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Background: Acute and late toxicities in patients treated with (chemo)radiotherapy for head and neck cancer (HNC) is common and can negatively impact quality of life and performance. Performance status instruments measure the functional ability to perform daily life activities and are important tools in the oncologic population. Aims: Since Dutch performance status scales for the HNC population are lacking, we conducted this study to translate the Performance Status Scale for Head and Neck Cancer Patients (PSS‐HN) into Dutch (D‐PSS‐HN) and to validate this version. Methods & Procedures: The D‐PSS‐HN was translated into Dutch according to the internationally described cross‐cultural adaptation process. It was administered to HNC patients and together with the Functional Oral Intake Scale completed by a speech and language pathologist at five different time points during the first 5 weeks of (chemo)radiotherapy. Patients were asked each time to complete the Functional Assessment of Cancer Therapy and the Swallowing Quality of Life Questionnaire. Pearson correlation coefficients were used to calculate convergent and discriminant validity and the evolution of D‐PSS‐HN scores was assessed by means of linear mixed models. Outcomes & Results: A total of 35 patients were recruited and > 98% of the clinician‐rated scales were completed. Convergent and discriminant validity were demonstrated, with all correlations rs between 0.467 and 0.819, and between 0.132 and 0.256, respectively. The subscales of the D‐PSS‐HN are sensitive to detect changes through time. Conclusion & Implications: The D‐PSS‐HN is a valid and reliable instrument to assess performance status in patients with HNC treated with (chemo)radiotherapy. It is a useful tool to measure HNC patients' current diet level and functional abilities to perform daily life activities. WHAT THIS PAPER ADDS: What is already known on the subject: Acute and late toxicities in patients treated with (chemo)radiotherapy for HNC are common and can negatively impact quality of life and performance. Performance status instruments measure the functional ability to perform daily life activities and are important tools in the oncologic population. However, Dutch performance status scales for the HNC population are lacking. Therefore, we translated the Performance Status Scale for Head and Neck Cancer Patients (PSS‐HN) into Dutch (D‐PSS‐HN) and validated this version. What this paper adds to existing knowledge: We translated the PSS‐HN and demonstrated its convergent and discriminant validity. The subscales of the D‐PSS‐HN are sensitive to detect changes through time. What are the potential or actual clinical implications of this work?: The D‐PSS‐HN is a useful tool to measure HNC patients' functional abilities to perform daily life activities. The tool can easily be used in clinical settings: since data collection duration is very short, this facilitates clinical (and research‐related) implementation of the scale. Patients' individual needs could be identified by using the D‐PSS‐HN, resulting in more appropriate approaches and (early) referrals if needed. Interdisciplinary communication could be facilitated. [ABSTRACT FROM AUTHOR]

Background: Countries with formal policies for palliative care, and advanced and integrated practices in this field, such as Portugal, face challenges in achieving excellence in care, particularly in home-based assistance. Issues include care coordination among providers, confusion regarding the roles of each health care professional in the network, and a lack of monitoring and evaluation of actions. Our objective was to analyze the implementation of palliative care in primary health care in Portugal. Methods: We conducted a qualitative, descriptive, and exploratory study in Portugal involving health care professionals with experience in palliative care. The data were collected through semistructured interviews and focus groups between March and October 2023. Eighteen health care professionals participated. We used the Alceste software for lexicographic analysis. The research was authorized by an Ethics Committee. Results: Four classes were identified; classes 1 and 2, comprising 77% of the corpus, addressed the study objectives. Participants highlighted inequitable access, strategic development plans with unattainable short-term goals; and low literacy. They emphasized the importance of legislation, professional training initiatives for generalist palliative care at home, and early referral. Home-based challenges included professionals' lack of exclusive dedication, absence of 24/7 coverage, and unavailability of capable family caregivers. The networks' response to hospital admissions and patient transitions from hospital to home, with access to the specialized team, was also inadequate. Conclusions: Health care professionals aim to increase patients' time spent at home, reduce emergency department visits, and minimize hospitalizations by leveraging the resources of the national palliative care network. In addition to investments to sustain network implementation and legally guaranteed palliative care rights, the country must focus on measurable indicators for evaluating and monitoring actions, providing better guidance in the short, medium, and long term. [ABSTRACT FROM AUTHOR]

Background: Individuals experiencing socioeconomic inequity have worse health outcomes and face barriers to palliative and end-of-life care. There is a need to develop palliative care programs tailored to this underserved population. Objectives: To understand the characteristics and symptom profiles of a group of urban patients experiencing socioeconomic inequity and receiving palliative care. Design: Descriptive exploratory analysis of a patient dataset. The patient dataset was generated through a pilot research study with patients experiencing socioeconomic inequity and life-limiting illness who received a community-based palliative care intervention. Methods: The intervention took place over 1 year in the Palliative Care Outreach and Advocacy Team, a community-based urban palliative care clinic in Edmonton, Alberta, Canada, serving persons experiencing socioeconomic inequity. Participants had to be at least 18 years of age, be able to communicate in English, require palliative care for a life-limiting illness, and be able to consent to inclusion in the study. Results: Twenty-five participants were enrolled. Participants predominantly identified as male and Indigenous, experienced poverty and housing instability, and had metastatic cancer. Our participants rated their pain, shortness of breath, and anxiety as more severe than the broader community-based palliative care population in the same city. Most patients died in inpatient hospices (73%). Conclusion: Our analysis provides an in-depth picture of an understudied, underserved population requiring palliative care. Given the higher symptom severity experienced by participants, our analysis highlights the importance of person-centered palliative care. We suggest that socioeconomic inequity should be considered in patients with life-limiting illnesses. Further research is needed to explore palliative care delivery to those facing socioeconomic inequity. [ABSTRACT FROM AUTHOR]

Background/Objective: The Individual Care Plan (ICP) for pediatric palliative care was developed to provide person-centered care for the individual child and family. Currently, a lack of clarity remains regarding the use and function of the ICP in daily practice. To further implement the ICP, it is important to identify how parents and healthcare professionals use the ICP and which obstacles or benefits are experienced. Methods: This mixed-method study used qualitative interviews and quantitative questionnaires in (bereaved) parents and healthcare professionals with experience with the ICP. Results: Parents and healthcare professionals used the ICP to establish a joint plan for care and treatment of the child to coordinate care and to achieve child- and family-centered care. This includes both obstacles that complicate achieving care goals and benefits that make it easier. Furthermore, responsibilities for the ICP remained unclear, and there was no set point in the illness trajectory for drawing up the ICP. Conclusions: Parents and healthcare professionals use the ICP as intended. However, uncertainties regarding timing, roles and responsibilities prevent optimal use of the ICP. Agreements on timing and responsibilities are needed for further ICP implementation in daily pediatric palliative care practice. [ABSTRACT FROM AUTHOR]

Background: In children's palliative care, the term "respite" refers to a temporary break offered to primary caregivers of a child with a life-limiting illness. The aim of this study was to assess the perceptions of parents who have benefited from respite care services in the Lumina Association, Bacău hospice unit and the benefits it can bring in improving their psycho-emotional state. Methods: The study consisted of quantitative research involving 34 parents/caregivers who responded to a questionnaire with 26 questions, and qualitative research which involved the organization of a focus group with 12 parents who benefited from respite services. Results: The use of respite services was associated with a significant reduction of psycho-emotional distress on the part of primary caregivers; 91% of respondents said that this type of service reduces the level of psycho-emotional stress. Conclusions: All participants in the study confirmed that the most important benefit of respite is the time gained to care for family and health. The development of respite services could reduce the risk of emotional exhaustion and mental health problems. [ABSTRACT FROM AUTHOR]

Infants, children and young people with life-limiting or life-threatening conditions often experience acute, transient pain episodes known as breakthrough pain. There is currently no established way to assess breakthrough pain in paediatric palliative care. Anecdotal evidence suggests that it is frequently underdiagnosed and undertreated, resulting in reduced quality of life. The development of a standardised paediatric breakthrough pain assessment, based on healthcare professionals' insights, could improve patient outcomes. This study aimed to explore how healthcare professionals define and assess breakthrough pain in paediatric palliative care and their attitudes towards a validated paediatric breakthrough pain assessment. This was a descriptive qualitative interview study. Semi-structured interviews were conducted with 29 healthcare professionals working in paediatric palliative care across the UK. An inductive thematic analysis was conducted on the data. Five themes were generated: 'the elusive nature of breakthrough pain', 'breakthrough pain assessment', 'positive attitudes towards', 'reservations towards' and 'features to include in' a paediatric breakthrough pain assessment. The definition and assessment of breakthrough pain is inconsistent in paediatric palliative care. There is a clear need for a validated assessment questionnaire to improve assessment, diagnosis and management of breakthrough pain followed by increased healthcare professional education on the concept. [ABSTRACT FROM AUTHOR]

Accessible summary People with intellectual disability live within their community and will require services to support them at end of life., Often people with intellectual disability are denied access to essential services., This paper identifies the experiences of community nurses caring for persons with an intellectual disability and palliative/end-of-life care needs., Summary Palliative care services have developed over the years to support all persons with life-limiting conditions. Moreover, services for people with an intellectual disability have moved from the traditional institutional setting to supporting people with an intellectual disability to live in their own community and family home. The expansion of palliative care services and integration of people with intellectual disability into their communities has resulted in an increased demand and greater diversity in the population groups accessing palliative care services. This study aims to describe the provision of community nursing support for persons with an intellectual disability and palliative/end-of-life care needs from the perspective of community nurses. A quantitative descriptive cross-sectional survey was employed. On receipt of ethical approval, data were collected through self-reporting questionnaires and descriptive analysis was conducted to describe frequencies and to identify patterns of the respondents using spss version 18. Only 85 people with an intellectual disability were referred to palliative/end-of-life care services over a 3-year period. Those delivering care expressed challenges including, understanding communication styles, late referrals, lack of time, knowledge and skills. Highlighted within the study were the benefits of liaison between family and professional and nonprofessional carers. Findings provide insight into the importance of teamwork, advance planning, knowing the person and best practice in providing palliative/end-of-life care for people with intellectual disability through collaboration. [ABSTRACT FROM AUTHOR]

This is an exploratory study to document the demographic characteristics, backgrounds, and services provided by trained and certified INELDA end-of-life doulas. Like birth doulas, end-of-life doulas represent a divergent, yet complementary form of care for dying persons. The purpose of end-of-life care is to facilitate comfort of the dying person and their closest family members. Surveys were completed by 618 end-of-life doulas regarding their demographic characteristics, employment backgrounds, services, and their experiences providing end of life care to dying persons and their closest family members. Follow-up qualitative interviews were also conducted with a subset of 39 respondents who completed the original survey. Results show that trained doulas are largely white (91.4%), female (90.4%), hold a Bachelor's (32.3%) or Masters (32.4%) degree, and are employed outside of their EOLD work (70.1%). Qualitative data details services provided to dying persons and family members in addition to the benefits and challenges of working with traditional healthcare settings. [ABSTRACT FROM AUTHOR]

Aim: To examine the multidimensional properties of caregiver burden among family caregivers of patients with advanced cancer in a palliative context. Design: A sequential, explanatory, mixed‐method study was performed. Methods: Family caregivers of patients diagnosed with advanced cancer were recruited from a palliative care department of a third‐level hospital in Sichuan Province, China. The Caregiver Burden Inventory, Social Support Rating Scale and Connor–Davidson Resilience Scale were used to collect quantitative data, and a total of 150 caregivers were recruited from January 2022 to September 2022. Qualitative data were collected through semi‐structured interviews, and a total of 22 caregivers were interviewed from October 2022 to November 2022. Survey data were analysed using descriptive statistics, and the factors of caregiver burden were identified using the Mann–Whitney U test, Kruskal–Wallis H test and Spearman correlations. Interpretative phenomenological analysis was performed to analyse the interview data to initially explore the multidimensions of caregiver burden. The following‐a‐thread method and convergence coding matrix were used for triangulation to examine the multidimensional properties of caregiver burden. Results: The participants experienced a moderate level of caregiver burden (32.97 ± 13.09). Through triangulation, six meta‐themes and nine meta‐subthemes were identified as multidimensional properties of caregiver burden, including physical (too many caring tasks and poor health condition), emotional (strong negative emotions resulting from patients' suffering and insufficient and ineffective family communication), social (less social interaction and social role conflict) and economic burdens, factors that aggravate burden (prevention and control of COVID‐19 and spousal relationship with patients) and factors that mitigate burden (social support). Conclusion: Multiple dimensions of caregiver burden were experienced by family caregivers of patients with advanced cancer in the palliative context. Family‐centred palliative care must be further developed. Implications for the profession: It is important to develop family‐centred palliative care. Therefore, the focus must be on developing a rational understanding of palliative care in public and a culture‐oriented death education in palliative units. Impact: This study adopted a mixed‐method approach to comprehensively understand the phenomenon of and factors in caregiver burden in the Chinese palliative oncology context.Our findings suggest that family caregivers in palliative oncology experience a moderate level of caregiver burden, with dimensions including physical, emotional, social and economic burdens, among which emotional burden is the most prominent.The findings of this study provide policy makers and nurse practitioners with targets to be addressed in family‐centred care in Chinese palliative units. Reporting Method: The results of this study are reported based on the guidelines of the Mixed‐Methods Article Reporting Standards. Patient or Public Contribution: Eligible caregivers were invited to participate in the study and semi‐structured interviews. Nurse managers of the palliative unit helped us access the patient‐management system. [ABSTRACT FROM AUTHOR]

Background A 'blended' (e-learning and facilitated workshops) training course for Group C staff (i.e. staff with relatively infrequent contact with end of life care) has been delivered across several English counties with the aim of improving end of life care in nursing and residential care homes. This paper evaluates the impact of the course on participants' understandings of and confidence in delivering end of life care in one nursing home, while also considering barriers to change in practice. Methods A mixed-methods case study approach, incorporating pre- and post-course questionnaires (SHA East of England End of Life Care Education Programme 'ABC' Project Work Force C or Non Nurse Workforce B Pre and Post Course Questionnaire; E-Learning in End of Life Care Study Pre and Post Course Questionnaire), documentary analysis, semi-structured interviews, and observation of course workshops. Participants were 20 members of staff at a nursing home in a city in the East of England, including 14 Health Care Assistants (carers) and 6 others (administrative, activities, hosting, and catering staff). The questionnaires and interviews assessed understandings of and confidence towards end of life care delivery. Results Improvements in participants' confidence in delivering end of life care were observed, particularly in the core competency areas of symptom management, communication, and advance care planning. A shift towards more detailed and more holistic understandings of end of life care was in evidence; some participants also championed end of life care in the home as a result of the course. Several barriers to changes in practice were encountered, including uneven participation, the absence of mechanisms for disseminating new insights and knowledge within the home, and a widespread perception that nurses' professional dominance in the home made sustainable change difficult to enact. Conclusions While blended e-learning courses have the potential to generate positive change in participants' understandings of and confidence about End of Life Care, organizational and inter-professional obstacles must be overcome in order to translate these changes into improved end of life care delivery in nursing (and residential) homes. [ABSTRACT FROM AUTHOR]

Background: COPD causes high morbidity and mortality, emphasizing the need for palliative care. Aim: To assess the effectiveness of palliative care in patients with COPD. Design: Cluster randomized controlled trial (COMPASSION study; Netherlands Trial Register (NTR): NL7644, 07-04-2019). Healthcare providers within the intervention group were trained to implement palliative care components into routine COPD care. Patients completed questionnaires at baseline, after 3 and 6 months; medical records were assessed after 12 months. The primary outcome was quality of life (FACIT-Pal). Secondary outcomes were anxiety, depression, spiritual well-being, satisfaction with care, acute healthcare use, documentation of life-sustaining treatment preferences and place of death. Generalized linear mixed modelling was used for analyses. Setting: Eight hospital regions in the Netherlands. Participants: Patients hospitalized for an acute exacerbation of COPD and positive ProPal-COPD score. Results: Of 222 patients included, 106 responded to the questionnaire at 6 months. Thirty-six of 98 intervention patients (36.7%) received the intervention. Intention-to-treat-analysis showed no effect on the primary outcome (adjusted difference: 1.09; 95% confidence interval: −5.44 to 7.60). In the intervention group, fewer intensive care admissions for COPD took place (adjusted odds ratio: 0.21; 95% confidence interval: 0.03–0.81) and strong indications were found for fewer hospitalizations (adjusted incidence rate ratio: 0.69; 95% confidence interval: 0.46–1.03). Conclusions: We found no evidence that palliative care improves quality of life in patients with COPD. However, it can potentially reduce acute healthcare use. The consequences of the COVID-19 pandemic led to suboptimal implementation and insufficient power, and may have affected some of our findings. [ABSTRACT FROM AUTHOR]

Palliative care in Malaysia has progressed steadily since its inception in 1991, and it has been integrated gradually into primary health care in the past decade. This study aims to assess the level of knowledge and the attitudes towards palliative care and its associated factors among primary care physicians. A cross-sectional study was conducted among primary care physicians using two validated questionnaires: the Palliative Care Knowledge Test (PCKT) and Frommelt's Attitude Toward Care of the Dying (FATCOD). The data were analysed using descriptive and linear regression statistics. A total of 241 primary care physicians from 27 different health clinics participated in the study. The mean PCKT score was 8.68 (2.94), whereas the mean FATCOD score was 106.8 (9.14). The maximum score for each questionnaire was 20 and 150, respectively. There was a significant positive relationship between knowledge and attitudes toward palliative care, with a p-value of 0.003 (CI 0.22–1.04) and an r-value of 0.42. Palliative care knowledge among primary care physicians is still low despite their overall positive attitude towards the service. This finding suggests the urgent need for more education and training on palliative care for primary care physicians in Malaysia. [ABSTRACT FROM AUTHOR]

Background: Communication and advance care directives may be affected by the presence of dementia. We sought to describe the information and end-of-life preferences provided to nursing homes residents and their families. Methods: Trained nurses collected information from 124 residents randomly selected with palliative care needs from eight nursing homes. Results: A total of 54.4% of the residents with dementia had been provided with information about their state of health, compared to 92.5% of the residents without dementia (p < 0.01); family members exhibited no differences regarding information (p = 0.658), regardless of whether the resident was cognitively impaired. Most advance care interventions remained unexplored, except for cases where a transfer to hospital (81.5%) or serotherapy (69.4%) was desired. Decisions regarding palliative sedation (p = 0.017) and blood transfusion (p = 0.019) were lower among residents with dementia. Conclusions: Residents, especially residents with dementia, are provided with limited information and their preferences are inadequately explored. [ABSTRACT FROM AUTHOR]

Objective: The aim of this study was to evaluate the implementation of Value‐Based Healthcare principles for lung cancer patients in a large Belgian hospital. This hospital implemented a digital platform for the collection of patient‐reported outcomes and the standardisation of care pathways. Also, a follow‐up by the multidisciplinary care team was put in place. Methods: Evaluation was done by employing a mixed method approach with data analysis of all included patients (n = 201), a pilot study (n = 30) and semi‐structured interviews with the care team (n = 5). Results: Overall, 95% of all lung cancer patients of two thoracic oncologists agreed to participate in the digital follow‐up during the period January 2018 to September 2020 (201 participating patients). The response rates of those patients were high: 92% of the weekly questionnaires and 90% of the 6‐weekly ICHOM questionnaires were responded. Based on the pilot study, we conclude that questions are clear and the platform is user‐friendly for 90% of patients in the pilot. The interviews revealed that the weekly follow‐up has a positive impact on the patient–provider communication and makes it easier to discuss psychological and palliative care needs. Conclusion: This study shows a successful implementation of Value Based Healthcare with weekly digital follow‐up. Clinical trial registration is as follows: www.clinicaltrials.gov, NCT04712149. [ABSTRACT FROM AUTHOR]

Oncology nurses often face complex end-of-life issues, underlining their need for specific training in palliative care. In this context, nurses experience several emotional and psychological dilemmas, which are often difficult to manage and result in high levels of workplace stress. This study aimed to determine the levels and work-related factors of workplace stress among oncology nurses. A descriptive baseline study was performed as part of a large four-phase study based on quantitative data collected from Portuguese oncology nurses. Of the 32 participating nurses, most were women, and the mean age was 42.69 ± 10.04 years. Overall, nurses revealed moderate levels of stress. Younger nurses with less professional experience had difficulties dealing with issues related to death and dying. This pilot study supported the development of a program of six Stress Management Training Workshops (SMTW) to reduce stress and increase adaptative strategies. Assessing workplace stress among oncology nurses should be the focus of intervention by managers and institutional leaders. [ABSTRACT FROM AUTHOR]

Measuring the quality of life in family caregivers of people in palliative care is essential to document the impact of care on the caregiver. This study aimed to adapt and validate a Latin American‐Spanish version of the QOLLTI‐F scale in family caregivers of palliative care patients. This study was conducted between May and November 2019 in Medellin, Colombia. We develop three phases: translation and semantic adaptation (n = 17), face and content validity (n = 21), construct validity, internal consistency (n = 208) and test–retest reliability (n = 35). Main family caregivers of stage‐IV cancer patients receiving palliative treatment, participated. In the translation and semantic adaptation, some items were adjusted following the caregivers' recommendations. In face validity, Fleiss' Kappa was over 0.65 for family caregivers. In content validity, Fleiss' Kappa ranged from 0.54 to 1 for experts. In construct validity, the original version seven‐factor structure did not show appropriate model fit indices. The data revealed instead a new 3‐factor structure related to (1) impact of care‐giving, (2) social and healthcare interactions and (3) meaning of life. Cronbach's alpha was 0.83 for the overall scale. Test–retest reliability was 0.87 between measurements 1 and 2. This study found that The Latin American‐Spanish version of the QOLLTI‐F scale is an understandable, useful, and relevant tool for family caregivers of people with cancer receiving palliative care. Future research is needed to confirm the factor structure identified in this study. [ABSTRACT FROM AUTHOR]

Project ECHO (Extension for Community Healthcare Outcomes) uses videoconferencing technology to support and train healthcare professionals (HCPs) remotely. A 4‐month fortnightly ECHO programme was developed and implemented to enhance palliative care provision by primary care therapists. Teaching and case‐based discussions were facilitated by palliative care specialists. A mixed‐methods cohort study was used to evaluate the project. ECHO participants completed pre‐ and post‐programme questionnaires regarding their knowledge and skills across key palliative care domains. Focus groups were held before programme commencement to explore participants' attitudes and experiences of palliative care and after programme conclusion to explore their experiences of ECHO. Twenty‐six primary care HCPs commenced the ECHO programme. Mean scores in self‐rated confidence in knowledge and skill improved significantly (p <.002) following the programme. Twenty‐one primary care HCPs completed the post‐ECHO surveys and scores of self‐rated confidence in knowledge and skills were significantly higher than pre‐ECHO scores. Ninety‐five percent of participants (n = 19) reported ECHO met their learning needs and was an effective format to enhance clinical knowledge. Eighty‐five percent of participants (n = 17) would recommend ECHO to their colleagues. Project ECHO improved palliative care knowledge and skills of primary care HCPs in Ireland, with potential to address the growing need for integrated palliative care services. [ABSTRACT FROM AUTHOR]

Background: Research has indicated that clinical staff in long‐term care often lack self‐confidence in palliative care delivery, particularly at the end of life. Goals: (a) To examine the contribution of age, palliative care education, palliative care work‐related experience and psychological empowerment to palliative care delivery confidence and (b) to explore the social reality shaping those factors for long‐term care staff. Design: Explanatory sequential design. Setting: Twenty long‐term care facilities in two district health boards in New Zealand. Participants: Phase 1:139 clinical staff. Phase 2:46 clinical staff who provided care in the last month of a residents' life. Methods: Phase 1: Cross‐sectional survey. Phase 2: Individual semi‐structured interviews. Results: Phase 1: Previous experience (β =.319) and psychological empowerment (β =.311) contribute most to predicting an increase in palliative care delivery confidence. Phase 2: Four factors underlay palliative care delivery confidence, (a) mentorship by hospice nurses or colleagues (b) contextual factors (organisational culture, resources and experience), (c) maturity and (d) formal education. Conclusion: Organisational leadership should use multiple strategies (e.g. power‐sharing, increased opportunities for mentorship) to improve staff palliative care delivery confidence. Implications for Practice: This study adds to the literature in understanding the predictors of palliative care delivery confidence specific to long‐term care staff. The results indicate that educational interventions must be contextually appropriate to achieve sustainable improvements in palliative care confidence and ultimately in resident care at the end of life. [ABSTRACT FROM AUTHOR]

Aims and objectives: To develop and psychometrically assess a survey instrument identifying ethical issues during palliative care provision in nursing homes. Background: Registered nurses and healthcare assistants have reported ethical issues in everyday palliative care provision. Identifying these issues provides evidence to inform practice development to support healthcare workers. Design: Cross-sectional survey of Registered nurses and healthcare assistants in nursing homes in one region of the UK. Method: A survey instrument, “Ethical issues in Palliative Care for Nursing homes”, was developed through the findings of qualitative interviews with Registered nurses and healthcare assistants in nursing homes and a literature review. It was reviewed by an expert panel and piloted prior to implementation in a survey in 2015 with a convenience sample of 596 Registered nurses and healthcare assistants. Descriptive and exploratory factor analyses were used to assess the underlying structure of the Frequency and Distress Scales within the instrument. Results: Analysis of 201 responses (response rate = 33.7%) revealed four factors for the Frequency Scale and five factors for the Distress Scale that comprise the Ethical issues in Palliative Care for Nursing homes. Factors common to both scales included “Processes of care,” “Resident autonomy” and “Burdensome treatment.” Additionally, the Frequency Scale included “Competency,” and the Distress Scale included “Quality of care” and “Communication.” Conclusion: The Ethical issues in Palliative Care for Nursing homes instrument has added to the palliative care knowledge base by considering the ethical issues experienced specifically by Registered nurses and healthcare assistants within the nursing home. This research offers preliminary evidence of the psychometric properties of the Ethical issues in Palliative Care for Nursing homes survey instrument. Relevance to practice: The two largest factors highlight the need to address the organisational aspects of caring and provide training in negotiating conflicting ethical principles. [ABSTRACT FROM AUTHOR]

Aims and objectives: To investigate the knowledge of and attitudes towards palliative care for advanced dementia and their associations with demographics among nursing staff, including nurses and nursing assistants, in long-term care settings. Background: Nursing facilities are places where persons with dementia die; therefore, providing quality end-of-life care to residents with advanced dementia is crucial. To date, little attention has been paid to palliative care practice for patients with advanced dementia. Design: A descriptive, cross-sectional, survey design was used. Methods: In total, a sample of 300 nurses (n = 125) and nursing assistants (n = 175) working in long-term care settings in Taiwan participated in this study. Two instruments were administered: demographic characteristics and responses to the Questionnaire of Palliative Care for Advanced Dementia. Descriptive statistics and multiple regression were used for data analysis. Results: Overall, the nurses and nursing assistants had moderate mean scores for both knowledge of and attitudes regarding palliative care for advanced dementia. Additionally, nursing staff who were nurses with greater work experience and those who had received palliative care and hospice training had greater knowledge of palliative care. In addition, nursing staff who had received dementia care training and who had worked in nursing homes had higher levels of positive attitudes towards palliative care. Conclusions: This study indicates the need to provide nurses and nursing assistants with more information about palliative care practice for people with advanced dementia. Particularly, providing education to those who are nursing assistants, who have less working experience, who have not received palliative and dementia care training, and who have not worked in nursing homes can improve overall nursing staff knowledge of and attitudes towards palliative care. Relevance to clinical practice: Continuing education in principles of palliative care for advanced dementia is necessary for currently practicing nursing staff and should be developed according to their educational background and needs. [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]

ABSTRACT Over half a million Americans are affected by cirrhosis, the cause of end-stage liver disease (ESLD). Little is known about how symptom burden changes over time in adults with ESLD and their informal caregivers, which limits our ability to develop palliative care interventions that can optimize symptom management and quality of life in different patient-caregiver dyads. The purpose of this article is to describe the background and design of a prospective, longitudinal descriptive study, 'Symptom Burden in End-Stage Liver Disease Patient-Caregiver Dyads,' which is currently in progress. The study is designed to (i) identify trajectories of change in physical and psychological symptom burden in adults with ESLD; (ii) identify trajectories of change in physical and psychological symptom burden in caregivers of adults with ESLD; and (iii) determine predictors of types of patient-caregiver dyads that would benefit from tailored palliative care interventions. We aim for a final sample of 200 patients and 200 caregivers who will be followed over 12 months. Integrated multilevel and latent growth mixture modeling will be used to identify trajectories of change in symptom burden, linking those changes to clinical events, and quality of life outcomes and characterizing types of patient-caregiver dyads based on patient-, caregiver-, and dyad-level factors. Challenges we have encountered include unexpected attrition of study participants, participants not returning their baseline questionnaires, and hiring and training of research staff. The study will lay the foundation for future research and innovation in ESLD, end-of-life and palliative care, and caregiving. [ABSTRACT FROM AUTHOR]

Background: Providing end of life care in rural areas is challenging. We evaluated in a pilot whether nurse practitioner (NP)-led care, including clinical care plans negotiated with involved health professionals including the general practitioner(GP), ± patient and/or carer, through a single multidisciplinary case conference (SMCC), could influence patient and health system outcomes. Methods: Setting -- Australian rural district 50 kilometers from the nearest specialist palliative care service. Participants: Adults nearing the end of life from any cause, life expectancy several months. Intervention- NP led assessment, then SMCC as soon as possible after referral. A clinical care plan recorded management plans for current and anticipated problems and who was responsible for each action. Eligible patients had baseline, 1 and 3 month patient-reported assessment of function, quality of life, depression and carer stress, and a clinical record audit. Interviews with key service providers assessed the utility and feasibility of the service. Results: Sixty-two patients were referred to the service, forty from the specialist service. Many patients required immediate treatment, prior to both the planned baseline assessment and the planned SMCC (therefore ineligible for enrollment). Only six patients were assessed per protocol, so we amended the protocol. There were 23 case conferences. Reasons for not conducting the case conference included the patient approaching death, or assessed as not having immediate problems. Pain (25 %) and depression (23 %) were the most common symptoms discussed in the case conferences. Ten new advance care plans were initiated, with most patients already having one. The NP or RN made 101 follow-up visits, 169 phone calls, and made 17 referrals to other health professionals. The NP prescribed 24 new medications and altered the dose in nine. There were 14 hospitalisations in the time frame of the project. Participants were satisfied with the service, but the service cost exceeded income from national health insurance alone. Conclusions: NP-coordinated, GP supported care resulted in prompt initiation of treatment, good follow up, and a care plan where all professionals had named responsibilities. NP coordinated palliative care appears to enable more integrated care and may be effective in reducing hospitalisations. [ABSTRACT FROM AUTHOR]

Objectives: Despite palliative care being standard for patients with chronic and/or life-limiting conditions, a perceived lack of clarity regarding the definition and scope of palliative care persists. We aimed to identify health care professionals' (HCPs) perspectives, education, and support needs related to palliative care provision in a large private Australian tertiary hospital. Methods: A validated survey was administered and four focus groups were conducted with multidisciplinary HCPs. Results: The survey response rate was 50% ( n = 302). Although critical care HCPs scored symptom management and patient/family interaction items more highly compared with other HCPs, mean scores (<4.0) for both groups indicated participants lacked confidence to perform this aspect of care independently. Critical care HCPs were more comfortable caring for dying patients ( p < 0.001) and talking to families about death ( p < 0.001). Ward HCPs were more supportive of early referral to palliative care ( p < 0.001). Cancer diagnoses were overestimated as common causes of death. Education needs focused on ethical issues, end-of-life communication skills, dealing with delirium, and use of the Liverpool Care Pathway. Key themes identified from the four focus groups were (1) delays or nonreferral to palliative care created considerable stress and feelings of inadequacy despite a perceived understanding of the broader definition of palliative care and (2) HCPs commonly focused on end-of-life care. Conclusion: Ambiguity regarding the meaning and delivery of palliative care persists in the acute care setting across disciplines. Results confirmed that innovative approaches to education and upskilling HCPs in palliative care and referral pathways is warranted. [ABSTRACT FROM AUTHOR]

In Jordan, little is known about cancer-related symptoms prevalence, severity, and its impacts on patients’ quality of life. Therefore, this study was conducted to estimate cancer-related symptoms prevalence, severity, and predictors of quality of life of cancer patients in Jordan. A descriptive cross-sectional survey design was used. The sample consisted of 498 Jordanian cancer patients. There were slightly more males (51.6%) and a mean age of 44.3 (SD = 15.3) years. The mean of the number of symptoms reported by patients was 11 (SD = 3.3). The most prevalent symptoms were fatigue (92.5%), feeling drowsy (87.1%), lack of appetite (86.3%), being distressed (86.1%), and pain (85.5%). Furthermore, Jordanian cancer patients had low mean total scores for quality of life at a level of 18.5 (SD = 4.9). A comprehensive palliative care program is recommended, led by a representative from the Ministry of Health, to integrate palliative care within the current health care system in Jordan. [ABSTRACT FROM AUTHOR]

Aim To describe a research protocol designed to formulate a conceptual framework of informal caregiver resilience in palliative care. Background Resilience is the ability to adapt or to improve one's own conditions following experiences of adversity. The end-of-life care provided by informal caregivers is a form of adversity because it entails objective difficulties, emotional involvement and deep levels of introspection that have been stimulated by the death event. Resilience has not yet been addressed in association with end-of-life care. Design This is a multicentre cross-sectional study. Methods We will administer a questionnaire to a sample of informal end-of-life caregivers to collect data about the main psychological, behavioural and healthcare factors that impact resilience. Data analysis will include descriptive and correlational statistical techniques, multiple linear regressions and structural equation modelling. Data will be collected in multiple palliative care centres and statistical analysis will be carried out using software: SPSS version 19.0 and MPlus version 7.3. The study is supported by a grant from the Centre of Excellence for Nursing Scholarship in Italy (Research Grant number 2.13.10) that was awarded in March 2013. Discussion The study seeks to identify the predictive, mediating and moderating roles of select variables: caregivers' self-efficacy, burdens of caregiving, depression and resilience. The results of this analysis will impact the theoretical study of resilience in palliative care and will have practical implications for interventions aimed at supporting caregivers through healthcare teams. [ABSTRACT FROM AUTHOR]

Background: There are identified gaps in the care provided to children with cancer based on the self-identified lack of education for health care professionals in pediatric palliative care and in the perceptions of bereaved parents who describe suboptimal care. In order to address these gaps, we will implement and evaluate a national roll-out of Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics), using a Train-the-Trainer' model. Methods/design: In this study we are using a pre- post-test design and an integrated knowledge translation approach to assess the impact of the educational roll-out in four areas: 1) self-assessed knowledge of health professionals; 2) knowledge dissemination outcomes; 3) practice change outcomes; and 4) quality of palliative care. The quality of palliative care will be assessed using data from three sources: a) parent and child surveys about symptoms, quality of life and care provided; b) health record reviews of deceased patients; and c) bereaved parent surveys about end-of-life and bereavement care. After being trained in EPEC®-Pediatrics, 'Master Facilitators' will train 'Regional Teams' affiliated with 16 pediatric oncology programs in Canada. Each team will consist of three to five health professionals representing oncology, palliative care, and the community. Each team member will complete online modules and attend one of two face-to-face conferences, where they will receive training and materials to teach the EPEC®-Pediatrics curriculum to 'End-Users' in their region. Regional Teams will also choose a Tailored Implementation of Practice Standards (TIPS) Kit to guide implementation of a quality improvement project in their region; support will be provided via quarterly meetings with Co-Leads and via a listserv and webinars with other teams. Discussion: Through this study we aim to raise the level of pediatric palliative care education amongst health care professionals in Canada. Our study will be a significant step forward in evaluation of the impact of EPEC®-Pediatrics both on dissemination outcomes and on care quality at a national level. Based on the anticipated success of our project we hope to expand the EPEC®-Pediatrics roll-out to health professionals who care for children with non-oncological life-threatening conditions. [ABSTRACT FROM AUTHOR]

Background Sheffield Profile for Assessment and Referral for Care ( SPARC) was developed in response to concerns that palliative care may not be reaching all people who could benefit from it. Acceptability of the tool is an important step in developing its future use. Aims To elicit the views of a wide variety of members of consumer and self-help support groups concerned with health care on the relevance, acceptability and the overall perception of using SPARC as an early holistic needs assessment tool in supportive and palliative care. Methods This study was conducted in South Yorkshire and North Derbyshire (UK). Ninety-nine consumer and self-help groups were identified from information in the public domain. Thirty-eight groups participated. Packs containing study information and self-complete postal questionnaires were distributed to groups, and they were asked to circulate these to their members. Completed questionnaires were returned in pre-paid envelopes to the research team. Results 135 questionnaires and feedback forms were returned. The majority of respondents found SPARC easy to understand (93% (120/129; 95% Confidence Interval 87% to 96%) and complete (94% (125/133; 95% CI: 88% to 97%). A minority, 12.2% (16/131), of respondents found questions on SPARC 'too sensitive'. Conclusions Overall, respondents considered SPARC an acceptable and relevant tool for clinical assessment of supportive and palliative-care needs. Whilst a small minority of people found SPARC difficult to understand (i.e. patients with cognitive impairments), most categories of service user found it relevant. Clinical studies are necessary to establish the clinical utility of SPARC. [ABSTRACT FROM AUTHOR]

Background: Entrustable professional activities (EPAs) are routine tasks considered essential to a professional practice. An EPA can serve as a performance-based outcome that a clinical supervisor would progressively entrust a learner to perform. Objective: Our aim was to identify, develop, and validate a set of EPAs for the palliative medicine discipline. Methods: The design was a sequential qualitative and quantitative mixed methods study. A working group was convened to develop a set of EPAs. Focus groups and surveys were used for validation purposes. Palliative medicine educators and content experts from across Canada participated in both the working group as well as the focus groups. Attendees of the 2014 Canadian Society of Palliative Care Physicians (CSPCP) annual conference completed surveys. A questionnaire was used to collect survey participant sociodemographic, clinical, and academic information along with ratings of the importance of the EPAs individually and collectively. Cronbach's alpha examined internal consistency of the set of EPAs. Results: Focus group participants strongly endorsed the 12 EPAs. Virtually all survey participants rated the individual EPAs as being 'fairly/very important' (range 94% to 100%). Of the participants, 97% agreed that residents able to perform the set of EPAs would be practicing palliative medicine and 87% indicated strong agreement that this collective set of EPAs captures activities that all palliative medicine physicians must be able to perform. A Cronbach's alpha of 0.841 confirmed good internal consistency. Conclusions: Near uniform agreement from a national group of palliative medicine physicians provides strong validation for the set of 12 EPAs. [ABSTRACT FROM AUTHOR]

Background The field of pediatric palliative care is hindered by the lack of a well-defined, reliable, and valid method for measuring the quality of end-of-life care. Methods The study purpose was to develop and test an instrument to measure mothers' perspectives on the quality of care received before, at the time of, and following a child's death. In Phase 1, key components of quality end-of-life care for children were synthesized through a comprehensive review of research literature. These key components were validated in Phase 2 and then extended through focus groups with bereaved parents. In Phase 3, items were developed to assess structures, processes, and outcomes of quality end-of-life care then tested for content and face validity with health professionals. Cognitive testing was conducted through interviews with bereaved parents. In Phase 4, bereaved mothers were recruited through 10 children's hospitals/hospices in Canada to complete the instrument, and psychometric testing was conducted. Results Following review of 67 manuscripts and 3 focus groups with 10 parents, 141 items were initially developed. The overall content validity index for these items was 0.84 as rated by 7 health professionals. Based on feedback from health professionals and cognitive testing with 6 parents, a 144-item instrument was finalized for further testing. In Phase 4, 128 mothers completed the instrument, 31 of whom completed it twice. Test-retest reliability, internal consistency, and construct validity were demonstrated for six subscales: Connect With Families, Involve Parents, Share Information With Parents, Share Information Among Health Professionals, Support Parents, and Provide Care at Death. Additional items with content validity were grouped in four domains: Support the Child, Support Siblings, Provide Bereavement Follow-up, and Structures of Care. Forty-eight items were deleted through psychometric testing, leaving a 95-item instrument. Conclusions There is good initial evidence for the reliability and validity of this new quality of end-of-life care instrument as a mechanism for evaluative feedback to health professionals, health systems, and policy makers to improve children's end-of-life care. [ABSTRACT FROM AUTHOR]

Aims (a) To explore parental experiences and needs during their child's end-of-life care at home; (b) to explore patient's characteristics and current provision of paediatric end-of-life care in the home care setting in Switzerland; and (c) to determine influencing system factors impacting end-of-life care at home. Background Parental experiences/needs and paediatric end-of-life care services in the home care setting are influenced by national healthcare policy, determinants of the family and the individual patient. In Switzerland, there is a lack of information about the provision of paediatric end-of-life care at home and related parent's experiences/needs. Design Sub-study of the nationwide multicenter study 'Paediatric End-of-Life CAre Needs in Switzerland' using a concurrent qualitative embedded mixed methods design. Methods Data will be collected from January-May 2014 through community care organizations and children's hospitals. The study includes approximately 40-50 families whose child (0-18 years) died in the years 2011-2012 due to a cardiological, neurological or oncological condition and spent at least 21 days at home during the last 4 weeks of life. Qualitative data will be collected through semi-structured interviews with parents and analysed by 'thematic analysis'. Quantitative data about patient's characteristics will be obtained from patient's medical charts and parental experiences/needs through the parental questionnaire. Appropriate descriptive and inference statistical methods will be used for data analysis. Discussion This study will provide comprehensive basic information about parental needs and patient characteristics for the provision of paediatric end-of-life care and may promote the development of family-centred paediatric end-of-life care services at home. Study registration: The PELICAN-study is registered in the database of Clinical Trial gov. Study ID-number: NCT 01983852. [ABSTRACT FROM AUTHOR]

The number of people living with advanced cancer and chronic disease has increased worldwide. Many of these patients could benefit from palliative care, focusing on optimising the quality of life of patients and their families facing problems resulting from lifethreatening diseases. However, fragmentation and discontinuity of palliative care services often result in suboptimal palliative care. In order to overcome these problems, models using an integrated care approach are increasingly advocated in palliative care services. Although several models and definitions of Integrated Palliative Care (IPC) have been developed, the effects of integrated care are still under-investigated. Knowledge of the key components that constitute successful palliative care integration is still lacking. This mixed methods study will examine the experiences of patients, family caregivers and professional caregivers in order to provide insight into the mechanisms that constitute successful palliative care integration. Methods/Design Prospective multiple embedded case study. Three to five integrated palliative care initiatives will be selected in Belgium, Germany, Hungary, The Netherlands and the United Kingdom. Data collection will involve Social Network Analysis (SNA), a patient diary, semi-structured interviews, and questionnaires: Palliative care Outcome Scale (POS), Canhelp Lite, Caregiver Reaction Assessment (CRA). Patients and family caregivers will be followed in 4 consecutive contact moments over 3 months. The diary will be kept weekly by patients. One focus group per initiative will be conducted with professional caregivers. Interviews and focus groups will be tape recorded, transcribed and qualitatively analysed using NVivo 10. SPSS Statistics 20 will be used for statistical analysis. Discussion This study will provide valuable knowledge about barriers, opportunities and good practices in palliative care integration in the selected initiatives across countries. This knowledge can be used in the benchmark of integrated palliative care initiatives across Europe. It will add to the scientific evidence for IPC services internationally and will contribute to improvements in the quality of care and the quality of living and dying of severely ill patients and their relatives in Europe. [ABSTRACT FROM AUTHOR]

Background: To respond better to population needs, in recent years Quebec has invested in improving the integration of services and care pathways. Nurses are on the front lines of these transformation processes, which require them to adopt new clinical practices. This updating of practices can be a source of both satisfaction and stress. The aim of this study was to gain a better understanding of the relationship between the transformation processes underlying services integration and nurses’ workplace well-being. Method: This study was based on a descriptive cross-sectional correlational design. The target population included all nurses working in four care pathways in a Quebec healthcare establishment: palliative oncology services, mental health services, autonomy support for the elderly, and chronic obstructive pulmonary disease. In all, 107 nurses took part in the study and completed a questionnaire sent to them. Hierarchical linear regression analyses were used to examine the relationship between level of integration, measured using the Development Model for Integrated Care; nurses’ perceptions of organizational change, measured on four dimensions (challenge, responsibility, threat, control); and nurses’ workplace well-being, measured on three dimensions (negative stress, positive stress, satisfaction), as defined by the Flexihealth model. Results: Nurses in the palliative oncology care pathway, which was at a more advanced level of integration, presented a lower negative stress level and a higher positive stress level than did nurses in other care pathways. Their mean satisfaction score was also higher. More advanced integration was associated with nurses’ feeling less threatened, as well as improved workplace well-being. The perception of threat appeared to be a significant mediating variable in the relationship between level of integration and well-being. Conclusion: The association observed between level of services integration and workplace well-being contributes to a better understanding of nurses’ experiences in such situations. These results provide new perspectives on interventions that could be implemented to remedy the potential negative consequences of these types of transformations. [ABSTRACT FROM AUTHOR]

Background: Since many patients spend most of the time at home at the end of life, this may affect the burden for family carers and constitute a risk factor for the patients’ hospitalisation. This study aimed to explore family carers’ burden in the final three months of the patient’s life, from the perspective of both carers and general practitioners (GPs), and to assess whether family burden, as defined by the GP, is associated with hospitalisation. Methods: A cross-sectional nationwide survey among GPs and family carers was performed. Participants were 194 GPs and 74 family carers of patients who died non-suddenly. Additionally, in-depth interviews were conducted with 18 family carers. For the quantitative analyses descriptive statistics, weighted Kappa and multivariate logistic regression analysis was performed. For the qualitative part thematic analysis was conducted. Results: The proportion of family carers experiencing a fairly heavy or severe burden increased significantly from 32% (second and third months before death) to 66% (one week before death). Most carers (95%) felt an emotional burden and 29% felt a physical burden in the final week. Three-quarters of carers did not perceive their burden as a problem because caring often felt rewarding. No significant association was found between the characteristics of family caregivers or professional care and the degree of family caregiver burden. Also, there was no significant evidence that patients of family carers for whom the GP assessed a fairly heavy to severe burden, were more likely to be hospitalised. Conclusions: The different overall assessment of family carers’ burden between GPs and family carers and the increasing emotional and physical burden of family carers towards the end constitute relevant information for GPs that will help them understand and anticipate carers’ personal needs. [ABSTRACT FROM AUTHOR]

Background End-of-life care needs are great in Africa due to the burden of disease. This study aimed to explore public preferences and priorities for end-of-life care in Nairobi, Kenya. Methods Population-based street survey of Kenyans aged ≥18; researchers approached every 10th person, alternating men and women. Structured interviews investigated quality vs. quantity of life, care priorities, preferences for information, decision-making, place of death (most and least favourite) and focus of care in a hypothetical scenario of serious illness with <1 year to live. Descriptive analysis examined variations. Results 201 individuals were interviewed (100 women) representing 17 tribes (n = 90 44.8%, Kikuyu). 56.7% (n = 114) said they would always like to be told if they had limited time left. The majority (n = 121, 61.4%) preferred quality of life over quantity i.e. extending life (n = 47, 23.9%). Keeping a positive attitude and ensuring relatives/friends were not worried were prioritised above having pain/discomfort relieved. The three most concerning problems were pain (45.8%), family burden (34.8%) and personal psychological distress (29.8%). Home was both the most (51.1% n = 98) and least (23.7% n = 44) preferred place of death. Conclusion This first population-based survey on preferences and priorities for end-of-life care in Africa revealed that psycho-social domains were of greatest importance to the public, but also identified variations that require further exploration. If citizens' preferences and priorities are to be met, the development of end-of-life care services to deliver preferences in Kenya should ensure an holistic model of palliative care responsive to individual preferences across care settings including at home. [ABSTRACT FROM AUTHOR]

Aims and objectives To report on the effectiveness of an eight-week palliative care programme in Hong Kong. Background A recent survey reported that the quality of palliative care services in Hong Kong ranked the 20th among 40 countries and it is far behind other Asian countries. There are disagreement and inadequate communication in clinical decision-making among patients, families and healthcare professionals, and that the nurses lack sufficient knowledge and skills in providing palliative care and advance care planning. Design A pretest post-test design and semi-structured interviews were adopted. Methods A total of 108 home care patients with life-limiting disease and their family caregivers in Hong Kong were recruited to complete a set of questionnaire including The Mc Gill Quality of Life Questionnaire for Hong Kong Chinese and the Family Satisfaction Scale before and after they attended an eight-week programme. The programme comprised the elements of symptom management, intensive communication on advance care planning and psychosocial intervention. Results Pearson's chi-square tests and Wilcoxon matched paired tests show a general trend that the patients' quality of life was improved after the programme. Their understanding and active participation in advance care planning was also improved. The hospital readmission rate and the days of hospital stays were significantly reduced. In qualitative interview, four major themes were identified that are as follows: improvement in the communication of treatment plans and after-death arrangements, symptom management, emotional support and suggested areas of improvement. Conclusion The study supports the benefit of implementing a palliative care programme to patients with life-limiting disease. Patients demonstrated improved understanding and changed behaviour as regards the preparation for death and dying after the eight-week programme. Relevance to clinical practice The programme could be replicated in other hospitals and infirmaries that offer home care services. [ABSTRACT FROM AUTHOR]

Background: Pharmacists are among the most accessible health care professionals in the community, yet are often not involved in community palliative care teams. Objective: We investigated community pharmacists' attitudes, beliefs, feelings, and knowledge about palliative care as a first step towards determining how best to facilitate the inclusion of community pharmacists on the palliative care team. Method: A cross-sectional descriptive survey design was used. Subjects: Community pharmacists around Australia were invited to participate; 250 completed surveys were returned. Measurements: A survey was constructed to measure pharmacists' knowledge and experience, emotions and beliefs about palliative care. Results: Pharmacists were generally positive about providing services and supports for palliative care patients, yet they also reported negative beliefs and emotions about palliative care. In addition, pharmacists had good knowledge of some aspects of palliative care, but misconceptions about other aspects. Pharmacists' beliefs and knowledge about palliative care predicted-and therefore underpinned-a positive attitude towards palliative care and the provision of services and supports for palliative care patients. Conclusion: The results provide evidence that pharmacists need training and support to facilitate their involvement in providing services and supports for palliative care patients, and highlight areas that training and support initiatives should focus on. [ABSTRACT FROM AUTHOR]

Background: Children's palliative care is a relatively new clinical specialty. Its nature is multi-dimensional and its delivery necessarily multi-professional. Numerous diverse public and not-for-profit organisations typically provide services and support. Because services are not centrally coordinated, they are provided in a manner that is inconsistent and incoherent. Since the first children's hospice opened in 1982, the epidemiology of life-limiting conditions has changed with more children living longer, and many requiring transfer to adult services. Very little is known about the number of children living within any given geographical locality, costs of care, or experiences of children with ongoing palliative care needs and their families. We integrated evidence, and undertook and used novel methodological epidemiological work to develop the first evidence-based and costed commissioning exemplar. Methods: Multi-method epidemiological and economic exemplar from a health and not-for-profit organisation perspective, to estimate numbers of children under 19 years with life-limiting conditions, cost current services, determine child/parent care preferences, and cost choice of end-of-life care at home. Results: The exemplar locality (North Wales) had important gaps in service provision and the clinical network. The estimated annual total cost of current children's palliative care was about £5.5 million; average annual care cost per child was £22,771 using 2007 prevalence estimates and £2,437- £11,045 using new 2012/13 population-based prevalence estimates. Using population-based prevalence, we estimate 2271 children with a life-limiting condition in the general exemplar population and around 501 children per year with ongoing palliative care needs in contact with hospital services. Around 24 children with a wide range of life-limiting conditions require end-of-life care per year. Choice of end-of-life care at home was requested, which is not currently universally available. We estimated a minimum (based on 1 week of end-of-life care) additional cost of £336,000 per year to provide end-of-life support at home. Were end-of-life care to span 4 weeks, the total annual additional costs increases to £536,500 (2010/11 prices). Conclusions: Findings make a significant contribution to population-based needs assessment and commissioning methodology in children's palliative care. Further work is needed to determine with greater precision which children in the total population require access to services and when. Half of children who died 2002-7 did not have conditions that met the globally used children's palliative care condition categories, which need revision in light of findings. [ABSTRACT FROM AUTHOR]

Objective: To describe Spanish nurses' preparedness to care for hospitalised terminally ill patients and how this translates into care delivery. Methods: An exploratory, sequential mixed methods study with two stages. Stage I used unstructured observations of 22 hospital nurses over 235 hours to understand their daily reality, followed by semi-structured interviews with 21 nurses to elicit their perspectives. Stage 2 was a regional survey (65% response rate) concerned with hospital nurses' opinions of caring for terminally ill patients and their perceived competence. Results: The nurses felt competent to provide physical but not emotional care for terminally ill patients. They reported that care could be improved, particularly through providing more emotional care. This coincided with an observed focus on physical care. The nurses reported a lack of support in caring for terminally ill patients and wanted more education on emotional issues and dealing with their own feelings. Conclusion: There is a need for an integrative approach in Spain that combines an educational programme with a supportive environment, focusing on developing nurses' competence to deliver emotional care and deal with their own feelings. Promoting a supportive environment might enable nurses to change their behaviour when caring for terminally ill patients and deal with patients' emotional as well as physical needs. [ABSTRACT FROM AUTHOR]

Background: The Patient Dignity Inventory (PDI) is a novel 25-item psychometric instrument, designed to identify multiple sources of distress (physical, functional, psychosocial, existential, and spiritual) commonly seen in patients who are terminally ill. It was also designed to help guide psychosocial clinicians in their work with patients. While its validity and reliability have been studied within the context of palliative care, its utility in clinical settings has not as yet been examined. Purpose: The purpose of this study was to determine how psychosocial oncology professionals would use the PDI with within their practice and what utility it might have across the broad spectrum of cancer. Methods: Between October 2008 and January 2009, psychosocial oncology clinicians from across Canada were invited to use the PDI to determine their impressions of this approach in identifying distress and informing their practice. Results: Ninety participants used the PDI and submitted a total of 429 feedback questionnaires detailing their experience with individual patients. In 76% of instances, the PDI revealed one or more previously unreported concerns; in 81% of instances, clinicians reported that the PDI facilitated their work. While it was used in a wide range of circumstances, clinicians were more inclined to apply the PDI to patients engaged in active treatment or palliation, rather than those in remission, having recently relapsed, or newly diagnosed. Besides its utility in identifying distress, the PDI enabled clinicians to provide more targeted therapeutic responses to areas of patient concern. Conclusions: While this study suggests various clinical applications of the PDI, it also provides an ideal forerunner for research that will directly engage patients living with cancer. [ABSTRACT FROM AUTHOR]

Background: Typically, dementia involves progressive cognitive and functional deterioration, leading to death. A palliative approach recognizes the inevitable health decline, focusing on quality of life. The approach is holistic, proactive, supports the client and the family, and can be provided by the client's usual care team. In the last months of life, distressing symptoms, support needs, and care transitions may escalate. This project trialed a strategy intended to support a consistent, high quality, palliative approach for people with dementia drawing close to death. The strategy was to implement two communities of practice, drawn primarily from service provider organizations across care sectors, supporting them to address practice change. Communities comprised practitioners and other health professionals with a passionate commitment to dementia palliative care and the capacity to drive practice enhancement within partnering organizations. Project aims were to document: (i) changes driven by the communities of practice; (ii) changes in staff/practitioner characteristics during the study (knowledge of a palliative approach and dementia; confidence delivering palliative care; views on death and dying, palliative care, and a palliative approach for dementia); (iii) outcomes from perspectives of family carers, care providers, and community of practice members; (iv) the extent to which changes enhanced practice and care continuity; and (v) barriers to and facilitators of successful community of practice implementation. Methods/design: This action research project was implemented over 14 months in 2010/11 in metropolitan Perth, Western Australia and regional Launceston, Tasmania. Each state based community of practice worked with the researchers to scope existing practice and its outcomes. The research team compiled a report of existing practice recommendations and resources. Findings of these two steps informed community of practice action plans and development of additional resources. Change implementation was recorded and explored in interviews, comparisons being made with practice recommendations. Changes in staff/practitioner characteristics were evaluated using survey data. Findings from semi structured interviews and survey administration established outcomes from perspectives of family carers, care providers, and community of practice members. Consideration of processes and outcomes, across the two state based settings, informed identification of barriers and facilitators. Community of practice reflections also informed study recommendations [ABSTRACT FROM AUTHOR]

Aims and objectives. Identify and compare spiritual caring practice by palliative care and acute care registered nurses (RNs), determine any correlation between nurses' spiritual perspective and their spiritual caring, and to investigate perceived barriers to spiritual caring. Background. Over the past decade there has been growing interest in spiritual caring in nursing. Professional nursing bodies have proposed spirituality and spiritual caring as an integral component of holistic nursing. Design. Cross sectional study. Methods. Palliative care RNs ( n = 42) from one community palliative care service and three hospices, and acute care RNs ( n = 50) from three major acute care hospitals all in metropolitan Sydney, Australia completed a research questionnaire. Two validated tools and a demographic survey were used to collect data. These tools measured spiritual perspectives including saliency of personal spirituality, spiritual views and engagement in spiritually-related activities; and spiritual practice including assessment, interventions and barriers to spiritual caring. Data were collected over a six-month period and interpreted with both descriptive and analytical statistics. Results. Significant differences were seen between the two RN groups. Palliative care RNs' spiritual caring practice was more advanced and their spiritual perspective stronger; this relationship was positive. Both RN groups identified 'insufficient time' as the most common barrier to spiritual caring practice; 'patient privacy' was also common for acute care RNs. Conclusions. Palliative care RNs' spiritual perspectives influenced their spiritual caring. These nurses were older and more career-advanced than the acute care RNs, which may explain the differences observed. Acute care RNs may benefit from additional support for their spiritual caring and to address perceived barriers. Relevance to clinical practice. The development of nurses' spiritual perspective early in their preparation for practice, and the articulation and documentation of spiritual caring may enhance their spiritual caring practice. Further research on barriers to spiritual caring in acute care nursing environments is recommended. [ABSTRACT FROM AUTHOR]