise the international practices of transferring a dying patient home to die from critical care units. MATERIALS AND METHODS: A systematic scoping review following the Joanne Briggs Institute methodology was applied searching fifteen data sources to identify papers published in English and Chinese from 1970 to 2019. RESULTS: Of the 28 papers meeting eligibility criteria 19 were published in the West and seven in China. The number of patients being transferred home to die was larger in China (74/184-96/159) than in the West (1-7). Clinical characteristics of patients transferred included: consciousness, with or without intubation and ventilation, and clinical stability. Reported key barriers to transfer included: Lack of evidence guiding transfer practice, the CCU environment and culture, Practical and logistical factors and Family members expectations and reactions. Key facilitators of transfer were reported as: Engagement with the multidisciplinary team and Personal patient and family wishes. CONCLUSIONS: Transferring patients home to die from critical care is a complex practice varying significantly across countries. Further research to address current knowledge gaps is important to inform policy and practice.

Barriers and Facilitators to Eye Donation in Hospice and Palliative Care Settings: A Scoping Review.

Background: The need for eye tissue for use in sight saving and sight restoring surgery is a global issue. Approximately 53% of the world's population has no access to interventions such as corneal transplantation. Low levels of eye tissue impact on service providers such as National Health Service Blood and Transplant who aim to achieve a weekly stock of 350 eyes but do not meet this target. Aim: Patients who die in hospice and palliative care settings could be potential donors; therefore the aim of this systematic scoping review was to identify the potential for eye donation and barriers toward it from these clinical contexts. Design: A scoping review following the Joanna Briggs scoping review methodology was applied to search the global literature. Results: 13 articles from the global literature were retrieved. Evidence indicate that 542 patients could potentially have donated their eyes. Key barriers to increasing eye donation include the reluctance of healthcare professionals to raise the option of eye donation and the evidenced lack of awareness of patients and family members about donation options and eligibility. This review also indicates a lack of clinical guidance drawn from high-quality evidence proposing interventions that could inform clinical practice and service development. Conclusion: The scoping review presented here provides an up-to-date view of the current potential for, perceptions toward, and practice underpinning offering the option of eye donation to dying patients and their family members in hospice and palliative care context.

Ethnographic study of ICT-supported collaborative work routines in general practice.

BACKGROUND: Health informatics research has traditionally been dominated by experimental and quasi-experimental designs. An emerging area of study in organisational sociology is routinisation (how collaborative work practices become business-as-usual). There is growing interest in the use of ethnography and other in-depth qualitative approaches to explore how collaborative work routines are enacted and develop over time, and how electronic patient records (EPRs) are used to support collaborative work practices within organisations. METHODS/DESIGN: Following Feldman and Pentland, we will use 'the organisational routine' as our unit of analysis. In a sample of four UK general practices, we will collect narratives, ethnographic observations, multi-modal (video and screen capture) data, documents and other artefacts, and analyse these to map and compare the different understandings and enactments of three common routines (repeat prescribing, coding and summarising, and chronic disease surveillance) which span clinical and administrative spaces and which, though 'mundane', have an important bearing on quality and safety of care. In a detailed qualitative analysis informed by sociological theory, we aim to generate insights about how complex collaborative work is achieved through the process of routinisation in healthcare organisations. DISCUSSION: Our study offers the potential not only to identify potential quality failures (poor performance, errors, failures of coordination) in collaborative work routines but also to reveal the hidden work and workarounds by front-line staff which bridge the model-reality gap in EPR technologies and via which "automated" safety features have an impact in practice.

Creating pre-conditions for change in clinical practice: the influence of interactions between multiple contexts and human agency.

PURPOSE: The purpose of this paper is to explore what happens when changes to clinical practice are proposed and introduced in healthcare organisations. The authors use the implementation of Treatment Escalation Plans to explore the dynamics shaping the translational journey of a complex intervention from research into the everyday context of real-world healthcare settings. DESIGN/METHODOLOGY/APPROACH: A qualitative instrumental collective case study design was used. Data were gathered using qualitative interviews (n = 36) and observations (n = 46) in three English acute hospital trusts. Normalisation process theory provided the theoretical lens and informed data collection and analysis. FINDINGS: While each organisation faced the same translational problem, there was variation between settings regarding adoption and implementation. Successful change was dependent on participants' ability to manage and shape contexts and the work this involved was reliant on individual capacity to create a new, receptive context for change. Managing contexts to facilitate the move from research into clinical practice was a complex interactive and iterative process. PRACTICAL IMPLICATIONS: The paper advocates a move away from contextual factors influencing change and adoption, to contextual patterns and processes that accommodate different elements of whole systems and the work required to manage and shape them. ORIGINALITY/VALUE: The paper addresses important and timely issues of change in healthcare, particularly for new regulatory and service-oriented processes and practices. Insights and explanations of variations in implementation are revealed which could contribute to conceptual generalisation of context and implementation.

Managing patient preferences and clinical responses in acute pathophysiological deterioration: What do clinicians think treatment escalation plans do?

Treatment Escalation Plans (TEPs) are paper and electronic components of patients' clinical record that are intended to encourage patients and caregivers to contribute in advance to decisions about treatment escalation and de-escalation at times of loss of capacity. There is now a voluminous literature on patient decision-making, but in this qualitative study of British clinicians preparing to implement a new TEP, we focus on the ways that they understood it as much more than a device to promote patient awareness of the potential for pathophysiological deterioration and to elicit their preferences about care. Working through the lens of Callon's notion of agencements, and elements of May and Finch's Normalisation Process Theory, we show how clinicians saw the TEP as an organising device that enabled translation work to elicit individual preferences and so mitigate risks associated with decision-making under stress; and transportation work to make possible procedures that would transport agreed patterns of collective action around organisations and across their boundaries and to mitigate risks that resulted from relational and informational fragmentation. The TEP promoted these shifts by making possible the restructuring of negotiated obligations between patients, caregivers, and professionals, and by restructuring practice governance through promoting rules and resources that would form expectations of professional behaviour and organisational activity.

Death and dying in prehospital care: what are the experiences and issues for prehospital practitioners, families and bystanders? A scoping review.

OBJECTIVE: To identify the factors that shape and characterise experiences of prehospital practitioners (PHPs), families and bystanders in the context of death and dying outside of the hospital environment where PHPs respond. DESIGN: A scoping review using Arksey and O'Malley's five-stage framework. Papers were analysed using thematic analysis. DATA SOURCES: MEDLINE; Embase; CINAHL; Scopus; Social Sciences Citation Index (Web of Science), ProQuest Dissertations & Theses A&I (Proquest), Health Technology Assessment database; PsycINFO; Grey Literature Report and PapersFirst were searched from January 2000 to May 2019. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: Qualitative and mixed methods studies reporting the experiences of PHPs, families and bystanders of death and dying in prehospital settings as a result of natural causes, trauma, suicide and homicide, >18 years of age, in Europe, USA, Canada, Australia and New Zealand. RESULTS: Searches identified 15 352 papers of which 51 met the inclusion criteria. The review found substantial evidence of PHP experiences, except call handlers, and papers reporting family and bystander experiences were limited. PHP work was varied and complex, while confident in clinical work, they felt less equipped to deal with the emotion work, especially with an increasing role in palliative and end-of-life care. Families and bystanders reported generally positive experiences but their support needs were rarely explored. CONCLUSIONS: To the best of our knowledge this is the first review that explores the experiences of PHPs, families and bystanders. An important outcome is identifying current gaps in knowledge where further empirical research is needed. The paucity of evidence suggested by this review on call handlers, families and bystanders presents opportunities to investigate their experiences in greater depth. Further research to address the current knowledge gaps will be important to inform future policy and practice.

Exploring maintenance of physical activity behaviour change among people living with and beyond gastrointestinal cancer: a cross-sectional qualitative study and typology.

OBJECTIVES: In the last decade, there has been a rapid expansion of physical activity (PA) promotion programmes and interventions targeting people living with and beyond cancer (LWBC). The impact that these initiatives have on long-term maintenance of PA remains under-researched. This study sought to explore the experiences of participants in order to characterise those who have and have not successfully sustained increases in PA following participation in a PA intervention after a diagnosis of gastrointestinal (GI) cancer, and identify barriers and facilitators of this behaviour. DESIGN: Cross-sectional qualitative study. Semi-structured interviews with participants who had previously taken part in a PA programme in the UK, explored current and past PA behaviour and factors that promoted or inhibited regular PA participation. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis. Themes and subthemes were identified. Differences between individuals were recognised and a typology of PA engagement was developed. PARTICIPANTS: Twenty-seven individuals (n=15 male, mean age=66.3 years) with a diagnosis of GI cancer who had participated in one of four interventions designed to encourage PA participation. SETTING: UK. RESULTS: Seven themes were identified: disease processes, the role of ageing, emotion and psychological well-being, incorporating PA into everyday life, social interaction, support and self-monitoring and competing demands. A typology with three types describing long-term PA engagement was generated: (1) maintained PA, (2) intermittent PA, (3) low activity. Findings indicate that identifying an enjoyable activity that is appropriate to an individual's level of physical functioning and is highly valued is key to supporting long-term PA engagement. CONCLUSION: The typology described here can be used to guide stratified and personalised intervention development and support sustained PA engagement by people LWBC.

Patients and informal caregivers' experiences of burden of treatment in lung cancer and chronic obstructive pulmonary disease (COPD): a systematic review and synthesis of qualitative research.

OBJECTIVE: To identify, characterise and explain common and specific features of the experience of treatment burden in relation to patients living with lung cancer or chronic obstructive pulmonary disease (COPD) and their informal caregivers. DESIGN: Systematic review and interpretative synthesis of primary qualitative studies. Papers were analysed using constant comparison and directed qualitative content analysis. DATA SOURCES: CINAHL, EMBASE, MEDLINE, PsychINFO, Scopus and Web of Science searched from January 2006 to December 2015. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: Primary qualitative studies in English where participants were patients with lung cancer or COPD and/or their informal caregivers, aged >18 years that contain descriptions of experiences of interacting with health or social care in Europe, North America and Australia. RESULTS: We identified 127 articles with 1769 patients and 491 informal caregivers. Patients, informal caregivers and healthcare professionals (HCPs) acknowledged lung cancer's existential threat. Managing treatment workload was a priority in this condition, characterised by a short illness trajectory. Treatment workload was generally well supported by an immediacy of access to healthcare systems and a clear treatment pathway. Conversely, patients, informal caregivers and HCPs typically did not recognise or understand COPD. Treatment workload was balanced with the demands of everyday life throughout a characteristically long illness trajectory. Consequently, treatment workload was complicated by difficulties of access to, and navigation of, healthcare systems, and a fragmented treatment pathway. In both conditions, patients' capacity to manage workload was enhanced by the support of family and friends, peers and HCPs and diminished by illness/smoking-related stigma and social isolation. CONCLUSION: This interpretative synthesis has affirmed significant differences in treatment workload between lung cancer and COPD. It has demonstrated the importance of the capacity patients have to manage their workload in both conditions. This suggests a workload which exceeds capacity may be a primary driver of treatment burden. PROSPERO REGISTRATION NUMBER: CRD42016048191.

Mentorship in contemporary practice: the experiences of nursing students and practice mentors.

AIM: This paper explores the role of the mentor in contemporary nursing practice in the UK. It presents findings from a recent study which investigated the impact of a locality-based nursing education initiative on students, practice mentors and academic staff and draws on another study, conducted in the same setting and two Australian sites, to examine the perceptions of nursing students and mentors. BACKGROUND: Within nursing, mentorship is integral to students' clinical placement experiences and has attracted increasing interest among researchers. Despite a plethora of studies focussing on mentoring and its nature and application within the practice setting, limited attention has been paid to the extent to which guidelines provided by regulatory bodies for nursing inform and influence the practice of mentoring in contemporary health-care settings. DESIGN: The study used a two-phased design with data on mentorship being focussed on the second phase. METHOD: Data were collected using an online survey questionnaire of pre-qualifying students and a postal questionnaire for practice mentors. FINDINGS: The findings highlight the importance of mentorship for prequalifying students and emphasise the need to provide mentors with adequate preparation and support. They confirm previous research, but also highlight improvements in bridging the gap between rhetoric and reality for mentorship. Results are further strengthened when compared with those of the second study. CONCLUSIONS: Findings provide new evidence of a narrowing of the gap between the theory and practice of mentoring and for the continuing implementation of national standards to clarify the roles and responsibilities of the mentor. They also suggest the benefits of developing such standards in countries with similar systems of support for nursing students. RELEVANCE TO CLINICAL PRACTICE: Mentorship is pivotal to students' clinical experiences and is instrumental in preparing them for their role as confident and competent practitioners.

Escalation-related decision making in acute deterioration: a retrospective case note review.

AIM: To describe how decision making inter-relates with the sequence of events in individuals who die during admission and identify situations where formal treatment escalation plans (TEPs) may have utility. DESIGN AND METHODS: A retrospective case note review using stratified sampling. Two data analysis methods were applied concurrently: directed content analysis and care management process mapping via annotated timelines for each case. Analysis was followed by expert clinician review (n=7), contributing to data interpretation. SAMPLE: 45 cases, age range 38-96 years, 23 females and 22 males. Length of admission ranged from <24 hours to 97 days. RESULTS: Process mapping led to a typology of care management, encompassing four trajectories: early de-escalation due to catastrophic event; treatment with curative intent throughout; treatment with curative intent until significant point; and early treatment limits set. Directed content analysis revealed a number of contextual issues influencing decision making. Three categories were identified: multiple clinician involvement, family involvement and lack of planning clarity; all framed by clinical complexity and uncertainty. CONCLUSIONS: The review highlighted the complex care management and related decision-making processes for individuals who face acute deterioration. These processes involved multiple clinicians, from numerous specialities, often within hierarchical teams. The review identified the need for visible and clear management plans, in spite of the frame of clinical uncertainty. Formal TEPs can be used to convey such a set of plans. Opportunities need to be created for patients and their families to request TEPs, in consultation with the clinicians who know them best, outside of the traumatic circumstances of acute deterioration.

Work of being an adult patient with chronic kidney disease: a systematic review of qualitative studies.

INTRODUCTION: Chronic kidney disease (CKD) requires patients and caregivers to invest in self-care and self-management of their disease. We aimed to describe the work for adult patients that follows from these investments and develop an understanding of burden of treatment (BoT). METHODS: Systematic review of qualitative primary studies that builds on EXPERTS1 Protocol, PROSPERO registration number: CRD42014014547. We included research published in English, Spanish and Portuguese, from 2000 to present, describing experience of illness and healthcare of people with CKD and caregivers. Searches were conducted in MEDLINE, Embase, CINAHL Plus, PsycINFO, Scopus, Scientific Electronic Library Online and Red de Revistas Científicas de América Latina y el Caribe, España y Portugal. Content was analysed with theoretical framework using middle-range theories. RESULTS: Searches resulted in 260 studies from 30 countries (5115 patients and 1071 carers). Socioeconomic status was central to the experience of CKD, especially in its advanced stages when renal replacement treatment is necessary. Unfunded healthcare was fragmented and of indeterminate duration, with patients often depending on emergency care. Treatment could lead to unemployment, and in turn, to uninsurance or underinsurance. Patients feared catastrophic events because of diminished financial capacity and made strenuous efforts to prevent them. Transportation to and from haemodialysis centre, with variable availability and cost, was a common problem, aggravated for patients in non-urban areas, or with young children, and low resources. Additional work for those uninsured or underinsured included fund-raising. Transplanted patients needed to manage finances and responsibilities in an uncertain context. Information on the disease, treatment options and immunosuppressants side effects was a widespread problem. CONCLUSIONS: Being a person with end-stage kidney disease always implied high burden, time-consuming, invasive and exhausting tasks, impacting on all aspects of patients' and caregivers' lives. Further research on BoT could inform healthcare professionals and policy makers about factors that shape patients' trajectories and contribute towards a better illness experience for those living with CKD. PROSPERO REGISTRATION NUMBER: CRD42014014547.