Out-of-hours community palliative care: a national survey of hospice providers.

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.

Roles and responsibilities of the community palliative care key worker: a scoping review.

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.

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.

Impact of the COVID-19 pandemic on family carers in the community: A scoping review.

The COVID-19 pandemic has led to the closure or reduction in support services for family carers, resulting in increased social isolation and stress for this population. The current scoping review aimed to identify the impact of COVID-19 upon carers and support provided for them during the pandemic. Four online databases (CINAHL, Medline, PsycINFO and PubMed) were systematically searched on 16th December 2020 and updated on 16th July 2021 for articles written in English and published after January 2020, focused on the carer and the impact of COVID-19. Google scholar and reference lists of relevant papers were checked, and key authors were contacted for further relevant information. The database searches identified 976 citations, which resulted in 670 unique articles following the removal of duplicates. Title and abstract screening identified 63 articles for full-text review, 11 of which were subsequently excluded, leaving 52 articles which were subject to inductive thematic analysis. Four key themes were identified. Whilst a number of issues were identified that were exacerbated by the pandemic, others directly resulting from it were revealed. Few studies discussed support measures for carers and only one trial evaluated an intervention. This review identifies the impact of COVID-19 on carers, but there is a dearth of evidence to inform appropriate tailored support. Governments need to identify carers as a priority group in social care reform and commission co-produced, evidence and experience informed pathways to reinstate support services, potentially modelled on pandemic plans following the example currently being considered for the paid healthcare workforce.

Pre-loss grief experiences of adults when someone important to them is at end-of-life: A qualitative systematic review.

Pre-loss grief can be experienced by relatives before impending death; however, limited understanding exists about the impact of pre-loss grief on bereavement. This systematic review aimed to synthesize qualitative research evidence reporting adults' experiences of pre-loss grief within cancer care. Thirteen studies were selected, and three key themes identified. Findings indicate that relatives transitioned through lived experiences during end-stage cancer, and that meanings attached to these experiences influenced how they experienced pre-loss grief. Limited formal support was identified to navigate these experiences; however, context was seen as important, and skilled healthcare practitioners and physical environment were key to facilitating preparedness.

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.

Examining the support needs of older male spousal caregivers of people with a long-term condition: A systematic review of the literature.

AIM: The aim of this review was to identify and synthesise literature reporting on support needs of older male caregivers, who are providing care for a chronically ill spouse/partner at home. BACKGROUND: Traditionally, informal caregiving has been perceived as a feminised activity. Consequently, caregiving research has been dominated by female samples, and male caregivers are grossly under-represented. Given the growing recognition of caregiving as a gendered concept, and the rise in number of male caregivers, particularly in later life, the need for better understanding of the needs of male caregivers is important in order to plan effective support for this population. DESIGN: A systematic literature review. METHODS: Four electronic databases and grey literature were systematically searched. RESULTS: The systematic search resulted in 3,646 papers, eligibility criteria were applied to the full texts of 104 papers, and 11 papers met the inclusion criteria. Two core themes were identified: the need to maintain masculinity and the provision of social support. CONCLUSION: Findings suggest that men may have a gendered approach to caregiving based on dominant masculine norms. This can be manifested in a reluctance to ask for or accept help and a desire to retain control over caregiving. Findings also revealed isolation and loneliness experienced by older male caregivers, along with a preference for support to address this within a male-specific context. It is suggested that healthcare professionals should be cognisant of the male caregiver approach and should have an increased awareness of male caregivers support preferences, and of their own gendered assumptions, in order to provide effective support for this population. IMPLICATIONS FOR PRACTICE: Nurses have a key role in providing family support. Findings from this review suggest that nurses should be aware of the specific needs of older male spousal caregivers if they are to provide effective care and support to this population group.