Managing clinical uncertainty: an ethnographic study of the impact of critical care outreach on end‐of‐life transitions in ward‐based critically ill patients with a life‐limiting illness

© 2018 Crown copyright. Journal of Clinical Nursing © 2018 John Wiley & Sons LtdRapid response teams, such as critical care outreach teams, have prominent roles in managing end-of-life transitions in critical illness, often questioning appropriateness of treatment escalation. Clinical uncertainty presents clinicians with dilemmas in how and when to escalate or de-escalate treatment. Aims and objectives: To explore how critical care outreach team decision-making processes affect the management of transition points for critically ill, ward-based patients with a life-limiting illness. Methods: An ethnographic study across two hospitals observed transition points and decisions to de-escalate treatment, through the lens of critical care outreach. In-depth interviews were carried out to elucidate rationales for practices witnessed in observations. Detailed field notes were taken and placed in a descriptive account. Ethnographic data were analysed, categorised and organised into themes using thematic analysis. Findings: Data were collected over 74 weeks, encompassing 32 observation periods with 20 staff, totalling more than 150 hr. Ten formal staff interviews and 20 informal staff interviews were undertaken. Three main themes emerged: early decision-making and the role of critical care outreach; communicating end-of-life transitions; end-of-life care and the input of critical care outreach. Findings suggest there is a negotiation to achieve smooth transitions for individual patients, between critical care outreach, and parent or ward medical teams. This process of negotiation is subject to many factors that either hinder or facilitate timely transitions. Conclusions: Critical care outreach teams have an important role in shared decision-making. Associated emotional costs relate to conflict with parent medical teams, and working as lone practitioners. The cultural contexts in which teams work have a significant effect on their interactions and agency. Relevance to practice: There needs to be a cultural shift towards early and open discussion of treatment goals and limitations of medical treatment, particularly when facing serious illness. With training and competencies, outreach nurses are well placed to facilitate these discussions.Peer reviewe

How does the process of group singing impact on people affected by cancer? A grounded theory study

OBJECTIVE: This study aimed to build an understanding of how the process of singing impacts on those who are affected by cancer, including patients, staff, carers and those who have been bereaved. DESIGN: A qualitative study, informed by a grounded theory approach. SETTING AND PARTICIPANTS: Patients with cancer, staff, carers and bereaved who had participated for a minimum of 6 weeks in one of two choirs for people affected by cancer. METHODS: 31 participants took part in Focus Group Interviews lasting between 45 min and an hour, and 1 participant had a face-to-face interview. FINDINGS: Four overarching themes emerged from the iterative analysis procedure. The overarching themes were: building resilience, social support, psychological dimensions and process issues. Following further analyses, a theoretical model was created to depict how building resilience underpins the findings. CONCLUSION: Group singing may be a suitable intervention for building resilience in those affected by cancer via an interaction between the experience and impact of the choir

Cancer and the family: assessment, communication and brief interventions—the development of an educational programme for healthcare professionals when a parent has cancer

Objective This study developed and piloted an educational intervention to support healthcare professionals (HCPs) to provide supportive care for families when a parent has cancer.Methods Programme development followed the Medical Research Council (MRC) framework, beginning with examination of theory and research, and consultation with experts. The programme content incorporated attachment theory, child development and family systems theory. It was piloted thrice with HCPs from a cancer centre. The evaluation involved a questionnaire, comprising open-ended questions, completed before and after the programme. Data from the questionnaire were analysed using framework analysis.Results 31 HCPs from varying disciplines participated. The programme was evaluated positively by participants. Before the programme, participants had significant concerns about their professional competence, which included: managing their own emotions; a perceived sensitivity around raising child and family matters with patients and a lack of specialist experience, skills and knowledge. After completing the programme, participants reported greater understanding and knowledge, increased confidence to approach patients about family matters, greater skill to initiate conversations and explore family concerns and guiding parent–child communication according to the child's level of understanding, and an increased engagement and resilience for caring for parents with cancer.Significance of the results Supporting HCPs to provide family-centred care is likely to reduce psychological difficulties in families where a parent has cancer. Further work is planned to disseminate the programme, evaluate the transfer of skills into practice, assess how HCPs manage the emotional demands of providing supportive care over time, and consider on-going professional support for HCPs.<br/

Concepts of mental capacity for patients requesting assisted suicide: a qualitative analysis of expert evidence presented to the Commission on Assisted Dying

BACKGROUND: In May 2013 a new Assisted Dying Bill was tabled in the House of Lords and is currently scheduled for a second reading in May 2014. The Bill was informed by the report of the Commission on Assisted Dying which itself was informed by evidence presented by invited experts. This study aims to explore how the experts presenting evidence to the Commission on Assisted Dying conceptualised mental capacity for patients requesting assisted suicide and examine these concepts particularly in relation to the principles of the Mental Capacity Act 2005. METHODS: This study was a secondary qualitative analysis of 36 transcripts of oral evidence and 12 pieces of written evidence submitted by invited experts to the Commission on Assisted Dying using a framework approach. RESULTS: There was agreement on the importance of mental capacity as a central safeguard in proposed assisted dying legislation. Concepts of mental capacity, however, were inconsistent. There was a tendency towards a conceptual and clinical shift toward a presumption of incapacity. This appeared to be based on the belief that assisted suicide should only be open to those with a high degree of mental capacity to make the decision. The ‘boundaries’ around the definition of mental capacity appeared to be on a continuum between a circumscribed legal ‘cognitive’ definition of capacity (in which most applicants would be found to have capacity unless significantly cognitively impaired) and a more inclusive definition which would take into account wider concepts such as autonomy, rationality, voluntariness and decision specific factors such as motivation for decision making. CONCLUSION: Ideas presented to the Commission on Assisted Dying about mental capacity as it relates to assisted suicide were inconsistent and in a number of cases at variance with the principles of the Mental Capacity Act 2005. Further work needs to be done to establish a consensus as to what constitutes capacity for this decision and whether current legal frameworks are able to support clinicians in determining capacity for this group

Group singing in bereavement:Effects on mental health, self-efficacy, self-esteem and well-being

OBJECTIVES: Bereavement is associated with negative affective, cognitive, behavioural and physiological responses. However, factors, such as coping, self-efficacy and self-esteem, can buffer negative effects of grief, and can be increased through mutual support interventions, such as shared leisure activities. This study used a non-randomised controlled design to explore the effects of group choir singing on mental health among people who have been bereaved due to cancer. METHODS: A total of 58 adults bereaved in the last 5 years who had not started psychological therapy in the last 12 weeks or medication for anxiety or depression in the last month were recruited and elected to join a choir (n=29) or participate in the non-intervention control group (n=29). Joining a choir involved engaging in 90 min weekly singing and social sessions for 12 weeks with a post-intervention assessment at week 24. We used linear mixed effects models adjusted for demographics, health-related variables, musical engagement and time since bereavement to model changes over time between the two groups in symptoms of anxiety, depression, well-being, self-efficacy and self-esteem. RESULTS: Participants who sang in a choir had more stable symptoms of depression and levels of well-being, as well as gradual improvements in their sense of self-efficacy and self-esteem over the 24 weeks. In contrast, those in the control group showed gradual increases in depressive symptoms, reductions in levels of well-being and self-esteem and no improvement in their self-efficacy. These results were independent of all covariates. CONCLUSIONS: Weekly group singing could be a promising mutual support intervention for people experiencing grief. TRIAL REGISTRATION NUMBER: NCT02756780

Psychosocial singing interventions for the mental health and well-being of family carers of patients with cancer:Results from a longitudinal controlled study

OBJECTIVE: The mental health challenges facing people who care for somebody with cancer are well documented. While many support interventions focus on provision of information or cognitive behavioural therapy, the literature suggests that psychosocial interventions could also be of value, especially given the low social support frequently reported by carers. Singing is a psychosocial activity shown to improve social support, increase positive emotions, and reduce fatigue and stress. This study explored whether weekly group singing can reduce anxiety, depression and well-being in cancer carers over a 6-month period. DESIGN: A multisite non-randomised longitudinal controlled study. SETTING: The Royal Marsden National Health Service Trust in Greater London. PARTICIPANTS: 62 adults who currently care for a spouse, relative or close friend with cancer who had not recently started any psychological therapy or medication. INTERVENTIONS: On enrolment, participants selected to join a weekly community choir for 12 weeks (n=33) or continue with life as usual (n=29). OUTCOME MEASURES: The primary outcome was mental health using the Hospital Anxiety and Depression Scale. The secondary outcome was well-being using the Warwick Edinburgh Mental Wellbeing Scale. Using linear mixed effects models, we compared the change in mental health and well-being over time between the two groups while adjusting for confounding variables including demographics, health-related variables, musical engagement and length of time caring. RESULTS: Participants in the choir group showed a significantly greater decrease in anxiety over time than participants in the control group (B=-0.94, SE=0.38, p=0.013) and a significantly greater increase in well-being (B=1.25, SE=0.49, p=0.011). No changes were found for depression. Sub-group analyses showed carers with anxiety or below-average well-being were most likely to benefit. CONCLUSIONS: This study builds on previous research showing the mental health benefits of singing for people with cancer by showing that weekly singing can also support anxiety and well-being in cancer carers

‘Out There’: Developing a transition pathway for adolescents and young adults with cancer using Experience-Based Co-Design

Experience-based co-design (EBCD) provides the opportunity to embed patient experience and input into service design. EBCD was used in the adolescent and young adult oncology setting to develop a transition pathway from hospital for young adults completing cancer treatment

Advanced breast cancer education for cancer nurses: A systematic review

Background: Access to comprehensive, integrated, multidisciplinary care is one of the most urgent and actionable recommendations of the Advanced Breast Cancer Global Alliance. However, access to specialist breast care units, and specialist breast cancer nurses is variable, influenced by access to specialist education and role recognition. To date, there has not been a synthesis of evidence regarding educational programmes related to advanced breast cancer education for nurses. Objectives: The aim of this review was to determine the content, mode of delivery, assessment and outcomes of education programmes related to advanced breast cancer for nurses. Review methods: A systematic review was undertaken, according to the Joanna Briggs Institute's mixed methods review methodology. Data sources: MEDLINE, PUBMED, CINAHL, Scopus, PsycInfo, Joanna Briggs Institute, Web of Science and grey literature sources were systematically searched. Eleven publications met the inclusion criteria. Data relating to programme content, mode of delivery, assessment and outcomes were extracted and analysed. Results: This review identifies a limited number of educational programmes within this specialist area of nursing practice. Shortcomings in the development, implementation and evaluation of advanced breast cancer education programmes included limited use of educational standards, theoretical frameworks and patient and public involvement to inform programme development. Evaluation of education programmes related to advanced breast cancer relied predominantly on self-reported learning, with limited consideration of the impacts of education on service delivery, patient experience or quality of care. Conclusions: Future development of advanced breast cancer education programmes must consider the alignment of programme content and learning outcomes with existing educational and competency standards. Evaluation of educational programmes in this field must endeavour to enhance rigour of methods, incorporating standardised questionnaires, and multiple methods and sources of data to evaluate the broader impacts of advanced breast cancer education for nurses