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Background: An ageing prison population with complex health needs combined with punitive sentencing practices means palliative care for incarcerated individuals is increasingly important. However, there is limited evidence regarding the models of care delivery in high-income countries, and their associated challenges and benefits., Aim: To develop a typology of models of palliative care provision for incarcerated individuals, synthesise evidence of their outcomes and describe facilitators of and challenges in delivering different models of palliative and end-of-life care in prisons., Design: Scoping review following Arksey and O'Malley, with narrative synthesis. The protocol was registered prospectively (reviewregistry1260)., Data Sources: MEDLINE, EMBASE, CINAHL, PsycINFO, the Social Sciences Citation Index and grey literature were searched on 15th March 2023. The Mixed Methods Appraisal Tool (MMAT) was used for quality appraisal., Results: A total of 16,865 records were screened; 22 peer-reviewed articles and 18 grey literature sources met the inclusion criteria. Three models were identified: Embedded Hospice, Outsourcing Care and Community Collaboration. The Embedded Hospice model shows potential benefits for patients and prisons. Outsourcing Care may miss opportunities for comprehensive care. Collaborative Care relies on proactive prison-community relationships that could be formalised for improvement. Psychosocial and bereavement needs of those dying in prison and their caregivers lack sufficient documentation., Conclusion: Further research is needed to evaluate prison hospice costs and examine how prison hospices impact compassionate release usage. Beyond the USA, policies might formalise care pathways and recognise best practices. Further investigation to address psychosocial needs of people in prison with life-limiting illnesses and post-death bereavement support is required., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: The SARS-Cov-2 (COVID-19) pandemic affected the delivery of health and social care services globally. However, little is known about how palliative care social work services were impacted., Aim: The aim of this study was to capture and analyse data from palliative care social workers who provided professional support in a range of settings across 21 countries during the COVID-19 pandemic., Design: A cross-sectional survey-based design was used for this empirical study and this paper primarily focuses on the quantitative responses., Setting/participants: Participants, palliative care social workers, were drawn internationally via members of the EAPC Social Work Task Force and the World Hospice Palliative Care Social Work network., Results: We received 362 survey responses from 21 countries. Most (79%) respondents worked with adults in in-patient units or hospitals. The number of referrals during COVID-19 increased more in non-European countries, compared to European countries. The full range of social work services could no longer be delivered, existing services changed and 65.3% of participants reported higher levels of pressure during the pandemic, which was linked to higher levels of staff absence and additional duties. For many respondents (40.8%), this included facilitating online communication between patients and their families., Conclusions: Our findings indicate that restrictions to limit the spread of COVID-19 resulted in adaptations to service delivery, increased pressure on staff and moral distress, like other health and social care professions. All members of the palliative team need support and supervision to ensure effective interdisciplinary working and team cohesion.

Background: Research suggests that the public appear to be confused about the meaning of palliative care. Given the ageing population and associated increase in the number of patients requiring palliative care, it is vital to explore the public's understanding of this concept. Health-promoting palliative care seeks to translate hospice and palliative care ideals into broader public health practice., Aim: To explore public perceptions of palliative care and identify strategies to raise awareness., Design: An exploratory qualitative approach., Participants: Semi-structured telephone interviews were undertaken (N = 50) with members of the public who volunteered to participate in the study. The interviews focused on knowledge and perceptions of palliative care, expectations of palliative care services and the identification of strategies to raise public awareness of palliative care. The interviews were audio recorded and content analysed., Results: Most participants had a general knowledge of palliative care, largely influenced by their own personal experience. They identified that palliative care was about caring for people who were dying and maintaining comfort in the last days of life. Participant's expectations of services included the following: holistic support, symptom management, good communication and practical support to enable choice and carer support. Key aspects identified for promoting palliative care were the development of understanding and use of the term itself and targeted educational strategies., Conclusion: Experience of palliative care generates understanding in the general public who also have ideas for increasing knowledge and awareness. The findings can inform policymakers about strategies to raise public awareness of palliative care.

Aim: To explore how older people with lung and colorectal cancer view registered complementary therapy (CT) services in Northern Ireland., Background: A literature review highlighted gaps around information, access, and communication between patients and health professionals regarding CT services., Methods: Using structured interviews, a survey of 68 patients in one hospital and one hospice was conducted in Belfast, Northern Ireland., Results: All respondents felt that CT services should be better promoted and more easily accessible to older people with cancer. Some patients were concerned about the lack of written information provided regarding CT services, which they believed led to poorer uptake and uncertainty regarding the potential benefits. Others were concerned that engaging in or disclosing CT usage might negatively affect existing relationships with medical professionals., Conclusion: Patients should be offered high quality written information on CT services to enable choice, improve knowledge, and promote wider access. Increased physician education may facilitate provision of such information.

Many patients with lung cancer are symptomatic from diagnosis, and quality of life (QoL) may be maximised through the use of specialist palliative care in parallel with other treatments. This study explored anxiety, depression, and QoL in five patients, predominantly male (n=4) and with mean age 74 years, using a 'Breathing Space' clinic over a 4-week period. Breathing Space is a nurse-led multidisciplinary outpatient clinic using integrative care with lung cancer patients. The patients received weekly interventions to improve their wellbeing. Qualitative data were collected to explore their expectations and experiences of the clinic, and quantitative data were captured using the Eastern Cooperative Oncology Group Performance Status Rating (ECOG-PSR), the Hospital Anxiety and Depression Scale (HADS), the EQ-VAS, and the EQ-5D. These data were analysed using thematic content analysis and SPSS respectively. It was found that preconceived ideas about clinic attendance were replaced with positive impressions. Anxiety and EQ-VAS scores improved for all patients, and depression scores improved for four of the five patients, although no tests of significance were made. The qualitative data indicated that there were psychosocial benefits to attending the clinic.

With the unique set of values underpinning the social work profession, evidence-based practice must be informed by practitioners well versed in the impact of cultural, political, geographical, economic and general social factors on clinical work. Within the speciality of Palliative Care Social Work (PCSW), these factors influence the level of integration and upskilling of Palliative Care Social Workers (PCSWs). This article describes the collaborative methods used by Palliative Care Social Work (PCSW) practitioners and research-active academics to conduct a global survey of PCSWs about their professional experiences during the Coronavirus COVID-19 pandemic, with a view to better understand their respective roles and identities across regions. The authors of this study suggest that collaboration is key to drawing upon a diverse number of clinical, pedagogic and academic networks to optimise the survey response rate and raise the profile of PCSWs. The authors describe and reflect on the practical and cultural challenges encountered in conducting the survey. [ABSTRACT FROM AUTHOR]

The SARS-CoV-2 coronavirus-19 (COVID-19) generated life-defining challenges on a global level, affecting healthcare professionals, who faced the same imminent public health threat as patients and families. Reduced face-to-face contact, wearing personal protective equipment and enforcing visitor restrictions generated moral distress in healthcare professionals, unable to provide holistic care. This scoping review explored the impact of the COVID-19 pandemic on palliative care social workers (PCSWs). PubMED, CINAHL and PsycINFO were systematically searched. Empirical studies and reflective articles about palliative care social work during the pandemic were screened. Data extraction used Arksey and O'Malley's framework. Thematic analysis was underpinned by Braun and Clarke for identifying, analysing and reporting patterns. From 706 citations retrieved, 125 were selected for full-text review and 32 were included in the scoping review. Thematic analysis revealed three themes: (i) moral distress, (ii) transitioning and (iii) inequality. Implementing visitor restrictions caused moral distress and raised questions about their justification. Not being present at the time of death generated feelings of anger among bereaved family members. Virtual communication replaced face-to-face contact, yet improved access to Telehealth. Inequalities were illuminated and PCSWs advocated for disadvantaged populations, worked creatively to minimise suffering or stigma and supported peers. [ABSTRACT FROM AUTHOR]

In addition to addressing nursing and medical needs, the social needs of patients within hospice care require assessment (i.e., relationships, isolation, loneliness, societal inclusion or exclusion, negotiating adequate formal and informal support, or living with a life-limiting condition). The objectives of this scoping review are to examine the challenges of adult patients in receipt of hospice care during the COVID-19 pandemic and to identify innovative changes to care during the pandemic. The methodology of the scoping review follows the Joanna Briggs Institute framework developed in 2015. The context included hospice services (inpatient, outpatient and community). In August 2022, PubMed and SAGE journals were searched from 2020 onwards for studies published in English, which focused on COVID-19, hospice, social, support and challenges. Titles and abstracts were independently screened by two reviewers against agreed criteria. Fourteen studies were included. Data were independently extracted by authors. Emerging themes were loss due to COVID-19 restrictions, challenges for staff, barriers to communication and transition to Telemedicine, and positive effects of the pandemic. Pivoting to Tele-medicine and restricting visitors reduced the risk of spreading coronavirus but resulted in patients being socially isolated from loved ones, and a reliance on technology to have sensitive conversations. [ABSTRACT FROM AUTHOR]

Lung cancer is common in males as well as females and is one of the most common causes of cancer-related deaths worldwide. To gain an in-depth understanding of the 'pedagogy of suffering' (Frank, 1995, p. 145), the lived experiences of twelve adult patients in Northern Ireland diagnosed with advanced lung cancer were captured during two qualitative interviews with each patient (one month apart), which were audio recorded. This article outlines analysis which used Frank's (1995) narrative structures of restitution, chaos and quest, to provide rich insights into how patients narrated their 'suffering' over time. Findings revealed frustration and loss of faith in medical physicians due to a delayed diagnosis; resignation regarding treatment options and outcomes; externalisation of a disease that society fears, curbs life expectancy and causes biographical disruption; and powerlessness underpinned by a heroic return to put affairs in order, encourage others and share hopes for the future. In an era of health and social work practitioners experiencing increasing bureaucracy and caseloads, these findings highlight the importance of prioritising the psycho-social needs of patients, and supporting patients with the emotional and practical challenges of living with a life-limiting illness, and of skilful practitioners promoting peaceful closure in end-of-life care. [ABSTRACT FROM AUTHOR]

ABSTRACTObjective:Provision of bereavement support is an essential component of palliative care service delivery. While bereavement support is integral to palliative care, it is typically insufficiently resourced, under-researched, and not systematically applied. Our aim was to develop bereavement standards to assist palliative care services to provide targeted support to family caregivers.Method: We employed a multiple-methods design for our study, which included: (1) a literature review, (2) a survey of palliative care service providers in Australia, (3) interviews with national (Australian) and international experts, (4) key stakeholder workshops, and (5) a modified Delphi-type survey.Results: A total of 10 standards were developed along with a pragmatic care pathway to assist palliative care services with implementation of the standards.Significance Of Results: The bereavement standards and care pathway constitute a key initiative in the evolution of bereavement support provided by palliative care services. Future endeavors should refine and examine the impact of these standards. Additional research is required to enhance systematic approaches to quality bereavement care. [ABSTRACT FROM AUTHOR]

In the UK, end-of-life care strategies recommend patients and families are involved in decision making around treatment and care. In Bolivia, such strategies do not exist, and access to oncology services depends on finance, geography, education and culture. Compared to more developed countries, the delivery of oncology services in Latin America may result in a higher percentage of patients presenting with advanced incurable disease. The objective of this study was to explore decision-making experiences of health and social care professionals who cared for oncology and palliative care patients attending the Instituto Oncologico Nacional, Cochabamba (Bolivia). Patients were predominantly from the Quechua tradition, which has its own ethnic diversity, linguistic distinctions and economic systems. Qualitative data were collected during focus groups. Data analysis was conducted using Interpretative Phenomenological Analysis. Three interrelated themes emerged: (i) making sense of structures of experience and relationality; (ii) frustration with the system; and (iii) the challenges of promoting shared decision making. The study uncovered participants' lived experiences, emotions and perceptions of providing care for Quechua patients. There was evidence of structural inequalities, the marginalisation of Quechua patients and areas of concern that social workers might well be equipped to respond to, such as accessing finances for treatment/care, education and alleviating psychological or spiritual suffering. [ABSTRACT FROM AUTHOR]

Background: The World Health Organisation recognises palliative care as a global public health issue and this is reflected at strategic level. Despite this, palliative care may not be universally welcomed. Surveys over the last decade have suggested that the general public have a lack of knowledge and negative perceptions towards palliative care. A detailed and comprehensive understanding of public views is needed in order to target education and policy campaigns and to manage future needs, expectations and resourcing of end of life care. The aim of this study was to establish the current levels of awareness and attitudes towards palliative care among the general public in Northern Ireland. Methods: 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. Results: A total of 600 responses were obtained (response rate 17%). Responses indicated limited knowledge about palliative care. Female gender and previous experience influenced awareness in a positive direction. 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. Findings reveal the preferred place of care was the family home. The main barriers to raising awareness were fear, lack of interaction with health services and perception of lack of resources. A number of strategies to enhance awareness, access and community involvement in palliative care were suggested. Conclusions: Public awareness of the concept of palliative care and of service availability remains insufficient for widespread effective and appropriate palliative care to be accepted as the norm. In particular, those without previous family-related experiences lack awareness. This has implications for palliative care service provision and policy. 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 realise the objectives contained within international strategies for palliative and end-of-life care. [ABSTRACT FROM AUTHOR]