Family carers, referred to in this paper as carers, are family members, friends and neighbours who look after others 'who need help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support. The care they give is unpaid' (NHS England, 2018). It is estimated that between 10% and 25% of the total population are carers across Europe, the United States and Australia

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.

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.

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Whilst loneliness and social isolation amongst older care-givers are becoming increasingly recognised, little is known about how these concepts impact on specific sub-groups of care-givers, such as older males. In the current study, we aimed to gain a better understanding of the experiences of loneliness and social isolation amongst older spousal male care-givers. Semi-structured interviews were undertaken with 24 participants, caring for a spouse/partner with a long-term chronic condition. After thematic analysis of the data, three themes were identified: dwindling social interactions, loneliness in the spousal relationship, and living with loneliness and social isolation. Study findings suggest that opportunities for social interactions gradually ‘dwindled’ due to a reluctance by older male care-givers to leave their spouse/partner at home alone, to accept offers of help or respite, or to attend social events without their spouse/partner. Consequently, social isolation increased. Feelings of physical and emotional loneliness were evident, and the loss of spousal companionship (such as loss of conversation and shared interests) increased loneliness. Individualised coping strategies were adopted including focusing on moments of positivity, talking to others and using prescribed medication. Findings provide insight into the experience of loneliness and social isolation for many older male spousal care-givers. This may facilitate a better understanding of older male care-givers’ support needs in addressing loneliness and social isolation, and should help to inform the development of targeted support services for this population.