An exploration of managing emotional labour and maintaining professional integrity in children's hospice nursing.

BACKGROUND: Research exploring nurse-parent relationships in children's hospices is rare. AIM: To investigate how children's hospice nurses manage emotional labour and professional integrity in their long-term relationships with parents. METHODS: A purposive sample of six children's nurses, from hospices across England, recorded audio diaries and participated in telephone interviews. Narratives were thematically analysed. FINDINGS: Three overarching, cross-cutting themes were identified-purposeful positioning; balancing personability and professionalism; coping with and counterbalancing emotional labour. All themes were indicative of and/or built upon emotional intelligence constructs, such as self-awareness, self-regulation, appropriate (managed) empathy, social skills and intrinsic motivation. Innate features of children's hospice work were important for perpetuating intrinsic motivation and satisfaction. CONCLUSION: This study provided an insight into the management of emotional labour and professional integrity by experienced children's hospice nurses. The identification of emotional intelligence skills merits further exploration in this environment, as well as other children's palliative care settings.

Using mobile phones, WhatsApp and phone interviews to explore how children's hospice nurses manage long-term relationships with parents: a feasibility pilot.

BACKGROUND: Mobile phones are familiar to most nurses, but the applications available for voice recording and transfer of audio files in research may not be. AIM: To provide an overview of a pilot study which trialled the use of mobile phones, WhatsApp and phone interviews as a safe and reliable means of collecting data. DISCUSSION: A pilot study was designed to test the use of: mobile phones as a safe and reliable way to record audio diaries as research data; WhatsApp to transmit the audio files; and phone interviews to explore them. Undertaking the pilot demonstrated that the tools proposed for collecting data were useable and acceptable to the target population and that the researcher's guidance for doing so was satisfactory. CONCLUSION: New technologies enable innovation but trialling them for useability is important. Confidentiality and consent need to be carefully managed when using WhatsApp to ensure a study is compliant with data protection regulations. IMPLICATIONS FOR PRACTICE: Collection of research data digitally and remotely has become increasingly mainstream and relied on during the COVID 19 pandemic. The methods discussed in this article provide solutions for timely data collection that are particularly useful when the researcher is geographically distant from participants. The 'in the moment' reflective nature of the audio diaries could also be applicable to non-research settings - for example, as a method of assisting ongoing professional development and/or collection of reflective accounts.

Covid-19 Coping Survey: an In-depth Qualitative Analysis of Free-Text Responses from People With and Without Existing Health Conditions in the UK.

BACKGROUND: There is currently a lack of qualitative research exploring how cognitive and emotional reactions to the threat of SARS-CoV-2 affected the health behaviours of people living with and without pre-existing mental and physical health conditions. We aimed to investigate how the threat of SARS-CoV-2 influenced the thoughts, feelings and health behaviours of people with and without pre-existing health conditions in the UK. METHODS: A cross-sectional online survey of UK adults (aged 18 and over). Free-text responses were analysed using a qualitative framework approach guided by the Common-Sense Model of Self-Regulation. RESULTS: Of the 9110 respondents, 2763 participants provided at least one free-text response. Three main themes were derived from the data. Theme one, locus of control, reports on the extent to which people felt in control during the first wave of the pandemic. Theme two, emotional impact, conveys how individuals felt and how people's personal circumstances made them more vulnerable to experiencing negative emotions during the pandemic. Theme three, coping strategies, describes common health-protective and health-threatening behaviours performed by individuals, as well as the importance of social connectedness, the social context and the need for collective action during the first national lockdown. CONCLUSION: Complex psychological interventions including behaviour change are required to mitigate the psychological burden of the SARS-CoV-2 pandemic and increase autonomy in people with and without pre-existing conditions during this highly uncertain time. Behavioural scientists can support governments and public health agencies to develop evidence-based communication and behaviour change strategies that support people to address unhelpful beliefs and emotions and strengthen coping abilities as the UK moves through and beyond the SARS-CoV-2 pandemic.

End-of-life care for people with severe mental illness: mixed methods systematic review and thematic synthesis of published case studies (the MENLOC study).

OBJECTIVES: People with severe mental illness (SMI) have significant comorbidities and reduced life expectancy. The objective of the review reported in this paper was to synthesise material from case studies relating to the organisation, provision and receipt of care for people with SMI who have an end-of-life (EoL) diagnosis. DESIGN: Systematic review and thematic synthesis. DATA SOURCES: MEDLINE, PsycINFO, EMBASE, HMIC, AMED, CINAHL, CENTRAL, ASSIA, DARE and Web of Science from inception to December 2019. Supplementary searching for additional material including grey literature along with 62 organisational websites. RESULTS: Of the 11 904 citations retrieved, 42 papers reporting 51 case studies were identified and are reported here. Twenty-five of the forty-two case study papers met seven, or more quality criteria, with eight meeting half or less. Attributes of case study subjects included that just over half were men, had a mean age of 55 years, psychotic illnesses dominated and the EoL condition was in most cases a cancer. Analysis generated themes as follows diagnostic delay and overshadowing, decision capacity and dilemmas, medical futility, individuals and their networks, care provision. CONCLUSIONS: In the absence of high-quality intervention studies, this evidence synthesis indicates that cross disciplinary care is supported within the context of established therapeutic relationships. Attention to potential delay and diagnostic overshadowing is required in care provision. The values and preferences of individuals with severe mental illness experiencing an end-of-life condition should be recognised. PROSPERO REGISTRATION NUMBER: CRD42018108988.

The dying patient: taboo, controversy and missing terms of reference for designers-an architectural perspective.

Contemporary society has grown seemingly detached from the realities of growing old and subsequently, dying. A consequence, perhaps, of death becoming increasingly overmedicalised, nearly one in two UK nationals die institutional deaths. In this article we, two architectural scholars engaged in teaching, research and practice and a nurse and healthcare scholar with a focus on end-of-life care and peoples' experiences, wish to draw attention to a controversy resulting from a paucity in current literature on the terms of reference of the dying 'patient' as we navigate the future implications of the COVID-19 pandemic. This contributes to a relative lack of touchstones for architects to refer to when designing person-centred palliative care environments. Unlike common building types, architects are extremely unlikely to have lived experience of palliative care environments as patients; and therefore, require the help of healthcare professionals to imagine and empathise with the requirements of a person dying away from home. This paper includes a review of ageing and dying literature to understand, and distil from an architectural perspective, who, design professionals, are designing for and to remember the nuanced characteristics of those we hold a duty of care toward. We ask readers to heed the importance of accurate terms of reference, especially when commissioning and/or designing environments of palliative care. Furthermore, we put forward an appeal for interdisciplinary collaboration to develop a framework for codesigning positive experiences of person-centred care and environments at the end of life.

End of life care for people with severe mental illness: Mixed methods systematic review and thematic synthesis (the MENLOC study).

BACKGROUND: Parity of esteem means that end-of-life care for people with severe mental illness should be of equal quality to that experienced by all. AIM: To synthesise international, English language, research and UK policy and guidance relating to the organisation, provision, and receipt of end-of-life care for people with severe mental illness. DESIGN: A mixed methods systematic review was conducted following the Evidence for Policy and Practice Information and Co-ordinating Centre approach and informed by a stakeholder group. We employed thematic synthesis to bring together data from both qualitative and quantitative studies, and from non-research material. We assessed the strength of synthesised findings using the Confidence in the Evidence from Reviews of Qualitative Research (CERQual) and Grading of Recommendations, Assessment, Development and Evaluation (GRADE) approaches. DATA SOURCES: Ten electronic databases were searched from inception to December 2019, along with 62 organisational websites. Quality appraisal was conducted using Critical Appraisal Skills Programme checklists or other study design-specific alternatives as necessary. RESULTS: Of the 11,904 citations retrieved, 34 research publications were included plus 28 non-research items. The majority of research was of high or acceptable quality. An overarching synthesis including 52 summary statements, with assessments of confidence in the underpinning evidence, was produced using four themes: Structure of the system; Professional issues; Contexts of care; and Living with severe mental illness. CONCLUSIONS: Implications for services and practice reflect evidence in which there is a high degree of confidence. Partnership should be developed across the mental health and end-of-life systems, and ways found to support people to die where they choose. Staff caring for people with severe mental illness at the end-of-life need education, support and supervision. End-of-life care for people with severe mental illness requires a team approach, including advocacy. Proactive physical health care for people with severe mental illness is needed to tackle problems of delayed diagnosis.

Experiences of cancer immunotherapy with immune checkpoint inhibitors (ExCIm)-insights of people affected by cancer and healthcare professionals: a qualitative study protocol.

INTRODUCTION: There is a global interest in cancer immunotherapy. Clinical trials have found that one group, immune checkpoint inhibitors (ICIs), has demonstrated clinical benefits across various cancers. However, research focused on the experiences of people affected by cancer who have undergone this treatment using qualitative methodology is currently limited. Moreover, little is known about the experiences and education needs of the healthcare staff supporting the people receiving these immunotherapies. This study therefore seeks to explore the experiences of using ICIs by both the people affected by cancer and the healthcare professionals who support those people, and use the findings to make recommendations for ICI supportive care guidance development, cancer immunotherapy education materials for healthcare professionals, cancer policy and further research. METHODS AND ANALYSIS: Patient participants (n=up to 30) will be recruited within the UK. The sample will incorporate a range of perspectives, sociodemographic factors, diagnoses and ICI treatments, yet share some common experiences. Healthcare professionals (n=up to 15) involved in supporting people receiving immunotherapy will also be recruited from across the UK. Data will be generated through in-depth, semistructured interviews. Reflexive thematic analysis will be used to obtain thorough understanding of individual's perspectives on, and experiences of, immunotherapy. Study dates are as follows: December 2019-March 2022. ETHICS AND DISSEMINATION: The research will be performed in accordance with the UK Policy for Health and Social Care Research and Cardiff University's Research Integrity and Governance Code of Practice (2018). The study received ethical approval from the West Midlands and Black Country Research Ethics Committee in October 2019. Health Research Authority and Health and Care Research Wales approvals were confirmed in December 2019. All participants will provide informed consent. Findings will be published in peer-reviewed journals, non-academic platforms, the Macmillan Cancer Support website, disseminated at relevant national and international conferences and presented via a webinar. The study is listed on the National Institute for Health Research (NIHR) Clinical Research Network Central Portfolio.

Nurses' decision-making about cancer patients' end-of-life skin care in Wales: an exploratory mixed-method vignette study protocol.

INTRODUCTION: Patients with cancer are at high risk of developing pressure ulcers at the end of life as a result of their underlying condition or cancer treatment. There are many guidelines which set out best practice with regard to end-of-life skin care. However, the complexity of palliative cancer care often means that it is challenging for nurses to make the appropriate person-centred decisions about end-of-life skin care. This study seeks to explore the perceived importance that nurses place on different factors in their end-of-life skin care for patients with cancer. The utility, face validity and content validity of a prototype decision-making tool for end-of-life skin care will also be evaluated. METHODS AND ANALYSIS: A mixed-method design will be used to gather data from primary and secondary care nurses working in different hospitals and local authority areas across Wales. Clinical vignettes will be used to gather qualitative and quantitative data from nurses in individual interviews. Qualitative data will be subject to thematic analysis and quantitative data will be subject to descriptive statistical analysis. Qualitative and quantitative data will then be synthesised, which will enhance the rigour of this study, and pertinently inform the further development of an end-of-life skin care decision-making tool for patients with cancer. ETHICS AND DISSEMINATION: Ethical approval to undertake the study has been granted by Cardiff University School of Healthcare Sciences Research Governance and Ethics Screening Committee. Informed consent will be obtained in writing from all the participants in this study. The results of this study will be disseminated through journal articles, as well as presentations at national and international conferences. We will also report our findings to patient and public involvement groups with an interest in improving cancer care, palliative care as well as skin care.

Barriers to, and facilitators of, access to cancer services and experiences of cancer care for adults with a physical disability: A mixed methods systematic review.

BACKGROUND: Cancer services need to be inclusive and accessible to everybody, including people with disabilities. However, there is evidence suggesting that people with disabilities experience poorer access to cancer services, compared to people without disabilities. OBJECTIVES: To investigate the barriers and facilitators of access to cancer services for people with physical disabilities and their experiences of cancer care. METHODS: A mixed-method systematic review was conducted following the Evidence for Policy and Practice Information and Co-ordinating Centre approach. We used the Mixed Methods Appraisal Tool (MMAT -Version 11) to assess the quality of the included studies. We employed thematic synthesis to bring together data from across both qualitative and quantitative studies and we assessed the strength of synthesised findings using the Confidence in the Evidence from Reviews of Qualitative Research (CERQual) approach. RESULTS: Seven quantitative studies and 10 qualitative studies (across 18 publications) were included. The findings highlighted a dearth of research on the experiences of men with disabilities. Furthermore, only one study explored experiences of cancer treatment, with all other studies focusing on cancer screening. Five synthesised findings were identified that reflected barriers and facilitators, highlighting both what makes access to services difficult and what are the strategies that could improve it. CONCLUSIONS: Knowing what works for people with disabilities can enable the delivery of appropriate services. The findings of this review suggest that the mere existence of services does not guarantee their usability. Services need to be relevant, flexible, and accessible, and offered in a respectful manner.

Long-term nurse-parent relationships in paediatric palliative care: a narrative literature review.

BACKGROUND: Paediatric palliative care (PPC) is an active, total approach to the holistic care of the child and family. Close, long-lasting relationships between healthcare professionals and parents in paediatric palliative care enhance quality, provide emotional support and can influence how parents manage their role in the face of uncertainty. AIM: To present a narrative literature review of long-term relationships between children's nurses and parents in PPC settings. METHODS: Six databases (CINAHL, PsycINFO, ASSIA, Scopus, Medline and BNI) were searched, identifying 35 articles. A grey literature search produced seven additional relevant items. FINDINGS: Four themes were identified: bonds; attachments and trust; sharing the journey; going the extra mile; and boundaries and integrity. All themes revealed an element of tension between closeness and professionalism. CONCLUSION: Gaining a greater understanding of how closeness and professionalism are successfully managed by children's palliative care nurses could positively influence pre- and post-registration nurse education.

Barriers to accessing cancer services for adults with physical disabilities in England and Wales: an interview-based study.

OBJECTIVES: The aim of this study was to explore the barriers to accessing cancer services faced by adults with pre-existing physical disabilities. DESIGN: Cross-sectional, exploratory qualitative study. Data were collected by semistructured interviews and analysed thematically. SETTING: Participants were recruited through statutory and third sector organisations in England and Wales between October 2017 and October 2018. PARTICIPANTS: 18 people with a diagnosis of cancer and a pre-existing physical disability. RESULTS: The findings illustrate that people with physical disabilities in England and Wales face a variety of barriers to accessing cancer services. The overall theme that emerged was that participants experienced a lack of attitudinal and institutional preparation both from healthcare professionals and healthcare facilities. This overall theme is illustrated through three subthemes: lack of acknowledgment of disability, unseeing disability and physical inaccessibility. CONCLUSIONS: As the population ages and increasing numbers of people live with cancer and disability, it is important to develop knowledge to respond to the needs of this population. The mere existence of services does not guarantee their usability. Services need to be relevant, flexible, and accessible and offered in a respectful manner. It is important that healthcare professionals work towards inclusive healthcare provision, enabling the utilisation of services by all. Necessary steps to be taken include better communication between the various professionals and across the different teams involved in patients' care, raising awareness of how physical disability can affect or interact with cancer-related treatment and creating more accessible physical environments.

Compassionate leadership in district nursing: a case study of a complex wound.

This article encourages nurses to explore leadership in district nursing practice and community teams. The challenges faced by district nurses are discussed in relation to the current health policy agenda in Wales and the increasingly complex care demands being placed on district nursing services because of the aging population and the rise in numbers of individuals living longer with multiple long-term health conditions. The concept of compassionate leadership is presented and discussed using a case study approach. The article explores compassionate leadership in the context of caring for a patient with a complex malignant wound needing palliative care. A framework for practice is developed to illustrate compassionate leadership in action to meet the needs of both the team and of the nurses delivering person-centred care.

Hidden voices: an interpretative phenomenological analysis of the experience of surviving breast cancer in Saudi Arabia.

BACKGROUND: Women with breast cancer often have difficulties in making sense of and understanding their experiences, specifically the ways in which cultural sensitivities impact on and shape their lifeworlds. AIMS: The aim of this study is to explore the experience of being a breast cancer survivor in Saudi Arabia. METHODS: Qualitative, in-depth, semi-structured interviews were conducted with 18 Saudi breast cancer survivors aged between 30 and 50 years who had finished treatment 6-47 months before data collection. The data were transcribed verbatim, translated from Arabic into English and analysed using interpretative phenomenological analysis. RESULTS: Three themes emerged: the meaning of cancer; hidden survival; and the cultural meaning of survival. For women in Saudi, breast cancer has a cultural stigma linked to death. It changes the sense of self and of society, leading some women to hide their diagnosis from the public and their families. The meaning of survival in a Muslim context has a cultural and religious base, linked to God's will, normality and resumption of activities. CONCLUSIONS: The study helps give Saudi women a 'voice' through the understanding of their experiences of surviving breast cancer. The unique cultural perspectives provide new insights, which can guide healthcare practice and inform the development of programmes to support women who survive breast cancer.

Supporting carers to manage pain medication in cancer patients at the end of life: A feasibility trial.

BACKGROUND: Carers of people with advanced cancer play a significant role in managing pain medication, yet they report insufficient information and support to do so confidently and competently. There is limited research evidence on the best ways for clinicians to help carers with medication management. AIMS: To develop a pain medicines management intervention (Cancer Carers Medicines Management) for cancer patients' carers near the end of life and evaluate feasibility and acceptability to nurses and carers. To test the feasibility of trial research procedures and to inform decisions concerning a full-scale randomised controlled trial. DESIGN: Phase I-II clinical trial. A systematic, evidence-informed participatory method was used to develop CCMM: a nurse-delivered structured conversational process. A two-arm, cluster randomised controlled feasibility trial of Cancer Carers Medicines Management was conducted, with an embedded qualitative study to evaluate participants' experiences of Cancer Carers Medicines Management and trial procedures. SETTING: Community settings in two study sites. PARTICIPANTS: Phase I comprises 57 carers, patients and healthcare professionals and Phase II comprises 12 nurses and 15 carers. RESULTS: A novel intervention was developed. Nurses were recruited and randomised. Carer recruitment to the trial was problematic with fewer than predicted eligible participants, and nurses judged a high proportion unsuitable to recruit into the study. Attrition rates following recruitment were typical for the study population. Cancer Carers Medicines Management was acceptable to carers and nurses who took part, and some benefits were identified. CONCLUSION: Cancer Carers Medicines Management is a robustly developed medicines management intervention which merits further research to test its effectiveness to improve carers' management of pain medicines with patients at the end of life. The study highlighted aspects of trial design that need to be considered in future research.

The silencing effects of the childhood innocence ideal: the perceptions and practices of fathers in educating their children about sexuality.

This study employed Interpretative Phenomenological Analysis to explore eight fathers' perceptions and practices in talking to their ten year old children about puberty, relationships and reproduction. The fathers participated in face to face interviews which were analysed idiographically initially, followed by analysis at the group level. Interpretations were then developed through critical application of a Foucauldian lens of governmentality and biopower. The results revealed a tension between the fathers' cognitions, accounts and behaviours. Their practices were largely characterised by silence yet they reported positive attitudes towards children's sexuality education and perceived themselves as equipped and willing to take on the role of sexuality educator. They also reported enjoying open relationships with their children. Interpretations centred on contradictions and conflict between the majority of the fathers' aspirations and the compelling nature of the childhood innocence discourse as a technology of governmentality. Whilst all of the fathers felt that it was in their children's interests to learn about sexuality, all but one adhered to hegemonic protective discourses and unquestioningly integrated their normalising effects into their fathering practices which, it is argued, may paradoxically render their children more vulnerable both now and in the future.

What is important for student nurses to know about cancer treatment and care: a qualitative study of student nurses' and stakeholder perspectives.

AIMS AND OBJECTIVES: To explore the views of student nurses' and stakeholders of what is important for student nurses to know about cancer treatment and care. BACKGROUND: Worldwide, the number of people living with cancer is increasing because the population is ageing and effective cancer treatments are prolonging survival. All nurses need knowledge, skills, confidence and competence to support people living with cancer. Education is an important tool in preparing a nursing workforce that can support people affected by cancer. DESIGN: A descriptive, explorative qualitative design. METHODS: Semi-structured interviews with 12 student nurses and seven stakeholders were conducted in 2014 (a subgroup of participants in a mixed-methods study investigating an innovation in undergraduate cancer education and reported elsewhere). The interviews were audio-taped, transcribed and analysed using content analysis. RESULTS: Two key findings emerged: the benefits of learning from people affected by cancer and knowledge deficits. Students valued the opportunity to meet people affected by cancer away from a clinical environment. It gave them the opportunity to gain skills and confidence, in providing information and psycho-educational support, in a safe and facilitated context. Students and stakeholders reported blended learning (lectures and engaging with both cancer clinicians and people affected by cancer) important for developing confidence and competence in cancer care. However, at the end of their education students identified knowledge deficits in relation to cancer screening, common cancers, treatment side effects and supporting people who have been given 'bad news'. CONCLUSIONS: Collaborative working with people affected by cancer and educationalists has allowed the patient and carer experience to be placed at the centre of the undergraduate cancer education. RELEVANCE TO CLINICAL PRACTICE: This research reveals the potential importance of the coproduction of undergraduate nurse cancer education, if nurses are to understand and improve the experience of people living with cancer and beyond.

Education and training to enhance end-of-life care for nursing home staff: a systematic literature review.

BACKGROUND: The delivery of end-of-life care in nursing homes is challenging. This situation is of concern as 20% of the population die in this setting. Commonly reported reasons include limited access to medical care, inadequate clinical leadership and poor communication between nursing home and medical staff. Education for nursing home staff is suggested as the most important way of overcoming these obstacles. OBJECTIVES: To identify educational interventions to enhance end-of-life care for nursing home staff and to identify types of study designs and outcomes to indicate success and benchmark interventions against recent international guidelines for education for palliative and end-of-life care. DESIGN: Thirteen databases and reference lists of key journals were searched from the inception of each up to September 2014. Included studies were appraised for quality and data were synthesised thematically. RESULTS: Twenty-one studies were reviewed. Methodological quality was poor. Education was not of a standard that could be expected to alter clinical behaviour and was evaluated mainly from the perspectives of staff: self-reported increase in knowledge, skills and confidence delivering care rather than direct evidence of impact on clinical practice and patient outcomes. Follow-up was often short term, and despite sound economic arguments for delivering effective end-of-life care to reduce burden on the health service, no economic analyses were reported. CONCLUSIONS: There is a clear and urgent need to design educational interventions that have the potential to improve end-of-life care in nursing homes. Robust evaluation of these interventions should include impact on residents, families and staff and include economic analysis.

An innovation in curriculum content and delivery of cancer education within undergraduate nurse training in the UK. What impact does this have on the knowledge, attitudes and confidence in delivering cancer care?

PURPOSE: This was an evaluation of an innovation in curriculum content and delivery within undergraduate nursing education in the UK. Its purpose was to investigate the effect on knowledge, attitudes and confidence in delivering cancer care. METHODS: The study design was a pre-test post-test survey design with a comparison group. Participants were two cohorts of undergraduate nursing students (n(intervention) = 84, n(comparison) = 91). The intervention cohort were exposed to a new 3.5 day programme of cancer education, coproduced with patients, carers and health professionals, which focused on cancer as a life changing long-term condition. The comparison cohort had been exposed to a 2 day programme produced by a lecturer. RESULTS: Following exposure to the new model for the delivery of undergraduate nurse cancer education, the intervention cohort demonstrated good overall knowledge of the impact of cancer, more positive attitudes towards cancer treatment and more confidence in their ability to deliver cancer care. Attitudes were more positive and confidence in ability to support cancer patients at all stages of the cancer journey were greater than in the comparison group. Insights gained into the cancer patient and carer perspectives were highly valued. CONCLUSIONS: This study has found that a new model for the delivery of cancer education focusing on survivorship and delivered in partnership with patients, carers and clinicians, may improve knowledge, attitudes and confidence in the delivery of cancer care. Further work is now needed, using a more robust experimental design, to investigate the generalisability of the results to other education programs.