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Objectives: Integrated respiratory and palliative care services for people with advanced lung disease provide disease-orientated care until the end of life, alongside symptom management and discussions about future care. This study aimed to explore patient, caregiver and general practitioner perspectives of an integrated respiratory and palliative care service, to understand which components of the service were considered valued and effective. Methods: We approached patients, caregivers and general practitioners, to participate in semi-structured phone interviews. A grounded theory approach guided data collection and qualitative analysis. Results: Between July and December 2019, 10 patients, eight caregivers and five general practitioners completed interviews. The overarching theme was that of valuing integrated care – the provision of disease-orientated care along with palliative care. Four other major themes emerged: Valuing communication and engagement between patient, caregiver and healthcare professionals – who spoke of 'growing this plan together'; the delivery of person-centred care – where physicians 'actually listen and you are not treated like a number'; the reality of action plan use in serious illness – while many found plans 'certainly' do help, others described when they were simply 'too ill to do the action plan'; and finally, divergent preferences for discussions about future care – while some patients felt this subject was 'better left alone', caregivers consistently reported their preference was to 'make a plan.' Conclusion: Consumer perspectives highlight the service was valued for delivering personalised care with high communication standards. Similar services should appreciate the usefulness and limitations of action plan use in advanced lung disease, and be sensitive to potential diverging preferences of the patient and caregiver when discussing future care. What is known about the topic? Integrated respiratory and palliative care services for people with advanced lung disease may improve quality of life and decrease acute healthcare utilisation and cost. What does this paper add? This paper adds to our understanding of patients', caregivers' and general practitioners' perspectives of this integrated care model. Participants highly valued this integrated service for providing person-centred care. Participants outlined both the effectiveness and limitations of action plan use in advanced lung disease, and of diverging preferences between patients and caregivers for discussions about future care. What are the implications for practitioners? The integration of disease-orientated care along with the provision of palliative care is highly valued from a consumer perspective. [ABSTRACT FROM AUTHOR]

Background: Behavioral theories are often used to better understand and change health-promoting behaviors and develop evidencebased interventions. However, researchers often lack of knowledge on how to use these theories in palliative care and people confronted with serious illness. Clear examples or guidelines are needed. Aim: To describe how behavioral theories can be used to gain insight into critical factors of health-promoting behavior in seriously ill people, using a case example of “starting a conversation about palliative care with the physician” for people with incurable cancer. Methods: We used a health promotion approach. Step 1: We chose a theory. Step 2: We applied and adapted the selected theory by performing interviews with the target population which resulted in a new behavioral model. Step 3: We operationalized the factors of this model. An expert group checked content validity. We tested the questionnaire cognitively. Step 4: We conducted a survey study and performed logistic regression analyses to identify the most important factors. Results: Step 1: We selected the Theory of Planned Behavior. Step 2: This theory was applicable to the target behavior, but needed extending. Step 3: The final survey included 131 items. Step 4: Attitudinal factors were the most important factors associated with the target behavior of starting a conversation about palliative care with the physician. Conclusions: This paper describes a method applied to a specific example, offering guidance for researchers and practitioners interested in understanding and changing a target behavior and its factors in seriously ill people. [ABSTRACT FROM AUTHOR]

Understanding the temporal trends in the place of death among patients in receipt of home‐based palliative care can help direct health policies and planning of health resources. This paper aims to assess the temporal trends in place of death and its determinants over the past decade for patients receiving home‐based palliative care. This paper also examines the impact of early referral to home‐based palliative care services on patient's place of death. Survey data collected in a home‐based end‐of‐life care program in Toronto, Canada from 2005 to 2015 were analysed using a multivariate logistic model. The results suggest that the place of death for patients in receipt of home‐based palliative care has changed over time, with more patients dying at home over 2006–2015 when compared to 2005. Also, early referral to home‐based palliative care services may not increase a patient's likelihood of home death. Understanding the temporal shifts of place of death and the associated factors is essential for effective improvements in home‐based palliative care programs and the development of end‐of‐life care policies. [ABSTRACT FROM AUTHOR]

Background: Caring for a family member can be demanding, particularly when caregivers experience profound distress. Supportive interventions may help prevent mental and physical illness in the caregiver. General practice plays a key role by regularly engaging with patients and caregivers, thereby being able to identify their support needs, offer talk therapy and refer to care initiatives. Objective: This study aimed to develop and pilot-test the Caregiver Care Model to mitigate grief reactions among caregivers in general practice. Design: A participatory intervention development study. Methods: A prototype was developed in a workshop with healthcare professionals. The prototype was refined based on a pilot-test among 40 caregivers from 5 general practice clinics and a workshop with general practitioners. The data were obtained from workshops, feedback questionnaires completed by healthcare professionals, and interviews with caregivers and general practitioners. The analysis focused on model development and mechanisms of impact. Results: The prototype was refined by focusing the dialogue questionnaire, minimising the grief facilitation tools and expanding the target group. The prototype seemed to accommodate the needs among caregivers by acknowledging their situation. The final model includes up to seven caregiver consultations in general practice. A dialogue questionnaire filled in by the caregiver serves as a fixed starting point and preparation for the first consultation. If needed, talk therapy in general practice or referrals to other services are used. Conclusion: The model offers promising support for caregivers. Its flexible structure allows for customisation. The viability of the model should be further tested. [ABSTRACT FROM AUTHOR]

Introduction: Chronic Obstructive Pulmonary Disease (COPD) profoundly affects physical, psychological, and social aspects of life, yet these issues often remain unaddressed. Patient-Reported Outcomes Measures (PROM) have the potential to address these issues by promoting person-centered communication. However, their impact in COPD practice remains uncertain. This study aimed to investigate how patients with COPD perceive the usefulness of a new holistic PROM for general palliative care (PRO-Pall) before and during outpatient consultations. Methods: Semi-structured telephone interviews were conducted with patients diagnosed with moderate to very severe COPD, 2-5 days after consultation at a respiratory outpatient clinic in Denmark. Interviews were transcribed verbatim and analyzed inductively using qualitative content analysis. Results: Nine patients (five males; mean age: 66 years) participated in the study with four themes emerging: (1) Unlocking thoughts: Completing PRO-Pall stimulated patients’ self-reflection, which revealed previously overlooked COPD-related issues, particularly psychosocial challenges. (2) Unmasking concerns: Patients felt encouraged to be honest, rather than concealing their concerns. (3) Breaking the ice: PRO-Pall responses enabled direct questioning by healthcare professionals during consultations, initiating discussions on patients’ sensitive yet vital COPD-related matters. (4) Deepening the dialogue: Healthcare professionals’ targeted and attentive approach fostered more holistic and meaningful discussions, providing most patients with a deeper understanding of psychosocial issues affecting their well-being. Conclusion: Completing PRO-Pall prior to outpatient consultations prompted most patients with COPD to unveil previously unacknowledged psychosocial challenges. During consultations, addressing these challenges initiated open discussions on individual concerns, enhancing most patients’ understanding of the multifaceted burden of COPD. [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: Care home staff are key providers of palliative and end-of-life care. Yet, little is known about how care home characteristics can influence care leader's confidence in their ability to provide optimal palliative and end-of-life care. Aim: To understand the influence of care home registration type (nursing, residential or dual registered) and size on senior care leader's confidence to provide palliative and end-of-life care. Design: An explanatory sequential mixed methods study comprising an online cross-sectional survey (including the Palliative Care Self-Efficacy Scale) and qualitative individual interviews. Analysis of survey data used a multivariate logistic regression and qualitative interview data used Framework Analysis. A 'Following the Thread' method was undertaken for data integration. Setting/participants: UK care home senior care leaders, purposively sampled by registration type, size and geographical location. Results: The online survey (N = 107) results indicated that nursing home senior care leaders had higher confidence scores on the Palliative Care Self-Efficacy Scale than residential care home leaders (aOR: 3.85, 95% CI 1.20-12.31, p = 0.02). Care home size did not show effect when adjusting for registration type (medium - aOR 1.71, 95% CI 0.59–4.97, p = 0.33; large – aOR 0.65, 95% CI 0.18–2.30, p = 0.5). Interviews (n = 27) identified three themes that promote confidence, (1) 'feelings of preparedness' stemming from staff expertise and experience and care home infrastructure, (2) 'partnership working' with external services as a valued member of the multidisciplinary team, and (3) a shared language developed from end-of-life care guidance. Conclusion: Care home senior care leader's confidence is influenced by care home characteristics, particularly availability of on-site registered nurses and the infrastructure of large care homes. All care home leaders benefit from training, working with external, multidisciplinary teams and use of guidance. However, mechanisms to achieve this differed by care home type and size. Further exploration is needed on successful integration of palliative care services and interventions to enhance confidence in residential care homes. [ABSTRACT FROM AUTHOR]

The integration of assisted dying into end-of-life care is raising reflections on bereavement. Patients and families may be faced with a choice between this option and natural death assisted by palliative care; a choice that may affect grief. Therefore, this study describes and compares grief experiences of individuals who have lost a loved one by medical assistance in dying or natural death with palliative care. A mixed design was used. Sixty bereaved individuals completed two grief questionnaires. The qualitative component consisted of 16 individual semi-structured interviews. We found no statistically significant differences between medically assisted and natural deaths, and scores did not suggest grief complications. Qualitative results are nuanced: positive and negative imprints may influence grief in both contexts. Hastened and natural deaths are death circumstances that seem to generally help ease mourning. However, they can still, in interaction with other risk factors, produce difficult experiences for some family caregivers. [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]

This paper reports finding from a nested qualitative study designed to elicit the views and perceptions of those who participated in a randomised controlled feasibility trial testing a non-pharmacological intervention, Respiratory Distress Symptom Intervention (RDSI), for the management of the breathlessness-cough-fatigue symptom cluster in lung cancer. Semi-structured interviews were conducted with 11 lung cancer patients, three caregivers and seven researchers involved in recruitment, consent, RDSI training and delivery and participant follow-up. Thematic analysis identified key considerations including: the importance of informed consent emphasising commitment to completion of paperwork and raising awareness of potential sensitivities relating to content of questionnaires; ensuring screening for the presence of symptoms reflects the language used by patients; appreciation of the commitment required from participants to learn intervention techniques and embed them as part of everyday life; conduct of interviews with patients who decline to participate; and conduct of serial interviews with those receiving RDSI to further inform its routine implementation into clinical practice. This study will inform the development of a fully powered follow-on trial testing the hypothesis that RDSI plus usual care is superior to usual care alone in the effective management of this symptom cluster in lung cancer. [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]

Background: Burns are a global public health problem, accounting for around 300,000 deaths annually. Burns have significant consequences for patients, families, healthcare teams and systems. Evidence suggests that the integration of palliative care in burn intensive care units improves patients' comfort, decision-making processes and family care. Research is needed on how to optimise palliative care referrals. Aim: To identify triggers for palliative care referral in critically burned patients based on professionals' views, experiences and practices. Design: Qualitative study using in-depth interviews. Setting/participants: All five Burn Intensive Care Units reference centres across Portugal were invited; three participated. Inclusion criteria: Professionals with experience/working in these settings. A total of 15 professionals (12 nurses and 3 physicians) participated. Reflexive thematic analysis was performed. Results: Three main triggers for palliative care referral were identified: (i) Burn severity and extension, (ii) Co-morbidities and (iii) Multiorgan failure. Other triggers were also generated: (i) Rehabilitative palliative care related to patients' suffering and changes in body image, (ii) Family suffering and/or dysfunctional and complex family processes, (iii) Long stay in the burn intensive care unit and (iv) Uncontrolled pain. Conclusions: This study identifies triggers for palliative care in burn intensive care units based on professionals' views, clinical experiences and practices. The systematisation and use of triggers could help streamline referral pathways and strengthen the integration of palliative care in burn intensive care units. Research is needed on the use of these triggers in clinical practice to enhance decision-making processes, early and high-quality integrated palliative care and proportionate patient and family centred care. [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: The United Kingdom has led the world in the development of children's palliative care. Over the past two decades, the illness trajectories of children with life-limiting conditions have extended with new treatments and better home-based care. Future planning is a critically under-researched aspect of children's palliative care globally. This paper describes the development, implementation and evaluation of innovative child and parent-held palliative care planning resources. The resources were designed to facilitate parent and child thinking and engagement in future planning, and to determine care preferences and preferred locations of care for children with life-limiting conditions from diagnosis onwards. These resources fill a significant gap in palliative care planning before the end-of-life phase. Methods: Drawing on contemporaneous research on producing evidence-based children's health information, we collaborated with leading children's not-for-profit organisations, parents, children, and professionals. A set of resources (My Choices booklets) were developed for parents and children and evaluated using interviews (parents, children, professionals) and questionnaires (professionals) and an open web-based consultation. Results: Parents and children responded in three ways: Some used the booklets to produce detailed written plans with clear outcomes and ideas about how best to achieve desired outcomes. Others preferred to use the booklet to help them think about potential options. Remaining parents found it difficult to think about the future and felt there was no point because they perceived there to be no suitable local services. Professionals varied in confidence in their ability to engage with families to plan ahead and identified many challenges that prevented them from doing so. Few families shared their plans with professionals. Parents and children have far stronger preferences for home-care than professionals. Conclusion: The My Choices booklets were revised in light of findings, have been endorsed by Together for Short Lives, and are free to download in English and Welsh for use by parents and young people globally. More work needs to be done to support families who are not yet receptive to planning ahead. Professionals would benefit from more training in person-centred approaches to future planning and additional communications skills to increase confidence and ability to engage with families to deliver sensitive palliative care planning. [ABSTRACT FROM AUTHOR]

Background: Palliative care should be integrated early into the care trajectories of people with life threatening illness such as stroke. However published guidance focuses primarily on the end of life, and there is a gap in the evidence about how the palliative care needs of acute stroke patients and families should be addressed. Synthesising data across a programme of related studies, this paper presents an explanatory framework for the integration of palliative and acute stroke care. Methods: Data from a survey (n=191) of patient-reported palliative care needs and interviews (n=53) exploring experiences with patients and family members were explored in group interviews with 29 staff from 3 United Kingdom stroke services. A realist approach to theory building was used, constructed around the mechanisms that characterise integration, their impacts, and mediating, contextual influences. Results: The framework includes two cognitive mechanisms (the legitimacy of palliative care and individual capacity), and behavioural mechanisms (engaging with family; the timing of intervention; working with complexity; and the recognition of dying) through which staff integrate palliative and stroke care. A range of clinical (whether patients are being 'actively treated', and prognostic uncertainty) and service (leadership, specialty status and neurological focus) factors appear to influence how palliative care needs are attended to. Conclusions: Our framework is the first, empirical explanation of the integration of palliative and acute stroke care. The specification in the framework of factors that mediate integration can inform service development to improve the outcomes and experiences of patients and families [ABSTRACT FROM AUTHOR]

AIM: This study was conducted with the aim of assessing the needs and determining the care dimensions of the essential palliative care service package for the elderly with Alzheimer's disease. METHOD: The mixed exploratory study was conducted in three phases. The first phase of the study was conducted in the form of a qualitative study and a literature review. This qualitative research was done through in-depth and semi-structured interviews with 19 qualified caregivers (11 informal caregivers and 8 formal caregivers) The samples were selected using the purposive sampling method by referring to hospitals, nursing homes, and active branches of the Alzheimer's Association in some provinces. In the second phase, the dimensions of palliative care were codified, and in the third phase, the prioritization and the validation of the dimensions of palliative care were performed in the form of two Delphi rounds. RESULTS: Based on the results of the first phase of the study, the care dimensions of the service package were placed in eight categories based on National Consensus Project. In the second phase, the needs of Alzheimer's patients were arranged in the form of a questionnaire consisting of 8 parts, with 180 indicators. Then, in the third phase, the dimensions of the palliative care essential package were designed with 74 items in the form of 4 dimensions. CONCLUSION: The dimensions of the essential service package of palliative care included a series of interventions as well as physical, psychological, cognitive, and spiritual support. [ABSTRACT FROM AUTHOR]

Aims and Objectives: To explore the longitudinal experiences using an application named remote home care for remote palliative care among patients with cancer living at home. Background: Introducing welfare technology in home‐based care for patients with cancer in the palliative phase is internationally suggested as a measure to remotely support palliative care needs. However, little is known about the experiences of patients utilising welfare technology applications to receive home‐based care from healthcare professionals in a community care context. Although living with cancer in the palliative phase often presents rapidly changing ailments, emotions and challenges with patients' needs changing accordingly, no studies exploring the longitudinal experiences of patients were found. Design: A qualitative study with a longitudinal, exploratory design. Methods: Data were collected through individual interviews with 11 patients over 16 weeks. The data were analysed using qualitative content analysis. The COREQ checklist guided the reporting of the study. Results: Three themes were identified: (1) potential to facilitate self‐governance of life‐limiting illness in daily life, (2) need for interpersonal relationships and connections, and (3) experiences of increased responsibility and unclear utility of the Remote Home Care. Conclusion: The results showed that remote home care facilitated patients' daily routines, symptom control and improved illness‐management at home. Interpersonal relationships with healthcare professionals were considered pivotal for satisfactory follow‐up. Infrastructural glitches regarding data access, information sharing and lack of continuous adjustments of the application represented major challenges, with the potential to impose a burden on patients with cancer in the palliative phase. Relevance to Clinical Practice: By exploring the experiences of patients in palliative care over time as the disease progresses, this study provides constructive insights for the design and development of welfare technology applications and optimal care strategies. Patient or Public Contribution: The remote home care was developed by interdisciplinary healthcare professionals. [ABSTRACT FROM AUTHOR]

Portugal has been identified as the European country with the most rapid evolution of Pediatric Palliative Care provision, where approximately 7800 children have life-limiting conditions. This is a highly complex experience not only for the children and their parental caregivers, but also for their healthy siblings and grandparents. The present descriptive-exploratory study seeks to contribute to the understanding of the psychological experience of life-limiting conditions in grandparents. A total of 19 families, consisting of 15 grandmothers and 4 grandfathers, completed a sociodemographic and clinical data sheet and a semi-structured interview was conducted in which they shared their testimony. The results of the thematic analysis highlighted an integrated view on 10 important dimensions in the grandparental experience and promoted creative responses by means of their own perspective. However, it has some limitations, such as the small sample size and the data collection procedure via telephone. The results contribute to the design of specific intervention methodologies in an ecosystemic approach and suggest further research to explore more protective factors and communication with health professionals. For psychological intervention, it is suggested considering the identification of individual and family resources that contribute to the activation of key processes in resilience and posttraumatic growth. [ABSTRACT FROM AUTHOR]

Background: Nurturing effective physician-patient relationships is essential to the provision of patient-centred care. Palliative care physicians may apply boundary-crossings or breaches in professional standards to nurture effective physician-patient relationships. Being highly individualized and shaped by the physician's narratives, clinical experience, and contextual considerations, boundary-crossings are susceptible to ethical and professional violations. To better appreciate this concept, we employ the Ring Theory of Personhood (RToP) to map the effects of boundary-crossings on the physician's belief systems. Methods: As part of the Tool Design SEBA methodology, a Systematic Evidence-Based Approach (SEBA) guided systematic scoping review was employed to guide the design of a semi-structured interview questionnaire with palliative care physicians. The transcripts were simultaneously content and thematically analysed. The themes and categories identified were combined using the Jigsaw Perspective and the resulting domains formed the basis for the discussion. Results: The domains identified from the 12 semi-structured interviews were catalysts and boundary-crossings. Boundary-crossings attempt to address threats to a physician's belief systems (catalysts) and are highly individualized. Employ of boundary-crossings depend on the physician's sensitivity to these 'catalysts', their judgement and willingness to act, and their ability to balance various considerations and reflect on their actions and their ramifications. These experiences reshape belief systems, understandings of boundary-crossings and may influence decision-making and practice, underscoring the potential for greater professional breaches when unchecked. Conclusion: Underlining its longitudinal effects, the Krishna Model underscores the importance of longitudinal support, assessment and oversight of palliative care physicians, and lays the foundation for a RToP-based tool to be employed within portfolios. [ABSTRACT FROM AUTHOR]

In Israel, as in other countries, the emotional and physical needs of minority populations receiving palliative care, are largely unknown. The ultra-Orthodox Jewish sector is one such minority population. This study's goal was to identify perceived social support, desire to receive information about illness and prognosis, and willingness to disclose information to others. Various measures assessing perception of social support, psychological symptoms and information disclosure were completed. Fifty-one women consented to participate; approximately 50% of participants had disclosed the diagnosis to their rabbi or a friend, in addition to their spouse. Almost all of the participants would want to be told if their condition were worsening (86.3%), yet only 17.6% reported that their doctor had discussed future care options if their health situation were to worsen. Overall, participants felt that the level of support they received was high and reported low levels of mental distress. This is the first known study regarding perceptions and needs of ultra-Orthodox Jewish women with advanced-stage cancer. Both diagnosis disclosure and palliative care options should be addressed and discussed with these patients so they may make important end-of-life decisions. [ABSTRACT FROM AUTHOR]

Background: Discrepancies in symptom assessment between providers and patients are reported in cancer care, and the use of patient-reported outcome measures (PROMs) has been recommended for patients receiving palliative care. However, the status of the routine use of PROMs in palliative care in Japan is presently unclear. Therefore, this study aimed to clarify this complex question. To this end, we administered a questionnaire survey either online or via telephone interviews (questionnaire: sent to 427 designated cancer hospitals, 423 palliative care units [PCUs], and 197 home hospices; interviews: conducted at 13 designated cancer hospitals, nine PCUs, and two home hospices). Results: Questionnaires were returned from 458 institutions (44% response rate). We found that 35 palliative care teams (PCTs, 15%), 66 outpatient palliative care services (29%), 24 PCUs (11%) and one (5%) home hospice routinely used PROMs. The most frequently implemented instrument was the Comprehensive Care Needs Survey questionnaire. Moreover, 99 institutions (92%) that routinely used PROMs responded these instruments as useful in relieving patients' symptoms; and moreover, the response rate in regard to usefulness in symptom management was higher than that of institutions that did not routinely use PROMs (p = 0.002); > 50% of the institutions that routinely used PROMs stated that use of these instruments was influenced by disease progression and patients' cognitive function. Moreover, 24 institutions agreed to be interviewed, and interviews demonstrated the benefits of and the barriers to the implementation of PROMs. Effective methods used in the implementation of PROMs were introduced as efforts to reduce the burden placed on patients and to promote healthcare providers' education in the use of PROMs. Conclusions: This survey quantified the status of the routine use of PROMs within specialized palliative care in Japan, revealed barriers to wider PROM use, and identified needed innovations. Only 108 institutions (24%) routinely used PROMs within specialized palliative care. Based on the results of the study, it is necessary to carefully consider the usefulness of PROs in clinical palliative care, perform careful selection of PROMs according to the patient's condition, and evaluate how specifically to introduce and operate PROMs. [ABSTRACT FROM AUTHOR]

Background: Early integration of oncology and patient-centered palliative care is the recommended clinical practice model for patients with advanced cancer. General and specific communication skills are necessary to achieve integrated patient-centered care, but require organized training to be adequately mastered. Challenges and barriers on several levels, i.e. organizational, professional and individual may, however, hamper implementation. The development, implementation, and evaluation of such an educational program focusing on communication skills contain many steps, considerations and lessons learned, which are described in this article. Methods: A multi-professional faculty developed, implemented, and evaluated an educational program through a 5-step approach. The program was part of a Norwegian cluster-randomized controlled trial aiming to test the effect of early integration of oncology and palliative care for patients with advanced cancer. Results: The result is the PALLiON educational program; a multi-faceted, evidence-based, and learner-centered program with a specific focus on physicians' communication skills. Four modules were developed: lectures, discussion groups, skills training, and coaching. These were implemented at the six intervention hospitals using different teaching strategies. Evaluation in a subgroup of participants showed a positive appraisal of the group discussions and skills training. Conclusion:We present our experiences and reflections regarding implementation and lessons learned, which should be considered in future developments and implementations; (1) Include experienced faculty with various backgrounds, (2) Be both evidence-based and learner-centered, (3) Choose teaching strategies wisely, (4) Expect resistance and skepticism, (5) Team up with management and gatekeepers, (6) Expect time to fly, and (7) Plan thorough assessment of the evaluation and effect. Trial registration: ClinicalTrials.gov identifier: NCT03088202. [ABSTRACT FROM AUTHOR]

Over the last decade, the importance of Advanced Care Planning has been recognized in Japan. However, it is still difficult for healthcare providers and patients to verbalize how they want to spend the last days of their lives and what unfinished business they have left to accomplish. This study aimed to clarify how nurses intervened to assist patients with cancer at the end of life to express their thoughts and concerns. Twenty‐four nurses were interviewed regarding how they intervened for patients' thoughts and concerns, and data were analyzed qualitatively using a modified grounded theory approach. A 25‐item scale was selected, and the questionnaires, which included the scale, were distributed to nurses in general wards, palliative care units, and home visiting nurse services. A total of 1864 responses were analyzed. Factor analysis and structural equation model analysis were used, and three factors were identified: "assessment and intervention," "basic care," and "knowledge and communication," which led to the formulation of an intervention structure model for uncovering thoughts and concerns. These results indicate the importance of basic care and communication during interventions for patients. [ABSTRACT FROM AUTHOR]

Background: Patient-reported outcome measures have the potential to improve outcomes, quality, and effectiveness of care. Digital use of patient-reported outcome measures could be an option to foster implementation in palliative care. The Palli-MONITOR study focused on developing and testing an electronic patient-reported outcome measure in specialised palliative home care. As part of this study, we examined setting-specific challenges for the development of the measure. Aim: We aimed to identify and explore challenges for the development of electronic patient-reported outcome measures as standardised assessment in specialised palliative home care. Design: Qualitative approach with semi-structured interviews and focus groups. Data were thematically analysed using the framework method. Setting/Participants: Patients and professionals from five German palliative home care teams. Results: Patients described potential problems in using electronic questionnaires due to their deteriorating health. Answering the electronic questionnaire encouraged patients to reflect on their current palliative situation, which was partly perceived as burdensome. Identified concerns and questions regarding the future roll-out of electronic patient-reported outcome measurement addressed the process of receiving and using the provided information in clinical care routine. Challenging factors on organisational and structural level were the potential undermining of the established 24-h emergency call system and the potential use for patients. Conclusions: Our results provide a multifaceted picture of challenges developing electronic systems for patient-reported outcome measurement in palliative home care on the individual and organisational level. The study underpins the benefit of stakeholder involvement creating digital health innovations and emphasises the importance to therefore mind setting specific culture. [ABSTRACT FROM AUTHOR]

Aim: To develop and validate a questionnaire on knowledge, attitude, behaviour and care preference of family members of Chinese older adults related to palliative care. Design: A descriptive study design and STROBE checklist were applied in this research. Methods: The theoretical framework of the questionnaire was knowledge–attitude–behaviour model. An additional dimension of palliative care preference of family members was set up in the questionnaire. Items were generated from a rapid review of international literature and interviews with 61 family members of the older adults living either in an aged care service organization or the community. The content validity was examined by five experts. A preliminary questionnaire with 69 items was then set up, and its psychometric property was assessed. Results: A final version of questionnaire with 42 items under four dimensions was constructed. The content validity index of the overall questionnaire was 0.93 and of each item ranged 0.80–1.00. The factor loading of all items was higher than 0.50 as per exploratory and confirmatory factor analysis; the average variance extracted for each dimension was higher than 0.50; the composite reliability was higher than 0.90; and the absolute value of the correlation coefficient of each dimension was <0.50 and less than the square root of the average variance extracted. The Cronbach's alpha value and the split‐half reliability value of the overall questionnaire were 0.93 and 0.97, respectively. Conclusions: This questionnaire has good validity and reliability, but needs further testing in multi‐centered settings. [ABSTRACT FROM AUTHOR]

Workplace-based interprofessional education (IPE) offers opportunities for pre-registration students to interact with patients in authentic settings. Senior dietetic, medical, nursing, physiotherapy and radiation therapy students took part in a workplace IPE initiative on cancer and palliative care informed by experiential learning theory and run by clinical tutors. Research was undertaken to gauge students and tutors' experiences of the initiative. The mixed methods approach included: Pre and post-administration of the University of West England Interprofessional questionnaire 'Communication and Teamwork Scale, 'Interprofessional Learning Scale,' 'Interprofessional Interaction Scale.' Two questions were added relating to cancer and palliative care. Separate focus group interviews were held with students and tutors. There was a positive shift in the Communication and Teamwork scale based on students' pre and post questionnaires, but no change in the other two scales. Analysis of student and tutor focus group data showed that both affirmed the IPE initiative for a range of reasons. A brief experiential, theory-informed IPE initiative with a focus on cancer and palliative care was well received by both students and clinical tutors. The mixed method approach highlighted some discrepancies between quantitative and qualitative results but when synthesized were explicable, demonstrating the value of using a mixed methods approach to research. [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]

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: Day care services support older people living with long-term conditions (LTC's). Aims: The aims of the study were to determine outcomes in terms of loneliness and health-related quality of life for older people with LTCs attending day care services in the United Kingdom. Methods: Newly referred older people with LTCs to day care services in North West of England and Wales were invited to participate. The EQ-5D-3L and De Jong Loneliness questionnaires were completed at recruitment, 6 and 12 weeks. Results: Ninty-four older people (64% female), age range 65–99 years; mean number of LTCs 4.3 (range: 2–9) were recruited. About 52% lived alone and 36% lived in one of the 20% most deprived local authorities in England and Wales. Outcomes over 12 weeks were comparable for paid, blended, and for volunteer-led services. Conclusion: Following the Covid-19 pandemic, it is increasingly urgent to support older people with LTCs who may have lost physical and cognitive function during lockdown and to support their recovery. Our study suggests that volunteers can provide services and complement the care provided by paid staff, freeing up resources and enabling increasing numbers of older people to be supported. [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]

Objective: Advance care planning (ACP) allows individuals to express their preferences for medical treatment in the event that they become incapable of making their own decisions. This study assessed the efficacy of a conversation game intervention for increasing South Asian Indian Americans' (SAIAs') engagement in ACP behaviors as well as the game's acceptability and cultural appropriateness among SAIAs. Design: Eligible community-dwelling SAIAs were recruited at SAIA cultural events held in central Texas during the summer of 2016. Pregame questionnaires included demographics and the 55-item ACP Engagement Survey. Played in groups of 3–5, the game consists of 17 open-ended questions that prompt discussions of end-of-life issues. After each game session, focus groups and questionnaires were used to examine the game's cultural appropriateness and self-rated conversation quality. Postintervention responses on the ACP Engagement Survey and rates of participation in ACP behaviors were collected after 3 months through phone interviews or online surveys. Data were analyzed using descriptive statistics, frequencies, and paired t-tests comparing pre/post averages at a.05 significance level. Results: Of the 47 participants, 64% were female, 62% had graduate degrees, 92% had lived in the U.S. for >10 years, 87% were first-generation immigrants, and 74% had no advance directive prior to the game. At the 3-month follow-up, 58% of participants had completed at least one ACP behavior, 42% had discussed end-of-life issues with loved ones, 15% did so with their healthcare providers, and 18% had created an advanced directive. ACP Engagement Survey scores increased significantly on all four of the process subscales by 3 months postgame. Conclusion: SAIA individuals who played a conversation game had a relatively high rate of performing ACP behaviors 3 months after the intervention. These findings suggest that conversation games may be useful tools for motivating people from minority communities to engage in ACP behaviors. [ABSTRACT FROM AUTHOR]

This article applies a micro-meso-macro analytical framework to understand clinicians' experiences and perspectives of using patient-reported outcome and experience measures (PROMs and PREMs) in routine hospital-based palliative care. We structure our discussion through qualitative analysis of a design and implementation project for using an electronic tablet-based tool among hospital-based palliative clinicians to assess patients' and their family caregivers' quality of life concerns and experiences of care. Our analysis identified three categories of practice tensions shaping clinicians' use of PROMs and PREMs in routine care: tensions surrounding implementation, tensions in standardization and quantification, and tensions that arose from scope of practice concerns. Our findings highlight that clinicians necessarily work within the confluence of multiple system priorities, that navigating these priorities can result in irreducible practice tensions, and that awareness of these tensions is a critical consideration when integrating PROMs and PREMs into routine practice. [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]

Background: Early palliative care improves quality of life and satisfaction with care and is increasingly endorsed for patients with advanced cancer. However, little is known about the experience of receiving early palliative care from a patient and caregiver perspective. Aim: The aim of this qualitative study was to determine, from a participant perspective, the experience of receiving early palliative care and elements of that care. Design: Qualitative grounded theory study using individual interviews. Setting/participants: The study took place at a comprehensive cancer centre. Patients (n = 26) and caregivers (n = 14) from the intervention arm of a cluster-randomised controlled trial of early palliative care versus standard oncology care participated in qualitative interviews. Participants were asked to comment on their quality of life, the quality of care provided over the intervention period and their experiences with the palliative care team. Results: Participants described feeling supported and guided in their illness experience and in their navigation of the healthcare system. Specific elements of early palliative care included prompt, personalised symptom management; holistic support for patients and caregivers; guidance in decision-making; and preparation for the future. Patients with symptoms particularly valued prompt attention to their physical concerns, while those without symptoms valued other elements of care. Although three patients were ambivalent about their current need for palliative care, no distress was reported as a consequence of the intervention. Conclusion: The elements of care described by participants may be used to develop, support and refine models of early palliative care for patients with cancer. [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]

This study explored low-income older adults' willingness to (i) complete advance directives, legal documents, whereby an individual designates decision-makers in the event that they cannot make their own decisions about end-of-life treatment preferences, and (ii) the role of social support and other predictors that impact their willingness. This study was conducted as part of a larger study exploring behaviours of advance care planning among low-income older adults. Out of a total of 255 participants from the original study, this study included 204 participants who did not complete an advance directive for data analysis. A cross-sectional study using probability random sampling stratified by ethnicity was used. Older adults residing in two supportive housing facilities or who were members of a senior centre in San Diego, California, USA, were interviewed in person between December 2010 and April 2011. Hierarchical logistic regression analysis revealed that the majority of participants (72.1%) were willing to complete advance directives and the factors significantly predicting willingness to complete included self-rated health, attitudes towards advance decision-making and social support. Participants with a poorer health status ( OR = 1.43, 95% CI = 1.07-1.90) were more willing to complete advance directives. Conversely, participants with higher positive attitudes ( OR = 1.18, 95% CI = 1.00-1.39) and greater social support ( OR = 1.07, 95% CI = 1.00-1.15) were also more willing to complete advance directives. The findings suggest the importance of ongoing support from healthcare professionals in end-of-life care planning. Healthcare professionals can be a source of support assisting older adults in planning end-of-life care. Initiating ongoing communication regarding personal value and preference for end-of-life care, providing relevant information and evaluating willingness to complete as well as assisting in the actual completion of advance directives will be necessary. [ABSTRACT FROM AUTHOR]

Background: The ICECAP-Supportive Care Measure is a self-complete questionnaire developed to aid economic evaluation of supportive care interventions. Aim: To determine the feasibility of completing ICECAP–Supportive Care Measure alongside EQ-5D-5L and ICECAP-A (generic measures used in economic evaluation) among patients receiving hospice care, close persons and healthcare professionals. Design: Participants were asked to ‘think aloud’ while completing ICECAP-Supportive Care Measure and two other generic measures used in economic evaluation, EQ-5D-5L and ICECAP-A, and then participate in a semi-structured interview. From verbatim transcripts, five raters identified the frequency of errors in comprehension, retrieval, judgement and response. Qualitative data were analysed using constant comparison. Setting/participants: Eligible patients were identified from one UK hospice by a research nurse. Close persons and healthcare professionals were identified by the patient. In all, 72 semi-structured interviews were conducted with patients (n = 33), close persons (n = 22) and healthcare professionals (n = 17). Results: Patients and close persons reported that the ICECAP-Supportive Care Measure was most appropriate for measuring their quality of life. It appeared more meaningful, easier to complete and had fewest errors (3.9% among patients, 4.5% among close persons) compared to EQ-5D-5L (9.7% among patients, 5.5% among close persons). Healthcare professionals acknowledged the value of the ICECAP-Supportive Care Measure but had fewer errors in completing the EQ-5D-5L (3.5% versus 6.7%). They found it easier to complete because it focuses on observable health states. Conclusions: The ICECAP-Supportive Care Measure is feasible to use and perceived as appropriate for evaluating palliative care interventions. Healthcare professionals with limited knowledge of the patient who act as proxy completers may find the measure difficult to complete. [ABSTRACT FROM AUTHOR]

Background: The Integrated Palliative care Outcome Scale is a newly developed advancement of the Palliative care Outcome Scale. It assesses patient-reported symptoms and other concerns. Cognitive interviewing is recommended for questionnaire refinement but not adopted widely in palliative care research. Aim: To explore German- and English-speaking patients’ views on the Integrated Palliative care Outcome Scale with a focus on comprehensibility and acceptability, and subsequently refine the questionnaire. Methods: Bi-national (United Kingdom/Germany) cognitive interview study using ‘think aloud’ and verbal probing techniques. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis and pre-defined categories. Results from both countries were collated and discussed. The Integrated Palliative care Outcome Scale was then refined by consensus. Setting/participants: Purposely sampled patients from four palliative care teams in palliative care units, general hospital wards and in the community. Results: A total of 15 German and 10 UK interviews were conducted. Overall, comprehension and acceptability of the Integrated Palliative care Outcome Scale were good. Identified difficulties comprised the following: (1) comprehension problems with specific terms (e.g. ‘mouth problems’) and length of answer options; (2) judgement difficulties, for example, due to the 3-day recall for questions; and (3) layout problems. Combining the results from both countries (e.g. regarding ‘felt good about yourself’) and discussing them from both languages’ perspectives resulted in wider consideration of the items’ meaning, enabling more detailed refinement. Conclusion: Cognitive interviewing proved valuable to increase face and content validity of the questionnaire. The concurrent approach in two languages – to our knowledge the first such approach in palliative care – benefited the refinement. Psychometric validation of the refined Integrated Palliative care Outcome Scale is now underway. [ABSTRACT FROM AUTHOR]

Background: Breathlessness is the most common and intrusive symptom of advanced non-malignant respiratory and cardiac conditions. The Breathlessness Intervention Service (BIS) is a multi-disciplinary complex intervention, theoretically underpinned by a palliative care approach, utilising evidence-based non-pharmacological and pharmacological interventions to support patients with advanced disease in managing their breathlessness. Having published the effectiveness and cost effectiveness of BIS for patients with advanced cancer and their carers, we sought to establish its effectiveness, and cost effectiveness, in advanced non-malignant conditions.Methods: This was a single-centre Phase III fast-track single-blind mixed method RCT of BIS versus standard care for breathless patients with non-malignant conditions and their carers. Randomisation was to one of two groups (randomly permuted blocks). Eighty-seven patients referred to BIS were randomised (intervention arm n = 44; control arm n = 43 received BIS after four-week wait); 79 (91 %) completed to key outcome measurement. The primary outcome measure was 0-10 numeric rating scale for patient distress due to breathlessness at four weeks. Secondary outcome measures were Chronic Respiratory Questionnaire, Hospital Anxiety and Depression Scale, Client Service Receipt Inventory, EQ-5D and topic-guided interviews.Results: Qualitative analyses showed the positive impact of BIS on patients with non-malignant conditions and their carers; quantitative analyses showed a non-significant greater reduction in the primary outcome ('distress due to breathlessness'), when compared to standard care, of -0.24 (95 % CI: -1.30, 0.82). BIS resulted in extra mean costs of £799, reducing to £100 when outliers were excluded; neither difference was statistically significant. The quantitative findings contrasted with those previously reported for patients with cancer and their carers, which showed BIS to be both clinically and cost effective. For patients with non-malignant conditions there was a notable trend of improvement over both trial arms to the key measurement point; participants may have experienced a therapeutic effect from the research interviews, diluting the intervention's impact.Conclusions: BIS had a statistically non-significant effect for patients with non-malignant conditions, and slightly increased service costs, but had a qualitatively positive impact consistent with findings for advanced cancer. Trials of palliative care interventions should consider multiple, mixed method, primary outcomes and ensure that protocols limit potential contaminating therapeutic effects in study designs.Trial Registration: Current Controlled Trials ISRCTN04119516 (December 2008); ClinicalTrials.gov NCT00678405 (May 2008). [ABSTRACT FROM AUTHOR]

Background: Systematic assessment of family caregivers’ support needs and integrating these into service planning according to evidence-based research are vital to improving caregivers’ outcomes and their capacity to provide care at end of life. Aim: To describe the experience with and feedback of nurses on implementing a systematic assessment of support needs with family caregivers in home-based palliative care, using the Carer Support Needs Assessment Tool. Methods: This study was conducted during 2012–2014 in Silver Chain Hospice Care Service in Western Australia. This article reports on one part of a three-part evaluation of a stepped wedge cluster trial. Forty-four nurses who trialled the intervention with 233 family caregivers gave their feedback via surveys with closed- and open-ended questions (70.5% response rate). Analyses of quantitative and qualitative data were undertaken. Results: The feedback of nurses was overwhelmingly positive in terms of perceived benefits in comparison to standard practice both from the family caregiver and service provider perspectives. Using the Carer Support Needs Assessment Tool was described by nurses as providing guidance, focus and structure to facilitate discussion with family caregivers and as identifying needs and service responses that would not otherwise have been undertaken in a timely manner. Conclusion: Our study has successfully addressed the call for alternatives to the professional assessment paradigm using the Carer Support Needs Assessment Tool approach as a caregiver-led intervention facilitated by health professionals. Integrating the Carer Support Needs Assessment Tool in existing practice is fundamental to achieving better caregiver outcomes. [ABSTRACT FROM AUTHOR]

In Canada, health system restructuring has led to a greater focus on home-based palliative care as an alternative to institutionalised palliative care. However, little is known about the effect of this change on end-of-life care costs and the extent to which the financial burden of care has shifted from the acute care public sector to families. The purpose of this study was to assess the societal costs of end-of-life care associated with two places of death (hospital and home) using a prospective cohort design in a home-based palliative care programme. Societal cost includes all costs incurred during the course of palliative care irrespective of payer (e.g. health system, out-of-pocket, informal care-giving costs, etc.). Primary caregivers of terminal cancer patients were recruited from the Temmy Latner Centre for Palliative Care in Toronto, Canada. Demographic, service utilisation, care-giving time, health and functional status, and death data were collected by telephone interviews with primary caregivers over the course of patients' palliative trajectory. Logistic regression was conducted to model an individual's propensity for home death. Total societal costs of end-of-life care and component costs were compared between home and hospital death using propensity score stratification. Costs were presented in 2012 Canadian dollars ($1.00CDN = $1.00USD). The estimated total societal cost of end-of-life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference ( P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end-of-life care, resulted in changes in the distribution of costs borne by different stakeholders. [ABSTRACT FROM AUTHOR]

Background: Patients with advanced cancer often have to make difficult decisions, such as how much to spend on moderately life-extending treatments. This and other end-of-life decisions are also influenced by their informal caregivers. Understanding the relative value that patients and their caregivers place on various aspects of end-of-life care can help clinicians tailor treatments to best meet the preferences of their patients. Aim: To quantify willingness to pay of patients with advanced cancer and their caregivers to extend the patients’ life by 1 year and to compare this result to their willingness to pay for other end-of-life improvements. Design: Cross-sectional survey using a discrete choice experiment. Participants: A total of 211 patients with stage IV cancer and their informal caregivers. Results: The willingness to pay of patients to extend their life by 1 year (S$18,570; 95% confidence interval: S$6687–S$30,542) was not statistically different from their willingness to pay to avoid severe pain (S$22,199; S$11,648–S$32,450), to die at home (S$31,256; S$21,249–S$41,391), not be a burden on family and friends (S$4051; −S$3543 to S$11,568), or to receive a high-quality health-care experience (S$16,191; S$9266–S$23,037). Consistent with our hypothesis, caregivers had a greater willingness to pay than patients to extend life (S$61,368; S$37,030–S$86,210) and for most other end-of-life improvements. Conclusion: Results highlight the importance of pain management, supporting home deaths, and addressing other end-of-life concerns, in addition to efforts to extend life. Differences in willingness to pay of patients and caregivers suggest the need for eliciting patient preferences during treatment decision making as opposed to relying on caregiver input. [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]

Objective In Europe, volunteers have an important role in the delivery of palliative care. As part of the EU co-funded Europall project, 4 aspects of volunteering in palliative care were studied for 7 European countries (Belgium, England, France, Germany, the Netherlands, Poland, and Spain). These included (1) involvement of volunteers in palliative care, (2) organization of palliative care volunteering, (3) legal regulations concerning volunteering, and (4) education and training of palliative care volunteering. Design/Setting/Methods A literature search combined with an interview study. Information from the scientific literature, and country-specific policy documents were obtained and completed, along with data of consecutive semi-structured interviews with experts in the field of palliative care in the participating countries. Results In all countries, volunteers appeared to be involved in palliative care, yet their involvement across health care settings differed per country. England, for example, has the highest number of volunteers whereas Spain has the lowest number. Volunteering is embedded in law and regulations in all participating countries except for England and the Netherlands. In all participating countries, training programs are available and volunteers are organized, both on a national and a regional level. Conclusion This study provides a descriptive overview of volunteer work in palliative care in 7 European countries, with a focus on the organizational aspects. Further research should concentrate on the roles and responsibilities of volunteers in the care for the terminally ill in different European health systems. [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]

The article presents a population-based study that examined the relationship between the general end-of-life goals of Dutch older people and their specific life-sustaining treatment preferences. The study found that 13.5% of the patients preferred a longer life, irrespective of health problems, and 86.5% of them wanted a shorter life. It indicated that in the cancer scenario, the relationship between a desire for a treatment and a preference for a longer life ranged from 50% to 76%.