Building public engagement and access to palliative care and advance care planning: a qualitative study.

BACKGROUND: Research evidence suggests that a lack of engagement with palliative care and advance care planning could be attributed to a lack of knowledge, presence of misconceptions and stigma within the general public. However, the importance of how death, dying and bereavement are viewed and experienced has been highlighted as an important aspect in enabling public health approaches to palliative care. Therefore, research which explores the public views on strategies to facilitate engagement with palliative care and advance care planning is required. METHODS: Exploratory, qualitative design, utilising purposive random sampling from a database of participants involved in a larger mixed methods study. Online semi-structured interviews were conducted (n = 28) and analysed using reflexive thematic analysis. Thematic findings were mapped to the social-ecological model framework to provide a holistic understanding of public behaviours in relation to palliative care and advance care planning engagement. RESULTS: Three themes were generated from the data: "Visibility and relatability"; "Embedding opportunities for engagement into everyday life"; "Societal and cultural barriers to open discussion". Evidence of interaction across all five social ecological model levels was identified across the themes, suggesting a multi-level public health approach incorporating individual, social, structural and cultural aspects is required for effective public engagement. CONCLUSIONS: Public views around potential strategies for effective engagement in palliative care and advance care planning services were found to be multifaceted. Participants suggested an increase in visibility within the public domain to be a significant area of consideration. Additionally, enhancing opportunities for the public to engage in palliative care and advance care planning within everyday life, such as education within schools, is suggested to improve death literacy and reduce stigma. For effective communication, socio-cultural aspects need to be explored when developing strategies for engagement with all members of society.

Leadership practices that enable healthful cultures in clinical practice: A realist evaluation.

AIM: To generate, test and refine programme theories that emerged from a rapid realist review investigating practising UK Nurses' and Midwives' experiences of effective leadership strategies during the COVID-19 pandemic. BACKGROUND: The realist review of literature generated six tentative theories of healthful leadership practices reflecting, working with people's beliefs and values; being facilitative; multiple means of communication and; practical support. The review yielded little insight into the actual impact of the leadership approaches advocated. METHODS: A realist study, informed by person-centredness using mixed-methods. Online survey (n = 328) and semi-structured interviews (n = 14) of nurses and midwives across the UK in different career positions/specialities. Quantitative data analysed using descriptive statistics and exploratory factor analysis. Framework analysis for qualitative data using context (C), mechanism (M), outcome (O) configurations of the tentative theories. RESULTS: Three refined theories were identified concerning: Visibility and availability; embodying values and; knowing self. Healthful leadership practices are only achievable within organisational cultures that privilege well-being. CONCLUSIONS: Leaders should intentionally adopt practices that promote well-being. 'Knowing self' as a leader, coaching and mentoring practice development is important for leadership development. IMPLICATIONS FOR CLINICAL PRACTICE: Nurses who feel valued, heard, cared for and safe are more likely to remain in clinical practice. Job satisfaction and being motivated to practice with confidence and competence will impact positively on patient outcomes. IMPACT: The study addresses the role of leadership in developing healthful workplace cultures. The main findings were six leadership practices that promote healthful cultures. The research will have an impact on strategic and clinical leaders, nurses and midwives. REPORTING METHOD: This study used EQUATOR checklist, RAMASES II as reporting standards for realist evaluations. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

The experience of shared decision-making for patients with end-stage kidney disease undergoing haemodialysis and their families-A scoping review.

AIM: To identify the experiences of shared decision-making (SDM) for adults with end-stage kidney disease undergoing haemodialysis (HD) and their family members. DESIGN: A scoping literature review. METHOD: A scoping literature review, using Joanna Briggs Institute guidelines. DATA SOURCES: Medline (OVID), EMBASE, CINAHL, Psych Info, ProQuest, Web of Science, Open grey and grey literature were searched covering years from January 2015 to July 2022. Empirical studies, unpublished thesis and studies in English were included. The scoping review was conducted using the Preferred Reporting Items for Systematic Meta analysis-scoping review extension (PRISMA-Scr). RESULTS: Thirteen studies were included in the final review. While SDM is welcomed by people undergoing HD, their experience is often limited to treatment decisions, with little opportunity to revisit decisions previously made. The role of the family/caregivers as active participants in SDM requires recognition. CONCLUSION: People with end-stage kidney disease undergoing HD do and want to participate in the process of SDM, on a wide range of topics, in addition to treatment. A strategy is needed to ensure that SDM interventions are successful in achieving patient-driven outcomes and enhancing their quality of life. IMPLICATIONS FOR CLINICAL PRACTICE: This review highlights the experiences of people undergoing HD and their family/caregivers. There is a wide variety of clinical decisions requiring consideration for people undergoing HD, including considering the importance who should be involved in the decision-making processes and when decisions should occur. Further study to ensure nurses understand the importance, and influence of including family members in conversations on both SDM processes and outcomes is needed. There is a need for research from both patient and healthcare professional (HCP) perspectives to ensure that people feel supported and have their needs met in the SDM process. PATIENT AND PUBLIC CONTRIBUTION: No patient or public contribution.

Parents' experiences of initiation of paediatric advance care planning discussions: a qualitative study.

Advance care planning enables parents to discuss their goal and wishes for the future treatment and care of their life-limited or life-threatened child. Whilst research has identified the barriers clinicians face to initiate such discussions, the views of the parents have received scant attention. This qualitative study, using reflexive thematic analysis, aimed to explore parents' experience of the initiation of their child's advance care planning discussions, to help provide an understanding to inform future practice. Single interviews were undertaken with 17 non-bereaved and bereaved parents. Parents reported they had engaged with future thinking but needed time before initiating this with clinicians. They identified the need for a trusted professional and time for private, thorough, non-judgemental discussion without feeling clinicians were 'giving up'. Parents reported that advance care planning discussions were not always aligned to the dynamics of family life. They felt that health professionals were responsible for initiating advance planning conversations according to the families' individual requirements. There was an apparent lack of standardised protocols to assist paediatric advance care planning discussion initiation.Conclusion: Initiating advance care planning is a complicated process that needs to be tailored to the specific parent and child situation. Health professionals need to appreciate that parents are key contributors to initiate engagement with advance care planning discussions but that they also require support and care, recognising this may facilitate the building of trust, identified as a key corner stone, of paediatric advance care planning initiation and engagement. What is Known: • In paediatric palliative care, parents are challenged with wanting to sustain hope whilst thinking and planning for their child's end of life. Paediatric advance care planning discussions are often delayed or avoided and triggered by physical deterioration. What is New: • Previous relationship with HCP not essential but parental trust of the HCP is fundamental to Paediatric advance care planning initiation engagement. To build mutual trust health professionals' approach needs to be professional, respectful and empathetic to the parent and child's situation. • Subtle paediatric advance care planning parent initiation preparation by HCP is often unnoticed by parents but may be the crux of empowering parents to initiate advance care planning conversations themselves as they need to feel a sense of regaining control before planning ahead.

The impact of covid-19 on out-of-hours adult hospice care: an online survey.

BACKGROUND: Globally COVID-19 has had a profound impact on the provision of healthcare, including palliative care. However, there is little evidence about the impact of COVID-19 on delivery of out-of-hours specialist palliative care services in the United Kingdom. The aim of the study is to investigate the impact of the COVID-19 pandemic on the delivery of out-of-hours community-based palliative care services. METHODS: A national online census survey of managers of adult hospices in the United Kingdom was undertaken. Survey were emailed to managers of adult hospices (n = 150) who provided out-of-hours community palliative care services. Fifteen questions related specifically to the impact of COVID-19. Quantitative data were analysed using descriptive statistics and qualitative data were analysed using descriptive content analysis. RESULTS: Eighty-one responses to the survey were returned (54% response rate); 59 were complete of which 47 contained COVID-19 data. Findings indicated that COVID-19 impacted on out-of-hours community-based palliative care. To meet increased patient need, hospices reconfigured services; redeployed staff; and introduced new policies and procedures to minimize virus transmission. Lack of integration between charitably and state funded palliative care providers was reported. The interconnected issues of the use and availability of Personal Protective Equipment (n = 21) and infection control screening (n = 12) resulted in changes in nursing practices due to fear of contagion for patients, carers and staff. CONCLUSIONS: Survey findings suggest that due to increased demand for community palliative care services, hospices had to rapidly adapt and reconfigure services. Even though this response to the pandemic led to some service improvements, in the main, out-of-hours service reconfiguration resulted in challenges for hospices, including workforce issues, and availability of resources such as Personal Protective Equipment. These challenges were exacerbated by lack of integration with wider healthcare services. More research is required to fully understand the implications of such changes on the quality of care provided.

An analysis of the construct validity and responsiveness of the ICECAP-SCM capability wellbeing measure in a palliative care hospice setting.

BACKGROUND: For outcome measures to be useful in health and care decision-making, they need to have certain psychometric properties. The ICECAP-Supportive Care Measure (ICECAP-SCM), a seven attribute measure (1. Choice, 2. Love and affection, 3. Physical suffering, 4. Emotional suffering, 5. Dignity, 6. Being supported, 7. Preparation) developed for use in economic evaluation of end-of-life interventions, has face validity and is feasible to use. This study aimed to assess the construct validity and responsiveness of the ICECAP-SCM in hospice inpatient and outpatient settings. METHODS: A secondary analysis of data collated from two studies, one focusing on palliative care day services and the other on constipation management, undertaken in the same national hospice organisation across three UK hospices, was conducted. Other quality of life and wellbeing outcome measures used were the EQ-5D-5L, McGill Quality of Life Questionnaire - Expanded (MQOL-E), Patient Health Questionnaire-2 (PHQ-2) and Palliative Outcomes Scale Symptom list (POS-S). The construct validity of the ICECAP-SCM was assessed, following hypotheses generation, by calculating correlations between: (i) its domains and the domains of other outcome measures, (ii) its summary score and the other measures' domains, (iii) its summary score and the summary scores of the other measures. The responsiveness of the ICECAP-SCM was assessed using anchor-based methods to understand change over time. Statistical analysis consisted of Spearman and Pearson correlations for construct validity and paired t-tests for the responsiveness analysis. RESULTS: Sixty-eight participants were included in the baseline analysis. Five strong correlations were found with ICECAP-SCM attributes and items on the other measures: four with the Emotional suffering attribute (Anxiety/depression on EQ-5D-5L, Psychological and Burden on MQOL-E and Feeling down, depressed or hopeless on PHQ-2), and one with Physical suffering (Weakness or lack of energy on POS-S). ICECAP-SCM attributes and scores were most strongly associated with the MQOL-E measure (0.73 correlation coefficient between summary scores). The responsiveness analysis (n = 36) showed the ICECAP-SCM score was responsive to change when anchored to changes on the MQOL-E over time (p < 0.05). CONCLUSIONS: This study provides initial evidence of construct validity and responsiveness of the ICECAP-SCM in hospice settings and suggests its potential for use in end-of-life care research.

Initiation of paediatric advance care planning: Cross-sectional survey of health professionals reported behaviour.

BACKGROUND: Globally, initiation of paediatric advance care planning discussions is advocated early in the illness trajectory; however, evidence suggests it occurs at crisis points or close to end of life. Few studies have been undertaken to ascertain the prevalence and determinants of behaviour related to initiation by the healthcare professional. METHOD: Underpinned by the Capability, Opportunity, Motivation-Behaviour (COM-B) model for behaviour change, a cross-sectional online survey was conducted in United Kingdom and Ireland using a purposive sample of health professionals. Descriptive and inferential statistics were applied and nonparametric statistical analysis used. Open-ended questions were mapped and correlations between COM-B and demographic profiles identified. RESULTS: Responses (n = 140): Paediatric advance care planning was viewed positively; however, initiation practices were found to be influenced by wide ranging diagnoses and disease trajectories. Whilst some tools and protocols exist, they were not used in a systematic manner, and initiation behaviour was often not guided by them. Initiation was unstandardized, individually led, guided by intuition and experience and based on a range of prerequisites. Such behaviour, combined with inconsistencies in professional development, resulted in varying practice when managing clinical deterioration. Professionals who felt adequately trained initiated more conversations (capability). Those working in palliative care specialties, hospice settings and doctors initiated more discussions (opportunity). There was no difference in Motivation between professions, clinical settings or specialisms, although 25% (n = 35) of responses indicated discomfort discussing death and 34% (n = 49) worried about families' emotional reaction. CONCLUSION: Although advocated, paediatric advance care planning is a complex process, commonly triggered by the physical deterioration and rarely underpinned by support tools. The COM-B framework was useful in identifying fundamental differences in initiation behaviour; however, further research is required to explore the complexity of initiation behaviour and the system within which the care is being delivered to identify influences on initiation.

Design and implementation of an online admissions interview for selection to nursing and midwifery programmes: a partnership approach.

BACKGROUND: The recent surge in applications to nursing in the United Kingdom together with the shift towards providing virtual interviews through the use of video platforms has provided an opportunity to review selection methodologies to meet a new set of challenges. However there remains the requirement to use selection methods which are evidence-based valid and reliable even under these new challenges. METHOD: This paper reports an evaluation study of applicants to nursing and midwifery and reports on how to plan and use online interviews for in excess of 3000 applicants to two schools of nursing in Northern Ireland. Data is reported from Participants, Assessors and Administrators who were asked to complete an online evaluation using Microsoft Forms. RESULTS: A total of 1559 participants completed the questionnaire. The majority were aged 17-20. The findings provide evidence to support the validity and reliability of the online interview process. Importantly the paper reports on the design and implementation of a fully remote online interview process that involved a collaboration with two schools of nursing without compromising the rigour of the admissions process. The paper provides practical, quantitative, and qualitative reasons for concluding that the online remote selection process generated reliable data to support its use in the selection of candidates to nursing and midwifery. CONCLUSION: There are significant challenges in moving to online interviews and the paper discusses the challenges and reflects on some of the broader issues associated with selection to nursing and midwifery. The aim of the paper is to provide a platform for discussion amongst other nursing schools who might be considering major changes to their admissions processes.

UK nurses' and midwives' experiences of healthful leadership practices during the COVID-19 pandemic: A rapid realist review.

AIM: We aim to explore healthful leadership practices in nursing and midwifery evident within the COVID-19 pandemic in the United Kingdom, the contextual facilitators, barriers and outcomes. BACKGROUND: Globally, the health and care sectors are under pressure and despite nurses and other professionals, demonstrating resilience and resourcefulness in the COVID-19 pandemic; this has negatively impacted on their health and wellbeing and on patient care. EVALUATION: Two searches were conducted in July 2021 and December 2021. Inclusion/exclusion criteria were identified to refine the search, including papers written since the beginning of the pandemic in 2020. A total of 38 papers were included principally from the United States and United Kingdom. Ten were research papers; the others were commentaries, opinion pieces and editorials. MS Teams literature repository was created. A unique critical appraisal tool was devised to capture contexts, mechanisms and outcomes whilst reflecting more standardized tools, that is, the Critical Appraisal Skills Programme and the Authority, Accuracy, Coverage, Objectivity and Date tool for reviewing grey literature to refine the search further. KEY ISSUES: Six tentative theories of healthful leadership emerged from the literature around leadership strategies, which are relational, being visible and present; being open and engaging; caring for self and others; embodying values; being prepared and preparing others; and using available information and support. Contextual factors that enable healthful leadership practices are in the main, created by leaders' values, attributes and style. The literature suggests that leaders who embody values of compassion, empathy, courage and authenticity create conditions for positive and healthful relations between leaders and others. Nurse and midwives' voices are however absent from the literature in this review. CONCLUSION: Current available literature would suggest healthful leadership practices are not prioritized by nurse leaders. Perspectives of nurses' and midwives' about the impact of such practices on their wellbeing is also missing. Tentative theories are offered as a means of identifying healthful leadership strategies, the context that enable these and potential outcomes for nurses and midwives. These will be explored in phase two of this study. IMPLICATIONS FOR NURSING MANAGEMENT: Nurse leaders must be adequately prepared to create working environments that support nurses' and midwives' wellbeing, so that they may be able to provide high-quality care. Ensuring a supportive organizational culture, which embodies the values of healthfulness, may help to mitigate the impact of the COVID-19 pandemic on nurses' and midwives' wellbeing in the immediate aftermath and going forward.

Factors associated with health professionals decision to initiate paediatric advance care planning: A systematic integrative review.

BACKGROUND: Advance care planning for children with palliative care needs is an emotionally, legally and complex aspect of care, advocated as beneficial to children, families and health professionals. Evidence suggests healthcare professionals often avoid or delay initiation. An overview of evidence on the factors that influence and impact on the health care professional's initiation of paediatric advance care planning process is lacking. AIM: To review and synthesise evidence on the factors associated with health care professional's decision to initiate paediatric advance care planning. DESIGN: Systematic integrative review using constant comparison method. DATA SOURCES: Electronic databases (CINAHL, PubMed, PsycINFO, Ovid MEDLINE, EMBASE, Web of Science and Cochrane) using MeSH terms and word searches in Oct 2019. No limit set on year of publication or country. Grey literature searches were also completed. RESULTS: The search yielded 4153 citations from which 90 full text articles were reviewed. Twenty-one met inclusion criteria consisting of quantitative (n = 8), qualitative (n = 6) and theoretical (n = 7) studies.Findings revealed overarching and interrelated themes 'The timing of initiation', 'What makes an initiator, 'Professionals' perceptions' and 'Prerequisites to initiation'. CONCLUSIONS: This review provides insights into the complexities and factors surrounding the initiation of advance care planning in paediatric practice. Uncertainty regarding prognosis, responsibility and unpredictable parental reactions result in inconsistent practice. Future research is required to inform intervention to assist health care professionals when initiating paediatric advance care planning conversations.

Arts engagement facilitated by artists with individuals with life-limiting illness: A systematic integrative review of the literature.

BACKGROUND: Living with life-limiting illness significantly impacts quality of life. A growing body of evidence suggests that arts engagement facilitated by artists promotes well-being. However, no synthesis of the literature exists to describe arts engagement delivered by artists with individuals receiving palliative care. AIM: To systematically review and synthesize evidence to identify outcomes and key knowledge gaps to inform future research and practice. DESIGN: A systematic integrative literature review was conducted using a pre-defined search strategy and reported using PRISMA guidelines. Analysis was conducted iteratively and synthesis achieved using constant comparison to generate themes. DATA SOURCES: PubMed/MEDLINE, CINAHL, PsycINFO, Scopus, Web of Science, and Embase were searched for studies published between database inception and August 2020. Search terms included variations on arts/artists; patients/service users; and palliative or end-of-life care. Eligibility criteria was applied and study quality assessed. RESULTS: Seven reviewed studies explored literary, performing, and visual arts engagement in hospitals, hospice and community settings in England, the United States, France, and Canada. Study designs, interventions and findings were discussed. Themes identified across studies associated arts engagement with (1) a sense of well-being, (2) a newly discovered, or re-framed, sense of self, (3) connection with others, and (4) challenges associated with practice. CONCLUSION: Recommendations for future research were offered in order to maximize benefits, minimize risks and address complexity of artists' engagement in palliative care including: (1) consistency in methods and reporting; (2) inclusion of wider perspectives; and (3) key considerations for adapting the arts by health condition and art form.

'It's almost superstition: If I don't think about it, it won't happen'. Public knowledge and attitudes towards advance care planning: A sequential mixed methods study.

BACKGROUND: Internationally, participation in advance care planning is low. Whilst a community action approach is advocated, what the public know and understand about advance care planning is unknown. AIM: To assess public awareness, knowledge and attitudes towards advance care planning and identify strategies to raise awareness within a public health framework. DESIGN: Sequential mixed methods comprising a cross-sectional survey and focus group/interviews. SETTING/PARTICIPANTS: A random representative sample of adults from one region of the United Kingdom (n = 1201; response rate 56%) completed a face-to-face survey. Twenty-five participants consented to an additional focus group/interview held in a secure accessible location or via telephone. RESULTS: Most participants (78.7%) acknowledged the benefits of advance care planning conversations, however, two thirds did not want to think about advance care planning or find out more at present. Respondents were reluctant to broach advance care planning as it was linked to end of life care and funeral plans, and they did not wish to cause distress to their loved one. Respondents trusted their family to respect their wishes and they considered having an advance care plan in place would be of assistance in the future. Top-down leadership, normalisation, and increased education were identified as potential approaches to overcome barriers. CONCLUSIONS: Advance care planning was recognised as important despite limited awareness, lack of knowledge and misperceptions. Whilst a community action approach to enhance understanding and engagement was supported, a 'one size fits all' approach will not work; rather bespoke targeting is required with educational and media messaging aligned.

Young adults understanding and readiness to engage with palliative care: extending the reach of palliative care through a public health approach: a qualitative study.

BACKGROUND: Moving palliative care from a solely clinical focus to a more population based and community orientated approach is the hallmark of a much advocated public health approach to palliative care. Young adults are a vital cohort of the public, yet their understanding of palliative care has not been investigated. This study aimed to explore young adults' understanding of palliative care and identify factors that influence their engagement. METHODS: A purposive sample of young adults (n = 24) aged 18-29 years were recruited from one UK University. Semi-structured interviews were undertaken face to face or via telephone or Skype between November 2017 and February 2018. Thematic analysis using a framework approach and underpinned by a socioecological perspective was used to analyse the interviews. RESULTS: Three thematic categories were identified relating to intrapersonal and interpersonal influences, cultural and social influences and organisational and public policy influences. Palliative care was understood as supportive comfort care, delivered in the absence of cure, associated with the end of life and specifically focused on death and dying. Negative attitudes related to the context of care, which represented a static and hopeless situation. Whilst some reported positive attitudes, potential engagement was seen to be governed by a lack of knowledge and protective cultural norms. In terms of demonstrating readiness to engage with palliative care, participants requested clear information and suggested a normalising of palliative care through the education system. CONCLUSION: Young adults in this study were ready to find out more about palliative care and identified social media as a platform upon which to engage this population. However, their perception of a society that views palliative care as a subject for those directly affected, creates a barrier to engagement. This study identified the ingredients of a public health message and mediums for disseminating the message. However, findings also suggest that a cultural shift is required to recognise the potential of engaging young adults in health issues that cross the life span, empowering them not only as individuals but as vital members of community and society.

Examining public knowledge, attitudes and perceptions towards palliative care: a mixed method sequential study.

BACKGROUND: Palliative care is recognised as a public health issue with the need for earlier integration in the wider healthcare system. However, research indicates that it continues to be accessed late in the course of an illness, public understanding of palliative care is limited, and common misconceptions prevail. Strategies to address this are needed in order to reduce barriers to palliative care delivery and improve access. METHODS: An explanatory sequential mixed methods study, comprising a cross-sectional survey and interviews was undertaken. Sociodemographic characteristics, public awareness, knowledge and perceptions of palliative care were examined and strategies to raise awareness and overcome barriers within a public health framework were identified. Survey data were analysed using SPSS v25 with factor analysis and non-parametric statistics and qualitative data were analysed using thematic analysis. RESULTS: A total of 1201 participants completed the survey (58.3% female, mean age 61 years) and 25 took part in interviews. A fifth of participants (20.1%) had previously heard about palliative care and had an accurate understanding of the term. Being female, higher educated, married, and older, increased respondents' levels of awareness. The three most commonly held misconceptions included: Palliative care is exclusively for people who are in the last 6 months of life (55.4% answered incorrectly); A goal of palliative care is to address any psychological issues brought up by serious illness (42.2% answered incorrectly); and a goal of palliative care is to improve a person's ability to participate in daily activities (39.6% answered incorrectly). Talking about palliative and end of life care was advocated but societal taboos restricted this occurring with exposure limited to personal experience. CONCLUSIONS: Current knowledge gaps and misconceptions derived from limited ad hoc personal experiences and fear of engaging in taboo conversations may deter people from accessing integrated palliative care services early in a disease trajectory. The results indicate the need for public education programmes that move beyond merely raising awareness but provide key messages within a public health approach, which may change attitudes to palliative care thus ultimately improving end of life outcomes.

Protocol for a mixed methods exploratory investigation into the role and contribution of the healthcare assistant in out-of-hours palliative care.

BACKGROUND: Most people spend their last year of life at home, with many wishing to die there, but patients may need access to care after hours. Out-of-hours palliative care is delivered by multi-disciplinary teams including Health Care Assistants (HCA). However, little is known about the role, contribution and impact Health Care Assistants have on out-of-hours palliative care services. The aim of this study is to examine the Health Care Assistant role, contribution and impact on service delivery and patient care in out-of-hours community palliative care provided by hospice organisations. METHODS AND ANALYSIS: A mixed methods exploratory study consisting of four phases. Phase one involves a scoping review to systematically map and identify gaps in policy and literature on the HCA role in out-of-hours palliative care. In phase two, all United Kingdom hospices will be invited to participate in an online census to enable the development of a typology of out-of-hours services and the contribution of the Health Care Assistant. During phase three organisational case studies representing different service types will collect information from Health Care Assistants, patients, caregivers and service managers to gather qualitative and quantitative data about out-of-hours service provision and the Health Care Assistant role. Finally, phase four will synthesize and refine results through online focus groups. ETHICS AND DISSEMINATION: Ethical approval has been obtained for phase two through Ulster University Research Governance Filter Committee, Nursing and Health Research. Findings will be disseminated through practitioner and/or research journals, conferences, and social media.

The roles, responsibilities and practices of healthcare assistants in out-of-hours community palliative care: A systematic scoping review.

BACKGROUND: Access to community palliative care 'out-of-hours' - defined as care provided after the normal hours of work - is advocated globally. Healthcare assistants, who provide care under the direction of a qualified professional, are increasingly employed to help deliver such care, yet there is a little understanding regarding their role, responsibilities or contribution. AIM: The aim of this study was to identify the roles, responsibilities and contributions of healthcare assistants in out-of-hours community palliative care. DESIGN: Scoping review. DATA SOURCES: Five bibliographic databases (CINAHL, MEDLINE, EMBASE, PsycINFO and Scopus) and grey literature were searched using a predefined search strategy. The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews statement. RESULTS: The search yielded six papers using quantitative, qualitative and mixed methods. Results highlighted a lack of recognition of the role and contribution of healthcare assistants. A concurrent theme was that healthcare assistants continually monitored and responded to patient's and family's physical and emotional needs; there was also self-reported evidence indicating patient and family benefit, such as maintaining a sense of normality and support to remain at home. DISCUSSION: This review highlighted a dearth of evidence relating to the healthcare assistant role in out-of-hours palliative care. Limited evidence suggests they play a role, but that it is hidden and undervalued. Such invisibility will have a significant impact on the planning and delivery of out-of-hours palliative care. Future research is needed on role development for the benefit of patients and caregivers.

'Take more laxatives was their answer to everything': A qualitative exploration of the patient, carer and healthcare professional experience of constipation in specialist palliative care.

BACKGROUND: Constipation is a major problem for many older adults, more so for those who are receiving specialist palliative care. However, limited research reports the subjective experiences of constipation, despite evidenced differences between the healthcare professional and patient/carer perspective. AIM: The main aim of this study is to explore the experience of how constipation is assessed and managed within specialist palliative care from the patient, carer and healthcare professional perspective. DESIGN: Exploratory, qualitative design, utilising focus groups and interviews, and analysed using thematic analysis. SETTING/PARTICIPANTS: Six focus groups with 27 healthcare professionals and semi-structured interviews with 13 patients and 5 family caregivers in specialist palliative care units across three regions of the United Kingdom. RESULTS: Constipation impacted physically, psychologically and socially on patients and families; however, they felt staff relegated it on the list of importance. Lifestyle modifications implemented at home were not incorporated into their specialist palliative care plan within the hospice. Comparatively, healthcare professionals saw constipation solely as a physical symptom. Assessment focused on the physical elements of constipation, and management was pharmacologically driven. Healthcare professionals reported patient embarrassment as a barrier to communicating about bowel care, whereas patients wanted staff to initiate communication and discuss constipation openly. CONCLUSION: Assessment and management of constipation may not yet reflect the holistic palliative care model. A focus on the pharmacological management may result in lifestyle modifications being underutilised. Healthcare professionals also need to be open to initiate communication on bowel care and consider non-pharmacological approaches. It is important that patients and families are supported in self-care management, alongside standardised guidelines for practice and for healthcare professionals to facilitate this.

Patient and service-related barriers and facitators to the acceptance and use of interventions to promote communication in health and social care: a realist review.

BACKGROUND: More people living into old age with dementia. The complexity of treatment and care, particularly those with multiple health problems, can be experienced as disjointed. As part of an evaluation of a 'healthcare passport' for people living with dementia we undertook a realist review of communication tools within health and social care for people living with dementia. AIMS: To explore how a 'healthcare passport' might work in the 'real world' of people living with dementia through a better understanding of the theoretical issues related to, and the contextual issues that facilitate, successful communication. METHODS: A realist review was considered the most appropriate methodology to inform the further development and evaluation of the healthcare passport. We undertook a purposive literature search related to communication tools to identify (a) underlying programme theories; (b) published reports and papers on their use in various healthcare settings; (c) evidence on barriers and facliitators of their use. RESULTS: Communication tools were noted as a way of improving communication and outcomes through: (1) improvement of service user autonomy; (2) strengthening the therapeutic alliance; and (3) building integrated care. However, while intuitively perceived to of benefit, evidence on their use is limited and key barriers to their acceptance and use include: (1) difficulties in clearly defining purpose, content, ownership and usage; (2) understanding the role of family caregivers; and (3) preparation among healthcare professionsals. CONCLUSION: Patient-held communication tools may be helpful to some people living with dementia but will require considerable preparation and engagement with key stakeholders.

International palliative care research priorities: A systematic review.

BACKGROUND: There has been increasing evidence and debate on palliative care research priorities and the international research agenda. To date, however, there is a lack of synthesis of this evidence, examining commonalities, differences, and gaps. To identify and synthesize literature on international palliative care research priorities originating from Western countries mapped to a quality assessment framework. METHODS: A systematic review of several academic and grey databases were searched from January 2008-June 2019 for studies eliciting research priorities in palliative care in English. Two researchers independently reviewed, critically appraised, and conducted data extraction and synthesis. RESULTS: The search yielded 10,235 articles (academic databases, n = 4108; grey literature, n = 6127), of which ten were included for appraisal and review. Priority areas were identified: service models; continuity of care; training and education; inequality; communication; living well and independently; and recognising family/carer needs and the importance of families. Methodological approaches and process of reporting varied. There was little representation of patient and caregiver driven agendas. The priorities were mapped to the Donabedian framework for assessing quality reflecting structure, process and outcomes and key priority areas. CONCLUSIONS: Limited evidence exists pertaining to research priorities across palliative care. Whilst a broad range of topics were elicited, approaches and samples varied questioning the credibility of findings. The voice of the care provider dominated, calling for more inclusive means to capture the patient and family voice. The findings of this study may serve as a template to understand the commonalities of research, identify gaps, and extend the palliative care research agenda.

Examining constipation assessment and management of patients with advanced cancer receiving specialist palliative care: a multi-site retrospective case note review of clinical practice.

BACKGROUND: Constipation is a common symptom for patients receiving palliative care. Whilst international clinical guidelines are available on the clinical management of constipation for people with advanced cancer receiving specialist palliative care (SPC), the extent to which the guidelines are implemented in practice is unclear. This study aimed to examine clinical practices for the assessment and management of constipation for patients with advanced cancer within inpatient SPC settings. METHODS: A multi-site retrospective case-note review was conducted, consisting of 150 patient case-notes from three inpatient SPC units across the United Kingdom between August 2016 and May 2017. The variables selected for review were determined by the recommendations within the clinical guidelines. Descriptive statistics, cross tabulation, chi square, and bivariate correlations were used to examine clinical practices compared to policy guidelines for the assessment and management of constipation. Reporting was structured by the STROBE checklist for observational research (Additional File 2). RESULTS: A comprehensive assessment, including a full history and performing a physical exam, was recorded for 109 patients (73%), however, no standardised documentation was utilised. Assessment was nurse led, with variable involvement across sites of other members of the multidisciplinary team (MDT). Education on prevention was documented in 30 (20%) case-notes, and 53% recorded evidence of non-pharmacological intervention. Age, gender, and reason for admission did not impact on the likelihood of receiving a comprehensive assessment, education, or non-pharmacological intervention, however, significant differences were evident between sites. Pharmacological management was well developed and aligned to the guidelines however, 33% of patient case-notes recorded no information on the titration of laxatives. Twelve percent of patients experienced partial or complete bowel obstruction, and management strategies were variable. CONCLUSIONS: Constipation management is driven by a pharmacological approach, with little evidence of the implementation of preventative and non-pharmacological strategies. The nurse plays a key coordinating role in assessment; however, involvement and roles of the wider MDT varies. Accurate recording of care is essential when examining clinical practice and identifying areas for improvement. Further education is needed to equip HCPs with the knowledge and skills to ensure consistency in assessment and implementation of appropriate non-pharmacological/ preventative strategies.