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Background: Dying well at home usually requires the help and assistance of an informal caregiver. This role is usually unpaid, wide‐ranging and oftentimes demanding. From diagnosis to death of a loved one, informal caregivers can experience one and frequently numerous transitions, however, little is known about this process. The purpose of this scoping review is to chart, explore and understand caregivers' experiences of transitioning when providing end‐of‐life care. A preliminary search of the literature indicated a paucity of research highlighting a notable absence of caregiver's perspectives and acknowledgements of the support they need to ensure successful transitions during this time. Consequently, this review has the potential to make a valuable contribution to the literature. Methods: Arksey and O'Malley's (2005) framework, further enhanced by Levac et al. (2010) and Peters et al. (2020) was used to conduct this scoping review. The Extension for Scoping Reviews (PRISMA‐ScR) guided reporting. A systematic search of the databases PUBMED, PsychINFO, CINAHL, EMBASE, and Web of Science and a selection of grey literature was undertaken from the year 1990 to date by two researchers. Titles and abstracts of the literature identified were screened and finally, a narrative synthesis of 11 articles was undertaken to answer the following research question: What is known from the literature about informal caregivers' transitions when caring for a dying person in the home? Conclusions: Current knowledge on this topic is limited; however, from this review, two main themes were identified: 'Challenges arising during transitioning' with subthemes of burden of care and fading away. The second theme 'Coping strategies' comprised subthemes of meaning‐making, seeking normality and hope. This evidence may support the development of transitional care interventions in the future and improve patient and caregiver outcome measures and experiences to inform a larger research study exploring this phenomenon. Patient or Public Contribution: N/A as this is a Scoping Review. What this paper contributes to the wider global community: An understanding of the experiences of transitioning when caring for a loved one dying at home could help mitigate challenges informal caregivers face when providing end‐of‐life care in the home.While informal caregivers are crucial to support people who want to die at home, the role is often invisible and family carers need support and recognition to reduce the burden of care and challenges they experience as they transition in their role. [ABSTRACT FROM AUTHOR]

Background: Special palliative care is provided in a range of settings including a patient's home (their primary place of dwelling), a hospice in-patient unit, or an acute hospital. The aim of the study was to evaluate the role of the specialist in palliative care clinical nurse specialist (SPC CNS) role in an acute hospital setting. Methods: This study was conducted using a mixed methods sequential explanatory approach in two phases; phase 1 involved completion of a study questionnaire (n = 121) and phase 2 involved part-taking in a focus group (n = 6) or individual interview (n = 4). Results: Phase 1 results indicated that respondents held positive attitudes towards the Specialist Palliative Care Clinical Nurses Specialist (SPC CNS) in relation to clinical care, education and patient advocacy. Phase 2 qualitative findings identified the importance of the role in terms of symptom management, education and support. Conclusions: This study provides an evaluation of a SPC CNS role since it was established in an acute hospital setting. The evidence indicates that there is a varied understanding of the role of the SPC CNS. The role was seen as an important one particularly in terms of referrals to and support provided by the SPC CNS, as well as recognition of the importance of the role is providing ongoing education to staff. [ABSTRACT FROM AUTHOR]

Background: This paper investigates the palliative care competencies (knowledge, behaviours, attitudes) and education needs of nurses and healthcare assistants (HCAs) who provide supportive (Level 2) palliative care. Methods: A mixed-methods study using a sequential exploratory design was used, with findings integrated across sources. Qualitative focus groups were conducted in 2018 with a sample of staff (n=11, all female; nurses=4; HCAs=7) providing supportive palliative care in a single service setting. A quantitative survey, also conducted in 2018, explored the issue with a wider sample within the same setting (n=36; nurses=18; HCAs=18; female=32). Results: Qualitatively, communication was highlighted as an important domain of the competence framework, with many participants acknowledging that the ability to communicate effectively is essential. Quantitatively, participants scored in the lower range for competency variables. A significant difference was observed between HCAs and nurses on measures of knowledge (t= -2.718; df=30; p<.05) and behaviour (t=-3.576; df=30; p<.05), with HCAs scoring significantly higher than nurses. In relation to education, while some participants report being indecisive regarding engaging in education/training, others highlighted the benefit of education, especially its ability to impact on their current practice. Conclusion: This research contributes to understanding palliative care competencies among nurses and HCAs working in palliative care, and has important implications for the education and training of nurses and HCAs working in Level 2 palliative care in Ireland. [ABSTRACT FROM AUTHOR]

Background: Informal caregivers represent the foundation of the palliative care workforce and are the main providers of end of life care. Financial pressures are among the most serious concerns for many carers and the financial burden of end of life caregiving can be substantial. Methods: The aim of this critical debate paper was to review and critique some of the key evidence on the financial costs of informal caregiving and describe how these costs represent an equity issue in palliative care. Results: The financial costs of informal caregiving at the end of life can be significant and include carer time costs, out of pocket costs and employment related costs. Financial burden is associated with a range of negative outcomes for both patient and carer. Evidence suggests that the financial costs of caring are not distributed equitably. Sources of inequity are reflective of those influencing access to specialist palliative care and include diagnosis (cancer vs non-cancer), socio-economic status, gender, cultural and ethnic identity, and employment status. Effects of intersectionality and the cumulative effect of multiple risk factors are also a consideration. Conclusions: Various groups of informal end of life carers are systematically disadvantaged financially. Addressing these, and other, determinants of end of life care is central to a public health approach to palliative care that fully recognises the value of carers. Further research exploring these areas of inequity in more depth and gaining a more detailed understanding of what influences financial burden is required to take the next steps towards meeting this aspiration. We will address the conclusions and recommendations we have made in this paper through the work of our recently established European Association of Palliative Care (EAPC) Taskforce on the financial costs of family caregiving. [ABSTRACT FROM AUTHOR]

Background: palliative radiotherapy can improve quality of life for patients who are symptomatic of advanced cancers. However, this treatment modality is underused and is often mistimed, which negates its potential benefit. Aim: the aim of this study was to assess nursing knowledge of palliative radiotherapy in the context of caring for patients with a cancer diagnosis. Methods: a quantitative method of research was employed using a questionnaire to assess palliative radiotherapy knowledge among a purposive sample of 162 oncology and palliative care nurses. Findings: the response rate was 48.14%. More than half of respondents reported their knowledge of radiotherapy as insufficient for their practice and almost all agreed they would benefit from more education. Conclusion: nurses require more training to identify when palliative radiotherapy would be an effective symptom control option; specific areas of focus for developing future radiotherapy educational programmes are highlighted. [ABSTRACT FROM AUTHOR]

Although being recognized by the World Health Organization as an essential domain of palliative care, spiritual care is still one of the most neglected component of the healthcare system. In this editorial, we set the context and invite contributions for a BMC Palliative Care Collection of articles titled 'Spirituality in Palliative Care'. [ABSTRACT FROM AUTHOR]

Background: A key aspect to the provision of palliative care is maintaining the dignity of the individual being cared for. Nurses working in the community setting need knowledge and skills to meet the needs of individuals who need palliative care and their families. Dignity Care Intervention Ireland is a community-based pilot project designed to implement a dignity care intervention for individuals with a life-limiting condition living in their own home. As part of the overall intervention, an education programme was developed for nurses working in the community. Method: Completion of a locally-designed questionnaire pre- and post-education. Results: Nurses working in the community setting welcomed and highly valued the Dignity Care Intervention Ireland education programme. There was an overall improvement in the understanding of palliative care for both groups and improved understanding of the principles of palliative care, with self-evaluated competence to apply these principles in daily clinical practice. Conclusion: The importance of education about palliative care to support the delivery of dignity-preserving care cannot be underestimated. Ensuring nurses have the requisite knowledge will enhance future practice development and subsequently improve care for patients with life-limiting conditions and their families. [ABSTRACT FROM AUTHOR]

Aims and Objectives To evaluate a dignity care intervention provided by community nurses seeking to address dignity concerns for people with advanced and life-limiting conditions. Background Evidence would suggest that dying people fear a loss of dignity and a central focus of palliative care is to assist people to die with dignity. Whilst community nurses have a key role to play in the delivery of palliative care, specific interventions for dignity are lacking. Design A mixed methods study using online survey and focus group interviews and thematic analysis to examine data. Methods Twenty four community nurses implemented the dignity care intervention for people with advanced and life-limiting conditions were recruited from four pilot sites across Ireland. Four focus group interviews and on line survey were conducted between March-June 2015. Results The community nurses found the dignity care intervention useful. It helped the nurses to provide holistic end-of-life care and assisted in the overall assessment of palliative care patients, identifying areas that might not otherwise have been noted. Whilst it was a useful tool for communication, they noted that it stimulated some emotionally sensitive conversations for which they felt unprepared. Conclusions Implementing the dignity care intervention in practice was challenging . However, the dignity care intervention facilitated holistic assessment and identified patient dignity-related concerns that may not have been otherwise identified. Further support is required to overcome barriers and enable dignity-conserving care. Relevance to clinical practice Ensuring dignity is a key aspect of palliative and end-of-life care; however, community nurses may not feel equipped to address this aspect of care. Implementing a dignity care intervention can assist in identifying patient dignity-related concerns and provision of holistic care. Community nurses need more training to assist in difficult conversations relating to dignity and end-of-life care. [ABSTRACT FROM AUTHOR]

Stigma is a common characteristic among lesbian, gay and bisexual (LGB) people's lives. The LGB population faces a challenge in finding ways to adapt to its stigmatised identity. Stigma and its related processes can have an isolating and negative affect on the LGB individual, who is seen as and often perceives themselves as different. Stigma can also have a negative effect on health and wellbeing and can influence the type of care received from health and social care professionals, including those working in palliative care. This paper presents a discussion of the impact that stigma has on LGB people who access and receive palliative and end-of-life care. [ABSTRACT FROM AUTHOR]

Aims and objectives To report an integrative review of evidence relating to dignity-conserving care in palliative care settings. It will also suggest avenues for future research. Background Research suggests that dignity is welcomed by those receiving palliative and end of life care. However, as dignity is a subjective term, it is not always explicit how this may be employed by nurses. Given that the preferred place of care for patients with palliative care needs is the home, the issue of dignity may be particularly important for community nurses. Therefore, synthesising evidence of dignity-conserving care for community nurses caring for people with palliative care needs provides clarity in a complex area of palliative care research. Design Integrative literature review. Method The review involved key bibliographic and review databases CINAHL, MEDLINE, EMBASE, ASSIA and PsycInfo. Medical Subject Headings and free terms were undertaken for articles published from January 2009-September 2014 and retrieved papers were assessed against inclusion criteria. Final included articles were reviewed for reported dignity-conserving care actions, which were classified under nine themes of the Dignity Model. Results Thirty-one articles were included. Nine Dignity Model themes were used to classify care actions: Level of Independence; Symptom Distress; Dignity-Conserving Perspectives; Dignity-Conserving Practices; Privacy Boundaries; Social Support; Care Tenor; Burden to Others; and Aftermath Concerns. Reported care actions included listening, conveying empathy, communication and involving patients in care. Conclusion Care actions could be classified under most of Dignity Model themes. However, there were less reported care actions related to Level of Independence and Aftermath Concerns, which meant that these had to be formulated independently. Future research should be structured around these areas to determine appropriate care actions for nurses to give dignity-conserving care that addresses these specific themes. Relevance to clinical practice Synthesising the available evidence of dignity-conserving care identifies evidence-based care actions and provides guidance to nurses in clinical practice caring for patients with palliative care needs. Future opportunities for research are identified to guide promotion of dignity in palliative care. [ABSTRACT FROM AUTHOR]

The article offers information on a study which explore the role of District Nurse (DN) in stating the patient's transition towards the dying phase. It mentions that qualitative focus group methodology was used to examine the perspectives of DNs. It shows that proper timing of conversation is the most significant preparation for a good death.

Background: In the past decade, the palliative care approach has been used in the care of frail older people living with debilitating chronic conditions, including dementia. Aim: To describe health professionals' experiences of assessing the symptoms of people with dementia using a cancer-patient-oriented symptom-assessment tool from a palliative care context. Method: This was a qualitative study that used semi-structured interviews (n=13) with clinical staff in three nursing homes prior to and following the implementation of the Minimal Documentation system for Palliative care (MIDOS) tool for assessing symptoms over a period of 6 weeks. Results: Baseline interviews showed specific concerns about symptom assessment, such as uncertainty about underlying symptoms in residents who appeared to be in distress. After the implementation of the MIDOS tool, participants reported that daily use of the tool was perceived as helpful in evaluating symptoms other than pain and improved internal communication between staff regarding clinical decision making. Conclusion: The MIDOS tool was perceived as a helpful and valuable complement to existing tools. Participants expressed some concerns regarding the subjective nature of perceiving symptoms and clinical decision making. The use of tools such as the MIDOS tool has the potential to enhance the quality of palliative care in dementia care. [ABSTRACT FROM AUTHOR]

Constipation can cause unnecessary discomfort and suffering for patients, and there appears to be a lack of awareness among nurses and doctors about its cause, impact and management. A large proportion of the evidence for the assessment and management of constipation in the context of palliative care is derived from the perspective of advanced cancer and from guidelines developed at a European level. Although constipation remains a problem for palliative care patients, early intervention combined with continuous and impeccable assessment can assist in its management and improve patient comfort at the end of life. [ABSTRACT FROM AUTHOR]

The article discusses the need to optimize palliative and supportive care services for those with advanced cases of heart failure. According to the article, optimizing this care is necessary because data shows that palliative care for heart failure is not as well-developed compared to cancer patients. To improve palliative service, health care providers should create a multidisciplinary approach to manage heart failure with pivot nurses educating and supporting the patients and their families.

A letter to the editor is presented in response to an article by Garry Lee about the role of palliative care in debate regarding assisted dying in a 2010 issue.

Editorial. Focuses on the need of palliative care and support for people suffering from non-malignant diseases. European policy on palliative care for people with advanced diseases; Difficulty in prognosis of non-malignant diseases; Care for patients regardless of diagnosis.

Advance care planning (ACP) is increasingly implemented in oncology and beyond, but a definition of ACP and recommendations concerning its use are lacking. We used a formal Delphi consensus process to help develop a definition of ACP and provide recommendations for its application. Of the 109 experts (82 from Europe, 16 from North America, and 11 from Australia) who rated the ACP definitions and its 41 recommendations, agreement for each definition or recommendation was between 68-100%. ACP was defined as the ability to enable individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and health-care providers, and to record and review these preferences if appropriate. Recommendations included the adaptation of ACP based on the readiness of the individual; targeting ACP content as the individual's health condition worsens; and, using trained non-physician facilitators to support the ACP process. We present a list of outcome measures to enable the pooling and comparison of results of ACP studies. We believe that our recommendations can provide guidance for clinical practice, ACP policy, and research. [ABSTRACT FROM AUTHOR]