Dr Anna Cox

Intensive care unit (ICU) nurses were at the forefront of patient care during the coronavirus (COVID-19) pandemic. To date, no studies have explored what it meant to be a ‘good nurse’ in this unique and challenging context. As such, the aim of this study was to construct the meaning of the ‘good nurse’ in ICUs during a pandemic. Semi-structured interviews were conducted with 25 ICU nurses from three ICUs in Kuwait, who had worked during the COVID-19 pandemic. The data were analysed using Charmaz’s grounded theory methodology. The analysis showed that the good ICU nurse was defined by their sense of duty, which motivated compassionate and dedicated patient care. However, the nurses’ attempts to demonstrate virtue also had negative consequences for them. Selflessness led to unsustainable self-sacrifice, empathy led to emotional labour, and efforts to remain patient and respectful led to exhaustion as the nurses found themselves under increasing pressure. Attempts to remain mentally strong may have partially protected them from stress, but also deprived them of an outlet for authentic emotional expression and support. Ultimately, their efforts to preserve their quality of patient care despite the numerous challenges of the pandemic came at an increasing cost, and resulted in moral distress and impaired well-being.

Background . There are well-established, persistent inequities in cancer care and cancer outcomes within and between countries. The aim of this article is to explore how implementation theory, specifically the Consolidated Framework for Implementation Research (CFIR), alongside coproduction principles, could be used to maximise the effectiveness of innovations with a vision of reducing inequity in cancer care. Methods. Workshops were conducted with partners from US, Australia, and UK, participating in the University Global Partnership Network (UGPN), which funded the collaboration. From these workshops, three case studies were identified and the framework was applied to identify ways of using CFIR to maximise the effectiveness of innovations. Results. The three case studies focused on human papillomavirus (HPV) testing and vaccination, participation in clinical trials, and use of translation services. We identified opportunities, for each of the case studies, where CFIR could be applied to improve implementation and proposed recommendations to ensure effective implementation of innovations using CFIR domains, including individual constructs (e.g., awareness and cultural competence), inner setting constructs (e.g., technology infrastructure), and outer setting constructs (e.g., how services are monitored, evaluated, and commissioned). Conclusions. Applying CFIR as an implementation framework offers a structured and holistic approach to consider how to maximise the effectiveness of innovations in the context of reducing inequities in cancer care. Working with other countries to apply this framework also provides a uniform approach to understand and reduce inequities across a range of innovations and address the global mission to improve cancer care for all.

This publication is the Russian translation of the Plain Language Summary (PLS) of the Cochrane Systematic Review: Ream E, Hughes AE, Cox A, Skarparis K, Richardson A, Pedersen VH, Wiseman T, Forbes A, Bryant A. Telephone interventions for symptom management in adults with cancer. Cochrane Database of Systematic Reviews 2020, Issue 6. Art. No.: CD007568. DOI: 10.1002/14651858.CD007568.pub2

Problem: Parents with learning disabilities are often disadvantaged and their needs not well understood in maternity services. Background: Despite a global vision to improve maternity care, current evidence

Globally, life expectancy is increasing as is the need for effective care responses to chronic health condition, global emergencies and health disparities. Alongside this, is a shortage of skilled care-givers. This 4-country qualitative study investigated Generation Z’s (the next generation to join the workforce) views of ‘care’ and ‘care careers’. Four cross-cultural themes emerged: conceptualising care; objects and subjects of care; recognising challenges of care; and appreciating care work. Themes, discussed in relation to Tronto’s analysis of care, illuminate Generation Z’s commitment to care and highlight the need for organisational and political action to attract young people to care careers.

There has been little previous scholarship regarding the aims, options and impact of ethics education on residential care-givers. This manuscript details findings from a pragmatic cluster trial evaluating the impact of three different approaches to ethics education. The focus of the article is on one of the interventions, an immersive simulation experience. The simulation experience required residential care-givers to assume the profile of elderly care-recipients for a 24-hr period. The care-givers were student nurses. The project was reviewed favourably by a university ethics committee, and participants provided informed consent. Data from six postsimulation experience focus groups were analysed thematically and three themes were identified: the experience of vulnerability, dignity in care and the organisation of care. Findings suggest that the immersive simulation experience had a powerful immediate impact as participants described epiphanous insights relating to their care experiences. It is suggested that reflecting on and recording epiphanous events has the potential to sustain ethical care practices. Further research is required to evaluate the impact of different ethics education interventions in different cultural contexts. Exploration is also required regarding the meaning and significance of care epiphanies, those “most delicate and evanescent of moments,” for the sustainability of ethical care.

Background: Despite compelling evidence from the US of ethnic inequalities in physical functioning and ethnic differences in risk factors for poor physical functioning, very little is known about ethnic differences in the UK. Furthermore, the life stage at which these ethnic differentials are first observed has not been examined. Methods: Using cross-sectional data from Wave 1 of the UK Household Longitudinal Study (UKHLS), we compared self-reported physical functioning among 35,816 White British, 4450 South Asian and 2512 African Caribbean men and women across different stages of adulthood (young adulthood, early middle age, late middle age, older age). Regression analyses examined ethnic differences in functional limitations, with adjustment for socioeconomic and clinical covariates. Ethnicity by sex and ethnicity by age-group interactions were examined, and subgroup heterogeneity was explored. Results: Compared with White British adults over the age of 60, older South Asian men and women reported higher odds of functional limitations (OR 2.77 (95% CI: 2.00-3.89) and OR 3.99 (2.61-6.10) respectively); these ethnic differentials were observed as early as young adulthood. Young African Caribbean men had lower odds of functional limitations than White British men (OR 0.56 (0.34-0.94)), yet African Caribbean women reported higher odds of functional limitations in older age (OR 1.84 (1.21-2.79)). Conclusions: There is an elevated risk of functional limitations relating to ethnicity, even in young adulthood where the impact on future health and socioeconomic position is considerable. When planning and delivering health care services to reduce ethnic inequalities in functional health, the intersectionality with age and sex should be considered.

Background High rates of poor mental health in healthcare staff threatens the quality and sustainability of healthcare delivery. Multi-factorial causes include the nature and structure of work. We conducted a critical review of UK NHS (England) data pertaining to: doctors, nurses, midwives and paramedics. Sources of data Key demographic, service architecture (structural features of work) and well-being indicators were identified and reviewed by a stakeholder group. Data searching prioritized NHS whole workforce sources (focusing on hospital and community health services staff), which were rated according to strength of evidence. Findings Key differences between professions were: (i) demographics: gender (nursing and midwifery female-dominated, doctors and paramedics more balanced); age (professions other than doctors had ageing workforces); ethnicity (greater diversity among doctors and nurses); (ii) service architecture: despite net staffing growth, turnover and retention were problematic in all professions; 41.5% doctors were consultants but smaller proportions held high grade/band roles in other professions; salaries were higher for doctors; (iii) well-being: all reported high job stress, particularly midwives and paramedics; sickness absence rates for nurses, midwives and paramedics were three times those of doctors, and presenteeism nearly double. Growing points Sociocultural factors known to increase risk of poor mental health may explain some of the differences reported between professions. These factors and differences in service architecture are vital considerations when designing strategies to improve well-being. Areas timely for developing research Multi-level systems approaches to well-being are required that consider intersectionality and structural differences between professions; together with inter-professional national databases to facilitate monitoring.

Despite directives to improve maternity care in general and to improve care for parents with learning disabilities, the maternity experience of parents with learning disabilities is often poor and lacking reasonable adjustments to care. The objective of this study was to develop resources - in collaboration with key stakeholders - to support the workforce in delivering good maternity care to parents with learning disabilities. A two-phase mixed-methods study. Phase 1: 16 key stakeholders (health and social care professionals, parents with learning disabilities and their informal supporters/carers) were interviewed to understand views of best practice and inform resource development. Phase 2: 20 healthcare professionals engaged with the resources and gave feedback via online survey or discussion group to further refine them. Thematic analysis of key stakeholder interviews indicated that good maternity care for parents with learning disabilities requires a positive and proactive approach to identifying need; reasonable adjustments to communication and providing information; and professionals working together to support and enable parents. Health and social care professionals identified barriers to the delivery of good maternity care for parents with learning disabilities, including how to identify whether a parent has learning disabilities. Professionals in maternity services require additional resources to ensure parents’ needs are recognised and they are provided with personalised preparation for parenthood and sufficient support. The Together Toolkit and Maternity Passport were coproduced to support the workforce to deliver good maternity care to parents with learning disabilities, these resources are free and accessible for use [https://www.surrey.ac.uk/research-projects/together-project-supporting-delivery-goodpractice-maternity-services-parents-learning-disabilities]. Further evaluation will explore acceptability and perceived impact of these resources in maternity services.

Background: High rates of poor mental health in healthcare staff threatens the quality and sustainability of healthcare delivery. Multi-factorial causes include the nature and structure of work. We conducted a critical review of UK NHS (England) data pertaining to: doctors, nurses, midwives and paramedics. Sources of data: Key demographic, service architecture (structural features of work) and wellbeing indicators were identified and reviewed by a stakeholder group. Data searching prioritised NHS whole workforce sources (focusing on hospital and community health services staff), which were rated according to strength of evidence. Findings: Key differences between professions were: (i) Demographics: gender (nursing and midwifery female-dominated, doctors and paramedics more balanced); age (professions other than doctors had ageing workforces); ethnicity (greater diversity among doctors and nurses); (ii) Service architecture: despite net staffing growth, turnover and retention were problematic in all professions; 41.5% doctors were consultants but smaller proportions held high grade/band roles in other professions; salaries were higher for doctors; (iii) Wellbeing: all reported high job stress, particularly midwives and paramedics; sickness absence rates for nurses, midwives and paramedics were three times those of doctors, and presenteeism nearly double. Growing points: Socio-cultural factors known to increase risk of poor mental health may explain some of the differences reported between professions. These factors and differences in service architecture are vital considerations when designing strategies to improve wellbeing. Areas timely for developing research: Multi-level systems approaches to wellbeing are required that consider intersectionality and structural differences between professions; together with interprofessional national databases to facilitate monitoring.

Background: The physical health of people with intellectual disabilities has been identified as an area of ongoing concern and priority. Research has increasingly focused on cancer, with studies indicating people with intellectual disabilities are at an increased risk of cancer and of mortality, compared with the general population. This review aims to systematically identify and synthesize the published academic literature exploring cancer risk-factor and symptom awareness among people with intellectual disabilities, carers, and healthcare professionals. Methods: In line with Arksey and O’Malley’s (2005) framework for scoping reviews, five incremental stages were followed: (1) identify research question, (2) identifying relevant studies, (3) study selection, (4) extracting and charting of data, (5) collating, summarizing, and reporting results. Findings were reported according to the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for scoping reviews, PRISMA-Scr. Results: The search strategy identified 352 records, 16 records met all eligibility criteria and were included for review. The studies address a range of areas including knowledge and awareness of cancer risk-factors and symptoms, and interventions to promote awareness of cancer. Conclusions: Cancer risk-factor and symptom awareness is low among adults with intellectual disabilities, paid and unpaid carers, and HCPs. Theoretically underpinned, co-designed tools and interventions to improve awareness are lacking. There is uncertainty surrounding how to best support people with intellectual disabilities in raising cancer awareness, even within the professional healthcare environment. There is a predominance of research on breast cancer awareness. Future studies focusing on other cancers is needed to build a complete picture of awareness among adults with intellectual disabilities, paid and unpaid carers, and HCPs.

Background The work demands of critical care can be a major cause of stress in intensive care unit (ICU) professionals and lead to poor health outcomes. In the process of recovery from work, psychological rumination is considered to be an important mediating variable in the relationship between work demands and health outcomes. This study aimed to extend our knowledge of the process by which ICU stressors and differing rumination styles are associated with burnout, depression and risk of psychiatric morbidity among ICU professionals. Methods Ninety-six healthcare professionals (58 doctors and 38 nurses) who work in ICUs in the UK completed a questionnaire on ICU-related stressors, burnout, work-related rumination, depression and risk of psychiatric morbidity. Results Significant associations between ICU stressors, affective rumination, burnout, depression and risk of psychiatric morbidity were found. Longer working hours were also related to increased ICU stressors. Affective rumination (but not problem-solving pondering or distraction detachment) mediated the relationship between ICU stressors, burnout, depression and risk of psychiatric morbidity, such that increased ICU stressors, and greater affective rumination, were associated with greater burnout, depression and risk of psychiatric morbidity. No moderating effects were observed. Conclusions Longer working hours were associated with increased ICU stressors, and increased ICU stressors conferred greater burnout, depression and risk of psychiatric morbidity via increased affective rumination. The importance of screening healthcare practitioners within intensive care for depression, burnout and psychiatric morbidity has been highlighted. Future research should evaluate psychological interventions which target rumination style and could be made available to those at highest risk. The efficacy and cost effectiveness of delivering these interventions should also be considered.

Purpose: Obtain consensus on research priorities for cancer nursing research in the UK. Design: A 3-round online Delphi survey Setting: Oncology nurses were invited via the UK Oncology Nursing Society (UKONS) database. Patient participation was invited through patient organisations. Sample: 50 oncology nurses and 18 patients Methods: Eligible and consenting individuals reported five priorities for cancer nursing research (round 1), rated their level of agreement with them (round 2), and re-stated/revised their responses in light of the group’s (round 3). Consensus was defined as 80% agreement. Findings: Consensus was reached on 50/107 research priorities. These priorities reflected the entire cancer pathway, from diagnosis to palliative care. Highest agreement was reached within and across groups on the need for research relating to prevention, screening and early diagnosis and psychological care across the cancer trajectory. Little consensus was reached regarding symptoms and sideeffects. There was some evident divergence: only patients reached consensus regarding palliative care research and only nurses on eHealth and technology research. Conclusions: Oncology nurses and patients do not necessarily prioritise the same research areas. Prevention, screening and early diagnosis are considered of highest priority for future research across both oncology nurses and patients. Implications for nursing: Patients usually play little part in priority setting for research. This study provided the opportunity for meaningful patient and nurse involvement in setting a research agenda for cancer nursing that is relevant and beneficial to both cancer nurses and patients.

E-technology is increasingly used in oncology to obtain self-reported symptom assessment information from patients, although its potential to provide a clinical monitoring tool in palliative care is relatively unexplored in the UK. This study aimed to evaluate the support provided to lung cancer patients post palliative radiotherapy using a computerized assessment tool and to determine the clinical acceptability of the tool in a palliative care setting. However, of the 17 clinicians identified as managing patients who met the initial eligibility criteria for the study, only one clinician gave approval for their patient to be contacted regarding participation, therefore the benefits of this novel technology could not be assessed. Thirteen key clinicians from the centres involved in the study were subsequently interviewed. They acknowledged potential benefits of incorporating computerized patient assessment from both a patient and practice perspective, but emphasized the importance of clinical intuition over standardized assessment. Although clinicians were positive about palliative care patients participating in research, they felt that this population of patients were normally too old, with too rapidly deteriorating a condition to participate in a study using e-technology. In order to encourage acceptance of e-technology within palliative care, emphasis is needed on actively promoting the contribution of technologies with the potential to improve patient outcomes and the patient experience.

To find out if an immersive simulation intervention would be feasible in a domiciliary care context, and to explore what effect, if any, the intervention would have on the domiciliary caregivers who participated. This was an immersive simulation pilot project in which six domiciliary caregivers (simulants) assumed the profile of people receiving domiciliary care. Second-year and third-year nursing students provided domiciliary care to the simulants, with support from a registered nurse. Thematic analysis was used to identify themes from post-intervention semi-structured interviews and a focus group with the simulants. Five main themes were identified: recognising the need for stimulation; reflecting on the importance of person-centred communication; the value of companionship and confidence in caregivers; understanding boundaries and vulnerabilities; and empathy and practice changes. Following the intervention, most of the simulants reported that they re-examined the care they provide from the care recipient's perspective, and were increasingly attuned to the wishes of care recipients. The findings of this pilot project suggest that immersive simulation could be a valuable intervention in the domiciliary care context. The feedback from simulants suggests that it is beneficial to provide domiciliary caregivers with the opportunity to assume the role of care recipients, and enables them to reflect on the complexity and value of the care that they provide. The findings indicate that important elements of ethical care include domiciliary caregivers having adequate time to deliver care and develop trust, which can assist in fostering effective caregiver-care recipient relationships.

Background: Net survival rates for cancer are increasing worldwide, placing a strain on health service provision. There is a drive to transfer care of cancer survivors - individuals living with and beyond cancer - to the community and encourage them to play an active role in their own care. Telehealth, the use of technology in remote exchange of data and communication between patients and healthcare professionals, is an important contributor to this evolving model of care and may offer additional benefits to cancer survivors. Telehealth is a complex intervention and understanding patient experiences of it is important in evaluating its impact. However, a wider view of patient experience is lacking as qualitative studies detailing cancer survivor engagement with telehealth have yet to be synthesised. Objective: Systematically identify, appraise and synthesise qualitative research evidence on the experiences of adult cancer survivors participating in telehealth intervention(s), to characterise the patient experience of telehealth interventions for this group. Methods: Medline (PubMed), PsychINFO, CINAHL (Cumulative Index for Nursing and Allied Health Professionals), Embase and Cochrane Central Register of Controlled Trial were searched on 14th August 2015 and 8th March 2016 for English-language papers published between 2006 and 2016. Inclusion criteria were: adult cancer survivors aged 18 and over; cancer diagnosis; experience of participating in a telehealth intervention (defined as remote communication and/or remote monitoring with a healthcare professional(s) delivered by telephone, internet, or hand-held/mobile technology); reporting qualitative data including verbatim quotes. An adapted Critical Appraisal Skill Programme (CASP) Checklist for Qualitative Research was used to assess paper quality. The results section of each included article was coded line by line and all papers underwent inductive analysis, involving comparison, re-examination and grouping of codes to develop descriptive themes. Analytical themes were developed through an iterative process of reflection on, and interpretation of, the descriptive themes within and across studies. Results: 22 papers were included. Three analytical themes emerged, each with three descriptive subthemes: 1. Influence of telehealth on the disrupted lives of cancer survivors a. Convenience b. Independence c. Burden 2. Personalised care in a virtual world a. Time b. Space c. The human factor 3. Remote reassurance – a safety net of healthcare professional connection a. Active connection b. Passive connection c. Slipping through the net Telehealth interventions represent a convenient approach which can potentially minimise treatment burden and disruption to cancer survivors’ lives. Telehealth interventions can facilitate an experience of personalised care and reassurance for those living with and beyond cancer, but it is important to consider individual factors when tailoring interventions to ensure engagement promotes benefit rather than burden. Conclusions: Telehealth interventions can provide cancer survivors with both independence and reassurance; both important for everyday life or wellbeing. Future telehealth interventions need to be developed iteratively and in collaboration with a broad range of cancer survivors to maximise engagement and benefit.

PURPOSE: The concept of providing personalised care plans for cancer survivors is receiving increasing attention; a recognised element of a care plan is to provide an indication of the risks and consequences of treatment. This paper reports health care professional (HCP) response to providing cancer survivors with information on potential late effects of their cancer treatment. METHODS: Eighteen HCPs from five cancer centres and three general practices in the UK completed semi-structured interviews which were digitally recorded, transcribed and qualitatively analysed using framework analysis. RESULTS: HCPs' view of health care was that it is currently focused on acute care and needs are responded to as they may arise, including those which are late effects of cancer treatments. The concept of pre-empting a discussion of potential late effects during the survivorship phase was felt to be discordant with this approach and could impact on adjustment to life after cancer treatment. CONCLUSION: Providing cancer survivors with information on potential late effects requires further consideration. Evidence for survivor preference for late effect information and the benefit afforded to survivors who receive it could inform the practice of HCPs. If a culture of proactivity is to be encouraged regarding discussions of future potential risk, HCPs may need support in considering ways of presenting survivors with reality whilst being mindful of their need to retain hope during the survivorship phase.

Background: Intergenerational playgroups (IPGs) facilitate social interaction for older people in residential care homes but there is a lack of research considering their implementation. Aim: To report care home staff perspective of IPGs in England to guide implementation. Method: A qualitative study; 10 face-to-face interviews were conducted with staff in four care homes by a district nurse. Findings: IPGs are considered a low-cost intervention with high mutual benefit to both ‘young’ and ‘old’ participants but focus must be given to developing staff acceptance at a wider level than those directly involved in delivery of IPGs to support their sustainability. Conclusion: This article provides valuable information for care homes who are considering how to encourage social participation and reduce loneliness in their residents.

Background Midwives lack the confidence and competence to identify and support people with learning disabilities, putting this population at risk of inequitable maternity care. Objectives To co-produce, co-deliver and evaluate maternity focused learning disability awareness training for student midwives, in collaboration with experts-by-experience (people with learning disabilities). Design Multi-methods study evaluating the impact and acceptability of learning disability awareness training. Settings University in south-east England, UK. Participants 83 midwifery students and 7 experts-by-experience. Methods Midwifery students completed pre-post training surveys and a follow-up survey 3 months post training to substantiate longer-term impact. Experts-by-experience took part in qualitative interviews post training. Results Student-reported learning disability awareness was significantly higher across all domains post training and sustained at follow up. Students reported the most notable aspect of training was learning with and from people with learning disabilities. Three inter-related themes were constructed from interviews with experts-by-experience: reasonable adjustments to training and research processes; a positive social, emotional and learning experience; and perceptions of impact. Conclusions Findings from this study suggest that co-producing and co-delivering resources and education to an undergraduate midwifery workforce with people with lived experience, can have a profound impact on students and is also a positive experience for people with learning disabilities. The co-produced resources used in this training are free and accessible [https://www.surrey.ac.uk/togetherproject]. Further evaluation will explore acceptability and perceived impact of training and resources on other healthcare professionals working with maternity services.

Background There is an under-representation of Black, Asian and minority ethnic nurses in senior positions within the UK's national healthcare system. Objectives To understand student nurses' perspectives on the role of race and ethnicity on career expectations, course learning and delivery, and areas for additional training and skill development for all nurses in understanding structural inequalities in healthcare. Design Qualitative study involving semi-structured interviews. Settings University in south-east England, UK. Participants 15 nursing students (14 women, one man) from a range of ethnic backgrounds, age-groups and nationalities. Methods Interviews lasting 30–60 min were conducted with nursing students and thematic analyses undertaken. Results Four inter-related themes were constructed: altered career expectations, lack of understanding, absent discussion of racism and missing representation. Experiences of racism were not uncommon for students from Black, Asian and minority ethnic backgrounds and these experiences affected these students' career expectations. Students described a lack of understanding about racism and that it was a taboo topic on their course and in placements. Conclusions Findings highlight an urgent need for universities to challenge existing nursing curricula to ensure inclusive, anti-racist educational provision that works equitably for all future nurses. The importance of representation was highlighted among those who deliver courses, in the content of nursing curriculum through inclusive education, decolonised curricula and with student voices embedded to enable the development of culturally-competent nursing graduates.

Background The work demands of critical care can be a major cause of stress in intensive care unit (ICU) professionals and lead to poor health outcomes. In the process of recovery from work, psychological rumination is considered to be an important mediating variable in the relationship between work demands and health outcomes. This study aimed to extend our knowledge of the process by which ICU stressors and differing rumination styles are associated with burnout, depression and risk of psychiatric morbidity among ICU professionals. Methods Ninety-six healthcare professionals (58 doctors and 38 nurses) who work in ICUs in the UK completed a questionnaire on ICU-related stressors, burnout, work-related rumination, depression and risk of psychiatric morbidity. Results Significant associations between ICU stressors, affective rumination, burnout, depression and risk of psychiatric morbidity were found. Longer working hours were also related to increased ICU stressors. Affective rumination (but not problem-solving pondering or distraction detachment) mediated the relationship between ICU stressors, burnout, depression and risk of psychiatric morbidity, such that increased ICU stressors, and greater affective rumination, were associated with greater burnout, depression and risk of psychiatric morbidity. No moderating effects were observed. Conclusions Longer working hours were associated with increased ICU stressors, and increased ICU stressors conferred greater burnout, depression and risk of psychiatric morbidity via increased affective rumination. The importance of screening healthcare practitioners within intensive care for depression, burnout and psychiatric morbidity has been highlighted. Future research should evaluate psychological interventions which target rumination style and could be made available to those at highest risk. The efficacy and cost effectiveness of delivering these interventions should also be considered.

BACKGROUND: Intensive care units (ICUs) focus on treatment for those who are critically ill and interventions to prolong life. Ethical issues arise when decisions have to be made regarding the withdrawal and withholding of life-sustaining treatment and the shift to comfort and palliative care. These issues are particularly challenging for nurses when there are varying degrees of uncertainty regarding prognosis. Little is known about nurses' end-of-life (EoL) decision-making practice across cultures. OBJECTIVES: To understand nurses' EoL decision-making practices in ICUs in different cultural contexts. DESIGN: We collected and analysed qualitative data using Grounded Theory. SETTINGS: Interviews were conducted with experienced ICU nurses in university or hospital premises in five countries: Brazil, England, Germany, Ireland and Palestine. PARTICIPANTS: Semi-structured interviews were conducted with 51 nurses (10 in Brazil, 9 in England, 10 in Germany, 10 in Ireland and 12 nurses in Palestine). They were purposefully and theoretically selected to include nurses having a variety of characteristics and experiences concerning end-of-life (EoL) decision-making. METHODS: The study used grounded theory to inform data collection and analysis. Interviews were facilitated by using key questions. The comparative analysis of the data within and across data generated by the different research teams enabled researchers to develop a deeper understanding of EoL decision-making practices in the ICU. Ethical approval was granted in each of the participating countries and voluntary informed consent obtained from each participant. RESULTS: The core category that emerged was 'negotiated reorienting'. Whilst nurses do not make the 'ultimate' EoL decisions, they engage in two core practices: consensus seeking (involving coaxing, information cuing and voice enabling); and emotional holding (creating time-space and comfort giving). CONCLUSIONS: There was consensus regarding the core concept and core practices employed by nurses in the ICUs in the five countries. However, there were some discernible differences regarding the power dynamics in nurse-doctor relationships, particularly in relation to the cultural perspectives on death and dying and in the development of palliative care. The research suggests the need for culturally sensitive ethics education and bereavement support in different cultural contexts.

To develop, implement and evaluate a collaborative intervention in care homes seeking to increase the confidence and competence of staff in end of life care and enable more people to receive end of life care in their usual place of residence. Aim To develop, implement and evaluate a collaborative intervention in care homes seeking to increase the confidence and competence of staff in end of life care and enable more people to receive end of life care in their usual place of residence. Method A two-phase exploratory mixed methods design was used, evaluating the effect of an end of life care toolkit and associated training in care homes, facilitated by a specialist palliative care team. Six care homes in England were recruited to the intervention; 24 staff participated in discussion groups; 54 staff attended at least one training session; and pre- and post-intervention questionnaires were completed by 78 and 103 staff respectively. Results Staff confidence in receiving emotional and clinical support and managing end of life care symptoms increased post-intervention, but confidence in discussing death and dying with residents and relatives decreased. Audit data indicate greater reduction in the number of residents from participating care homes dying in hospital than those from comparison homes. Conclusion Collaborative end of life care interventions support care home staff to manage end of life and may enable residents to have choice about their place of death.

BACKGROUNDIntergenerational playgroups are a formalised way of bringing together older people and young children to 'play and interact'. They can facilitate social interaction and reduce loneliness for older people living in care homes. Although interest in intergenerational playgroups is increasing, there is a lack of research into their implementation. AIMTo explore staff's views on the implementation of intergenerational playgroups in care homes for older people. METHODA qualitative method was adopted. Face-to-face semi-structured interviews were undertaken with ten members of staff working in four care homes in a range of roles. FINDINGSParticipants considered intergenerational playgroups to be low-cost interventions with benefits for residents, children, parents or carers and the community. However, there did not appear to be a standardised format or guidance for implementing and delivering the intervention and participants felt that they received little support from colleagues or from executive leadership teams. CONCLUSIONTo support the effective implementation and the sustainability of intergenerational playgroups in care homes, there is a need to educate care home staff about their benefits and to develop guidance and national policies.

This study investigated how intensivists make decisions regarding withholding and withdrawing treatment for patients at the end of their lives. This involved completing in-depth interviews from two sites of the South of England, United Kingdom by twelve intensivists. The data collected by these intensivists were analysed using thematic analysis. This resulted in the identification of three themes: intensivists’ role, treatment effectiveness, and patients’ best interest. Transcending these were two overarching themes relating to the balance between quantity and quality of life, and the intensivists’ sense of responsibility versus burden. The results are considered in terms of making sense of death and the role of beliefs in the decision-making process.

Background People with cancer experience a variety of symptoms as a result of their disease and the therapies involved in its management. Inadequate symptom management has implications for patient outcomes including functioning, psychological well-being and quality of life (QoL). Attempts to reduce the incidence and severity of cancer symptoms have involved the development and testing of psycho-educational interventions to enhance patients' symptom self-management. With the trend for care to be provided nearer patients' homes, telephone-delivered psycho-educational interventions have evolved to provide support for the management of a range of cancer symptoms. Early indications suggest that these can reduce symptom severity and distress through enhanced symptom self-management. Objectives To assess the effectiveness of telephone-delivered interventions for reducing symptoms associated with cancer and its treatment. To determine which symptoms are most responsive to telephone interventions. To determine whether certain configurations (active ingredients, dosage) of telephone interventions mediate observed cancer symptom outcome effects. Search methods We searched the following databases: the Cochrane Central Register of Controlled Trials (CENTRAL; 2019, Issue 1) in the Cochrane Library; MEDLINE via OVID (1946 to January 2019); Embase via OVID (1980 to January 2019); CINAHL via Athens (1982 to January 2019); British Nursing Index (1984 to January 2019); and PsychINFO (1989 to January 2019). Additionally, we searched conference proceedings to identify published abstracts, and SIGLE and trial registers for unpublished studies. We also searched the reference lists of all included articles for additional relevant studies. Finally, we hand searched the following journals: Cancer, Journal of Clinical Oncology, Psycho-oncology, Cancer Practice, Cancer Nursing, Oncology Nursing Forum, Journal of Pain and Symptom Management, Palliative Medicine. Search was restricted to publications published in English. Selection criteria We included randomised control trials (RCTs) and quasi-RCTs which compared one or more telephone interventions with each other, or with other types of interventions (e.g. a face-to-face intervention) and/or usual care, with the stated aim of addressing any physical or psychological symptoms of cancer and its treatment, which recruited adult (over 18 years) men and women with a clinical diagnosis of cancer, regardless of tumour type, stage of cancer, type of treatment and time of recruitment (e.g. pre, during or post treatment). Data collection and analysis Two review authors independently selected articles, extracted data, and appraised methodological quality and risk of bias. Disagreements were resolved through discussion, involving the entire review team where necessary. Risk of bias was assessed using the Cochrane's risk of bias tool. We had planned to conduct meta-analyses using random effects models for symptoms where there were sufficient data to enable this. Heterogeneity between study outcomes was planned to be determined through visual inspection of forest plots and calculation of the I2 statistic. Where possible, outcomes are reported as standardised mean differences (SMDs) with 95% confidence intervals (CIs) and a descriptive synthesis of study findings is presented. Findings are reported on according to symptom addressed and intervention type (e.g. telephone only or telephone combined with other elements). As many studies had small samples, and baseline scores for study outcomes often varied for intervention and control groups, change scores and associated standard deviations were used. Main results Thirty-two studies were eligible for the review; most had moderate risk of bias, mostly related to blinding. Collectively they recruited 6250 people. Interventions were studied in people with a variety of cancer types and across the disease trajectory although many participants had breast cancer, early stage cancers and/or were starting treatment. Symptoms measured were anxiety, depression, emotional distress, uncertainty, fatigue, pain, sexuality-related symptoms and general symptom intensity and/or distress. Interventions were primarily (n = 24) delivered by nurses, most (n=16) had a background in oncology, research or psychiatry. Ten were delivered solely by telephone; the rest combined telephone with additional elements (face-to-face consultation, and digital/online/printed resources). Number of calls delivered ranged from 1 to 18; most provided 3 to 4 calls. Twenty‐one studies provided evidence on effectiveness of telephone‐delivered interventions and the majority appeared to reduce symptoms of depression compared to control. Nine studies contributed quantitative change scores (CSs) and associated standard deviation results (or these could be calculated). Likewise, many telephone interventions appeared effective when compared to control in reducing anxiety (16 studies; 5 contributed quantitative CS results); fatigue (9 studies; 6 contributed to quantitative CS results); and emotional distress (7 studies; 5 contributed quantitative CS results). Due to significant clinical heterogeneity with regards to interventions introduced, study participants recruited, and outcomes measured, meta‐analysis was not conducted. For other symptoms (uncertainty, pain, sexuality-related symptoms, dyspnoea and general symptom experience) there was limited evidence; meta-analysis was similarly not possible and the results from individual studies were largely conflicting making conclusions about their management through telephone-delivered intervention hard to draw. There was considerable heterogeneity across all trials for all outcomes. Overall, the certainty of the evidence was low for all outcomes in the review due to uncertainty over estimates. Outcomes were all downgraded due to concerns about overall risk of bias profiles being frequently unclear and due to inconsistencies in results and general heterogeneity. Unsubstantiated evidence suggests that telephone interventions in some capacity may have a place in symptom management for adults with cancer. However, in the absence of reliable and homogeneous evidence, caution is needed in interpreting the narrative synthesis. Further, there were no clear patterns across studies regarding which forms of interventions (telephone alone versus augmented with other elements) are most effective. It is impossible to conclude with any certainty which forms of telephone intervention are most effective in managing the range of cancer‐related symptoms that people with cancer experience. Authors' conclusions Telephone interventions provide a convenient way of supporting self-management of cancer-related symptoms in adults with cancer. They are becoming more important with the shift of care closer to patients' homes, need for resource/cost containment and potential for voluntary-sector providers to deliver healthcare interventions. There is some evidence supporting use of telephone-delivered interventions for symptom management in adults with cancer; most evidence relates to four commonly experienced symptoms - depression, anxiety, emotional distress and fatigue. Some telephone-delivered interventions were augmented by combining them with face-to-face meetings and provision of printed or digital materials. The review was unable to determine whether telephone alone or in combination with other elements provides optimal reduction in symptoms; it appears most likely that this will vary by symptom. It is noteworthy that, despite the potential for telephone interventions to deliver cost savings, none of the studies reviewed included any form of health economic evaluation. Further robust and adequately reported trials are needed across all cancer-related symptoms as the certainty of evidence generated in studies within this review was largely low to moderate, and reporting was of variable quality. Efforts are needed by researchers to reduce variability between studies in future. Studies in the review were characterised by both clinical and methodological diversity; the level of diversity hindered comparison across studies. At the very least, efforts should be made to standardise outcome measures. Finally, studies were compromised by having small samples, inadequate concealment of group allocation, lack of observer blinding and short length of follow up. Consequently, conclusions relating to symptoms most amenable to management by telephone-delivered intervention are tentative.

Background: With the right support, people with learning disabilities can be ‘good enough’ parents (Coren, Thomae, & Hutchfield, 2011; Murphy & Feldman, 2002). Parenting programmes exist to support parents and are made accessible for people with learning disabilities who are expecting a baby, but evaluation of the benefit of these interventions is poor due to a lack of accessible outcome measures (May & Harris, 2020; Wade, Llewellyn, & Matthews, 2008). The Tool to Measure Parenting Self-Efficacy in the antenatal period (TOPSE- ante-natal) measures the impact of parenting interventions on an individual’s self-efficacy during the ante-natal period. This study aimed to modify the TOPSE ante-natal tool through a process of inclusive research, to support a consistent approach to evaluating parenting interventions from the perspective of parents-to-be with learning disabilities. Methods: A two-phase study using interviews and discussion groups was conducted in a process of inclusive research to modify the TOPSE ante-natal tool. Phase one involved conducting eight cognitive interviews (interviews to understand how individuals process and recall information) with parents with learning disabilities. These were conducted remotely via Microsoft Teams, transcribed verbatim and analysed using content analysis (Krippendorff, 2013). Participants were recruited via snowballing techniques through the advisory groups’ networks. Phase two included three discussion groups with study collaborators and advisors (n=14) to assess the accessibility and acceptability of adaptations of the tool, each making further refinements for consideration. Findings: Interviews and discussion groups highlighted how parents-to-be with learning disabilities experienced some of the original TOPSE-ante-natal negative statements, including negative points on a Likert scale, difficult to comprehend. Figurative statements and unfamiliar words also caused confusion, and statements focused on pressures of parenting were experienced as confrontational by people with learning disabilities. Statements were removed or replaced and agreed upon in discussion groups to ensure the tool was accessible and meaningful to people with learning disabilities. Conclusions: We have used a process of inclusive research to modify a self-efficacy tool for parents-to-be with learning disabilities which is freely available on the TOPSE website (https://www.topse.org.uk/site/). Next steps are for this tool to be used and validated in future studies evaluating parenting interventions for people with learning disabilities. This will inform a knowledge base of what interventions should be used by practitioners who are supporting people with learning disabilities to prepare for parenthood.

Background: Infection is more frequent, and serious in people aged >65 as they experience non-specific signs and symptoms delaying diagnosis and prompt treatment. Monitoring signs and symptoms using decision support tools (DST) is one approach that could help improve early detection ensuring timely treatment and effective care. Objective: To identify and analyse decision support tools available to support detection of infection in older people (>65 years). Methods: A scoping review of the literature 2010-2021 following Arksey and O'Malley (2005) framework and PRISMA-ScR guidelines. A search of MEDLINE, Cochrane, EMBASE, PubMed, CINAHL, Scopus and PsycINFO using terms to identify decision support tools for detection of infection in people >65 years was conducted, supplemented with manual searches. Results: Seventeen papers, reporting varying stages of development of different DSTs were analysed. DSTs largely focussed on specific types of infection i.e. urine, respiratory, sepsis and were frequently hospital based (n=9) for use by physicians. Four DSTs had been developed in nursing homes and one a care home, two of which explored detection of non- specific infection. Conclusions: DSTs provide an opportunity to ensure a consistent approach to early detection of infection supporting prompt action and treatment, thus avoiding emergency hospital admissions. A lack of consideration regarding their implementation in practice means that any attempt to create an optimal validated and tested DST for infection detection will be impeded. This absence may ultimately affect the ability of the workforce to provide more effective and timely care, particularly during the current covid-19 pandemic.

Introduction In order to avoid unnecessary hospital admission and associated complications, there is an urgent need to improve the early detection of infection in nursing home residents. Monitoring signs and symptoms with checklists or aids called decision support tools may help nursing home staff to detect infection in residents, particularly during the current COVID-19 pandemic. We plan to conduct a survey exploring views and experiences of how infections are detected and managed in practice by nurses, care workers and managers in nursing homes in England and Sweden. Methods and analysis An international cross-sectional descriptive survey, using a pretested questionnaire, will be used to explore nurses, care workers and managers views and experiences of how infections are detected and managed in practice in nursing homes. Data will be analysed descriptively and univariate associations between personal and organisational factors explored. This will help identify important factors related to awareness, knowledge, attitudes, belief and skills likely to affect future implementation of a decision support tool for the early detection of infection in nursing home residents. Ethics and dissemination This study was approved using the self-certification process at the University of Surrey and Linköping University ethics committee (Approval 2018/514-32) in 2018. Study findings will be disseminated through community/stakeholder/service user engagement events in each country, publication in academic peer-reviewed journals and conference presentations. A LAY summary will be provided to participants who indicate they would like to receive this information. This is the first stage of a plan of work to revise and evaluate the Early Detection of Infection Scale (EDIS) tool and its effect on managing infections and reducing unplanned hospital admissions in nursing home residents. Implementation of the EDIS tool may have important implications for the healthcare economy; this will be explored in cost–benefit analyses as the work progresses.

There has been little previous research regarding the effectiveness of ethics education interventions for residential care‐givers. The Researching Interventions to Promote Ethics in social care project responded to the question: Which is the most effective ethics education intervention for care‐givers in residential social care? A pragmatic cluster trial explored the impact of three ethics education interventions for: (a) interactive face‐to‐face ethics teaching; (b) reflective ethics discussion groups; and (c) an immersive simulation experience. There was also a control arm (d). 144 trial participants were recruited from 39 residential care homes for older people in southern England. Change scores compared across intervention arms showed a significant reduction in work‐related moral stress in the teaching arm compared with control group (p = .03); there were no significant differences between control and intervention arms in change scores for moral sensitivity, interpersonal reactivity (empathy) or ethical leadership. Qualitative data themes were as follows: ethical care; care challenges; and ethical care inhibitors. Overall findings stimulate reflection on the value of three different ethics education interventions and the most appropriate means to evaluate their impact. Findings suggest the complexity and diverse nature of ethical competence in care. We suggest a way forward for research evaluating ethics education.