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Background:The district nurse is identified as a keyworker in community based palliative care. However, a dearth of research exists on trainees' views and understanding of adopting the role upon qualification.Aims:The aim of this study was to explore the understanding and perceptions of district nurse trainees in relation to the palliative care key worker role.Methods:Data was gathered via online semi-structured interviews (n=10) and the results were analysed using a thematic model.Findings:The four evolving themes included: understanding of the palliative care key worker role scope and function; the level of preparation for the role; a juggling act and embedding the role in practice.Conclusion:The themes highlighted various drivers and barriers that reflect a degree of incongruence with policy and practice. Recommendations to standardise the palliative care key worker role, underpinned by formal preparation and clearly defined responsibilities may enhance future development and implementation of the role.

Objectives:To synthesize evidence regarding Chinese diasporas’ understanding, experience, and factors influencing engagement with advance care planning. Methods:A systematic integrative review using content analysis. Seven electronic databases (Embase, CINAHL, SCOPUS, Web of Science, Medline (OVID), PsycINFo, and The Cochrane Library) and gray resources were searched for studies from January 1990 to March 2022. Study quality appraisal was undertaken. Results:27 articles were identified and rated as moderate to good. Two overarching and interrelated themes were identified, “Awareness and knowledge”and “Engagement with advance care planning.” There are low levels of awareness, knowledge and engagement with advance care planning for Chinese diaspora. Findings highlight that this is influenced by two key factors. First, the geographic context and legal, cultural, and social systems within which the Chinese diasporas are living act as a potential catalyst to enhance awareness and engagement with advance care planning. Second, aspects of Chinese diasporas’ original culture, such as filial piety and a taboo surrounding death, were reported to negatively affect the promotion and engagement of advance care planning. Significance of Results:Chinese diasporas are intermediaries between two divergent cultures that intertwine to strongly influence engagement with advance care planning. Hence, a bespoke culturally tailored approach should be accommodated in future research and practice for Chinese communities in multicultural countries to further advance palliative and end-of-life care awareness among this group.

Background:Community-based palliative out-of-hours services operate outside normal working hours. However, little is known about the provision and delivery of such care.Aim:The aim of this study was to describe types of provision and delivery of out-of-hours palliative care services provided by UK hospices.Methods:Survey questionnaires were emailed to 150 adult hospices in the UK. Quantitative data were analysed using SPSS and qualitative data subjected to thematic analysis.Findings:Responding hospices (n=57) provided the following types of support: telephone advice 72% (n=41); care at home 70% (n=40); and rapid response 35% (n=20). There were variations between services regarding referral mechanisms, availability and workforce, and integration with statutory services was limited.Conclusion:Variation in the type of provision and delivery of out-of-hours palliative care services alongside limited integration with statutory care have contributed to inequity of access to community-based palliative care, and potentially suboptimal patient and informal caregiver outcomes.

This article illustrates the completion of a scoping review of the evidence relating to the role of the palliative care key worker, providing an insight into current literature. While advocated in international and national policies, the evidence underpinning this role is lacking, with only five empirical papers: two national and three international. The review identifies the need for the key worker role in palliative care; however, little consensus exists on who should adopt this role and their remits. Several implementation barriers are cited relating to communication and training. Further research on the development, implementation and consensus on the allocation of duties of the key worker role would expand the existing evidence base.

Background:Internationally, the demand for the provision of high-quality palliative care is increasing exponentially. Japan is a rapidly ageing society and it is therefore important to understand the current context to develop practice and inform future resource allocation in long-term care facilities (LTCFs).Aim:To describe the broad context of palliative care services, practice, education and policies in LTCFs in Japan.Methods:A process of expert elicitation and documentary review undertaken. The WHO palliative care model for public health was used as an analytical framework.Findings:Several deficits were identified regarding palliative care in Japanese LTCFs: a lack of palliative care strategy and standardised training for staff, and limited information on the use of palliative care medicines, quality improvement tools and frameworks.Conclusion:Such deficits need to be addressed to inform current nursing practice, future training needs for staff, quality care initiatives and decision making for advance care planning and resource allocation to respond to the ever-increasing demand for palliative care in these settings.

Aim:To explore district nurses' beliefs regarding referral of a patient receiving palliative care for physiotherapy.Method:Three focus groups, guided by the Theory of Planned Behaviour, were undertaken with a purposive sample of 16 district nurses. All were audio-recorded, transcribed, and subject to content analysis.Results:Nine beliefs were identified as influencing referral decisions, the majority of which were negative, such as the belief that physiotherapists lack palliative care skills and could foster false hope. Additional barriers to referral included a lack of contact and communication with physiotherapists, poor knowledge or experience of physiotherapy, unsuitable referral systems, and poor availability of services.Conclusion:These findings help to explain why so few patients receiving palliative care access rehabilitation services. To ensure that patients have appropriate access to palliative rehabilitation, there needs to be consideration of how the identified barriers can be overcome.

Aim: This study explored the experiences of palliative care that bereaved carers had while providing care to a dying loved one with chronic obstructive pulmonary disease (COPD). Method: Semi-structured interviews were undertaken with nine carers who had lost a loved one in the preceding 6 to 24 months. These interviews explored levels of satisfaction with disease management, symptom management, and end-of-life care. With permission, interviews were tape recorded, transcribed, and subjected to content analysis. Findings: Three themes emerged from the data: the impact of the caring experience, the lack of support services, and end-of-life and bereavement support. Carers experienced carer burden, lack of access to support services, a need for palliative care, and bereavement support. Conclusion: The findings provide a first insight into the experiences of carers of patients with advanced COPD. Bereaved carers of patients who had suffered advanced COPD reported that they had received inadequate support and had a range of unmet palliative care needs. Special attention should be paid to educating and supporting carers during their caring and bereavement periods to ensure that their quality of life is maintained or enhanced.

It has long been recognised that the majority of care provided in chronic illness comes not from health and social care professionals, but from family and friends. One such illness is chronic obstructive pulmonary disease (COPD), a leading cause of morbidity and mortality in the developed world. To explore the specific care needs of informal caregivers of patients with advanced COPD, interviews were conducted with seven active family caregivers. Interviews were taped, transcribed and content analysed to obtain the caregivers’ needs. Results confirm that family caregivers provide direct care with little support and assistance. Participants reported restricted activities of daily living and some emotional distress. There were knowledge deficiencies among caregivers relating to the COPD illness trajectory and little awareness of the potential of palliative care. Family caregivers need social and professional support while caring for a patient at home. This would help to ensure that their physical and emotional health does not suffer. There is a need to devise interventions to ensure family caregivers are supported.

Background: The increased incidence of chronic disease in recent years represents a significant challenge for the National Health Service. This coupled with substantial reforms in recent years has resulted in many changes in the delivery of healthcare, such as the proliferation of new nursing and midwifery roles. One such role is the Respiratory Nurse Specialist. Aims: The aim of this paper is to explore the role of the RNS from the post-holder and service perspective. This includes examining the organizational infrastructure, working relationships, career paths, perceived benefits and enablers and barriers required to make this role successful. Methods: A naturalistic case study methodology was adopted and a variety of data collection approaches were used. These included semi-structured interviews with the post-holder, line manager and Director of Finance, non-participant observation of practice, review of job description, audit data and other relevant documentation relating to the post. Findings: Findings revealed evidence of the role being innovative and effective. These related to the role context; role delivery, skills and knowledge required; the personal characteristics of the post-holder, the impact on multidisciplinary integrated working and the response to the needs of patients and communities. Conclusions: This case study illustrates the value and potential of nurses to lead and co-ordinate the care for patients with chronic diseases, and specifically the provision of a high-quality respiratory service.

Day hospice allows patients to remain living at home while attending a specialist palliative care center. This paper describes patient feedback (n=26) on medical, social and therapeutic out-patient palliative care services provided at one such facility in Northern Ireland. Medical records of all attending patients (n=50) were reviewed, and patients completed a semi-structured questionnaire. Patients’ comments on day hospice were largely positive. A number of suggestions for new service activities were made, and the need for education of multi-professional team members was recognized. Respondents recognized that day hospice allowed respite care for the family. Patients were very appreciative of the care that was offered—their concern for its continuance perhaps restraining any criticism they had. Such findings provide the opportunity for health professionals to gain further insights into day care to better meet patients’ needs.Day hospice allows patients to remain living at home while attending a specialist palliative care center. This paper describes patient feedback (n=26) on medical, social and therapeutic out-patient palliative care services provided at one such facility in Northern Ireland. Medical records of all attending patients (n=50) were reviewed, and patients completed a semi-structured questionnaire. Patients’ comments on day hospice were largely positive. A number of suggestions for new service activities were made, and the need for education of multi-professional team members was recognized. Respondents recognized that day hospice allowed respite care for the family. Patients were very appreciative of the care that was offered—their concern for its continuance perhaps restraining any criticism they had. Such findings provide the opportunity for health professionals to gain further insights into day care to better meet patients’ needs.

Links between homelessness and ill health are well established. However, homeless people are less likely to access traditional health care due to administrative barriers and hostility of professionals. For this reason more flexible modes of health care delivery, including nurse led care, have been explored. There has been a rapid increase in innovative nursing roles over the last two decades and the literature suggests that a clear role definition, good interprofessional working and supportive cultures are some of the features which ensure role effectiveness. A large study exploring new roles in nursing and midwifery in Northern Ireland identified an innovative nurse led approach in meeting the needs of single homeless people. The aim of this paper is to explore the effectiveness of this role using a public health framework. A case study design was used incorporating semi-structured interviews with analysis of secondary sources and a period of observation. Results demonstrated that the role fitted within a public health framework in that it involved assessment of need, skills to meet need, facilitation of access to care, partnership working, health promotion, health protection and influencing policy, and strategy development. The conclusion is that the role met the set criteria for innovative nursing roles. Furthermore, this practitioner meets the criteria for advanced nursing practice, providing evidence of effective nurse led care that meets the health agenda of targeting inequalities in health.

Hospice at home (HAH) services complement the role of the district nursing team, providing 24-hour palliative home care. However, little is known about district nurses’ experience or perceptions of working alongside the HAH service. This study surveyed a representative sample of district nurses (DNs) to ascertain their experience of working alongside an HAH service. A self-completed postal questionnaire comprised of 14 items was distributed to 128 DNs. The evaluation found significant levels of satisfaction. All respondents indicated that they would refer a patient to the service again. However, the need for improved communication and increased awareness among DNs about the HAH service were also identified. The findings support the idea that an HAH service can enable patients with advanced progressive disease to be cared for at home. While the findings of this study cannot be generalized, they add to the growing body of research about HAH services in palliative care.

BackgroundHospice at home (HAH) services complement the role of the district nursing team, providing 24-hour palliative home care. However, little is known about district nurses’ experience or perceptions of working alongside the HAH service.AimThis study surveyed a representative sample of district nurses (DNs) to ascertain their experience of working alongside a HAH service.MethodA self-completed postal questionnaire comprised of 14 items was distributed to 128 DNs.ResultsThe evaluation found significant levels of satisfaction. All respondents indicated that they would refer a patient to the service again. However, the need for improved communication and increased awareness among DNs about the HAH service were also identified.ConclusionThe findings support the idea that a HAH service can enable patients with advanced progressive disease to be cared for at home. While the findings of this study cannot be generalized, they add to the growing body of research about HAH services in palliative care.

This paper describes Phases One and Two of a project on smoking, cessation in pregnancy: the process of reaching consensus and developing feasible, evi dence-based guidelines. Phase Three of the project is piloting the guidelines, and Phase Four is ascertaining how women feel about use of the guidelines. The framework of nine key points is for use by any health and social care professional, and is being piloted in one health and social services board area in Northern Ireland. It is envisaged that the impact of the framework will be complemented by local policy, and education and training on holistic approaches for professionals.

IntroductionConstipation causes considerable suffering, either as a direct result of physical symptoms or due to related social and psychological problems. Despite this, uncertainty persists about the best management within hospice settings.AimTo synthesise the current evidence base on the assessment and management of constipation for palliative care patients within a hospice setting.MethodsA systematic search of MEDLINE, Embase, Cinahl, Scopus, and Cochrane databases was undertaken in April 2017 for empirical studies, written in English, on the assessment and management of constipation in the hospice, between 2007 and 2017. Two researchers independently reviewed and critically appraised all studies, conducted data extraction and undertook a thematic analysis.ResultsFourteen studies were included in the review including randomised trials (n=3), observational (n=5), and descriptive studies (n=6). The majority of the research was conducted in palliative care units and targeted either healthcare professionals or patients. The analysis highlighted a lack of standard definition of constipation. Clinicians experienced challenges in constipation assessment, with a need to combine patient reports with physical examination. Clinicians focused on pharmacological management, however, consideration around non-pharmacological aspects is also essential. Finally, the need to assess current practice for the management of constipation in light of changing priorities of care at end of life was emphasised.DiscussionSupporting clinicians to more effectively assess and manage the complexities of constipation in this setting is essential in improving overall symptom management. Gaps in the evidence base included defining constipation, constipation prevention, non-pharmacological management, and management in the dying patient.

IntroductionMarie Curie Palliative Care Day Services have been developed to support people with life-limiting illness who live in their own home. Patients attend on a regular basis, typically receiving a mix of clinical and social care. Despite their popularity and general satisfaction (Kernohan et al, 2006), there is ambiguity concerning the content.AimTo provide in-depth knowledge of day services by mapping services at three Marie Curie Hospice sites. MethodsWe: reviewed the records of a 25% random stratified sample of new patients attending in 2015, providing evidence on the content of care; undertook focus groups with staff, focusing on their knowledge and experience of providing Day Services.ResultsThe three services are characterised by:• wide-ranging care that spans physical, psychological, emotional and social domains;• care for both patients and their informal carers;• the development of patient-patient and patient-professional therapeutic relationships• extremely proactive care, based on regular assessment and follow-up;• being able to respond to a majority of identified needs ‘in-house’;• where such response in unavailable, ensuring onward referral and follow-up;• extensive liaison with other health and social care providers.ConclusionFindings contribute to the limited evidence base on the organisation and content of day services. They highlight how these services are firmly rooted in, but extend beyond, their immediate context to promote holistic, patient-centred care. This care is premised on meaningful therapeutic relationships, which form between patients themselves and between patients and day services staff.Reference. Kernohan WG, Hasson F, Hutchinson P, Cochrane B. Patient satisfaction with hospice day care. Support Care Cancer2006;14(5):462–8.

BackgroundMany studies in palliative care report that the majority of people would prefer to die at home.1It is recognised that the delivery of this care often requires the involvement of many different health care professionals and groups of family members. International evidence highlights the importance of patient choice and the notion of shared decision making in end of life care. However, little is known about how decisions are made.AimThe aim of this study is to identify what happens in the process of decision-making at end of life (EOL); to uncover participant experience of that process and contribute understanding the issues for patients, families and professionals.MethodsA multiple case study design using a qualitative approach was used. The sample included palliative patients living at home in the last 12 months of life (N=9); their family carers (N=10) and community based healthcare professionals, (general practitioners, nurses, social workers, allied healthcare practitioners) providing palliative care (N=56). Data collection included individual interviews (N=45), observation of interactions between participants, documentary review and focus groups (N=8) of professionals. Drawing on a shared decision making model, within and across case analysis was conducted using the Framework approach to identify themes and match patterns.ResultsDecisions are understood among the group via numerous one to one interactions. Subject to assumption and interpretation, decisions are often not explicitly stated and preferred place of death is avoided. Family are central to the process but marginalised from information. The process of death and the implications of dying at home are not explicitly discussed with patient or family.ConclusionsFindings suggest that shared decision making process at end of life is complex. Greater understanding of decision-making in this setting is required to improve care for patients approaching end of life.

BackgroundThe importance of good end-of-life care for older people in nursing homes is recognised internationally and competence based training has been highlighted to improve palliative care provision in this care setting.AimThis aim of this study was to evaluate a three day competency based, Regional Palliative and End-of-Life Care Learning and Development Programme targeted at nursing staff (n=1330) working within nursing homes (n=266) in Northern Ireland.MethodsBoth quantitative and qualitative methods were used in two key phases. In Phase 1 participants were asked to complete the Regional Palliative and End-of-Life Care Competency Assessment Tool before and after the training. The content of the programme was mapped to the domains of this tool. In Phase 2, following the programme, seven focus groups with registered nurses (n=29), telephone interviews with managers (n=8) and one focus group, which two managers chose, took place.Results619 participants completed the programme and 95.3% (n=590) completed the competency tool before and after the training. Descriptive statistics show participants self-reported a significant increase in core palliative care knowledge and skills across all five competency domains after training. Common themes emerging from focus groups and telephone interviews were: ‘Outcomes of attending the programme’, programme delivery and issues of access', challenges to palliative care in care homes' and ‘enablers to palliative care in the nursing home setting’.ConclusionsThis example of training mapped to a competency tool may have relevance given other national and international competency frameworks which exist. Factors relating to attrition have also been identified.

BackgroundInternational research suggests that the general public appear to be confused about what palliative care is and who provides it.1 2An understanding of public views is needed in order to target education and policy campaigns and to manage future needs, expectations and resourcing of care.AimThe aim of this study was to establish the current levels of awareness and perceptions of palliative care among the general public in Northern Ireland.MethodsA mixed methods study comprising two phases was undertaken. A community-based cross-sectional survey with a population of 3,557 individuals aged over 17 years was performed. Information was collected using a structured questionnaire consisting of 17 items. Open questions were subject to content analysis; closed questions were subject to descriptive statistics with inferential testing as appropriate. This was followed by semi structured telephone interviews (n=50).ResultsResponses indicated limited knowledge about palliative care. Respondents who worked in healthcare themselves or who had a close relative or friend who had used a palliative care service were more aware of palliative care and the availability of different palliative care services. The main barriers to raising awareness were fear, lack of interaction with health services and perception of lack of resources. A key aspect identified for promoting palliative care was the development of understanding and use of the term itself and targeted educational strategies.ConclusionsPublic awareness of the concept of palliative care and of service availability remains insufficient. An increased awareness of palliative care is needed, in order to improve knowledge of and access to services when required, empower individuals, involve communities and ultimately to improve the delivery of palliative and end-of-life care. (274)