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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]

Objective: This study aimed to achieve consensus regarding what distinguishes specialist from non-specialist palliative care to inform service organisation and delivery to patients with life-limiting conditions. Methods: A three-phase Delphi study was undertaken, involving qualitative interviews and two questionnaire cycles. Thirty-one clinicians (nurses, doctors and social workers) working with a wide range of patients participated in interviews, of whom 27 completed two questionnaire cycles. Results: Consensus was gained on 75 items that define specialist palliative care and distinguish it from non-specialist palliative care. Consensus was gained that specialist palliative care clinicians have advanced knowledge of identifying dying, skills to assess and manage complex symptoms to improve quality of life, have advanced communication skills and perform distinct clinical practices (e.g. working with the whole family as the unit of care and providing support in complex bereavement). Non-specialist palliative care involves discussions around futile or burdensome treatments, and care for people who are dying. Conclusions: Areas of connection were identified: clinicians from disease-specific specialties should be more involved in leading discussions on futile or burdensome treatment and providing care to people in their last months and days of life, in collaboration with specialists in palliative care when required. What is known about the topic?: At present there is no evidence-based definition or agreement about what constitutes specialist palliative care (as opposed to palliative care delivered by non-specialists) in the Australian Capital Territory. An agreed definition is needed to effectively determine the workforce required and its clinical skill mix, and to clarify roles and expectations to mitigate risks in not adequately providing services to patients with life-limiting conditions. What does this paper add?: This paper offers, for the first time, an evidence-based definition that distinguishes specialist palliative care from non-specialist palliative care. End of life care and bereavement support are not just the remit of specialist palliative care clinicians. Clinicians from beyond specialist palliative care should lead discussions about futile or burdensome treatment. What are the implications for practitioners?: The findings of this study can facilitate implementation of palliative care strategies by enabling practitioners and patients to distinguish who should be delivering what care. [ABSTRACT FROM AUTHOR]

Background: Research suggests that there may be bereavement experiences and support needs which are specific to family caregivers providing end of life care (EoLC), although this remains an under-researched area. This paper focuses on themes relating to bereavement which were derived from an analysis of free text survey responses collected in a research priority setting exercise for palliative and EoLC. Methods: The priority setting exercise involved a public survey, designed to generate research priorities. Rather than identify research topics, many people instead described their experiences and raised more general questions relating to palliative and end of life care. To explore these experiences and perspectives a supplementary thematic analysis was conducted on the survey responses. 1403 respondents took part, including patients, current and bereaved carers, health and social care professionals, volunteers and members of the public. Results: Several grief issues were identified, which seem specific to the experiences of family caregivers. Responses demonstrated a relationship between death experiences, feelings of guilt and bereavement outcomes for some family caregivers, as well as caregiver experiences of a "void" created by the withdrawal of professional support after death. Communication and support needs were also identified by participants. Conclusion: This analysis provides further evidence of some of the specific effects that caring for a loved one at the end of life can have on bereavement experiences. Finding ways of improving communication around the time of death and effective follow up approaches post death could help to address some of these issues. [ABSTRACT FROM AUTHOR]

Purpose: A nursing home is a place that is familiar with death, since many older adults will spend the latter part of their lives in such a setting. However, research on this topic is still limited, especially in Indonesia. The purpose of this paper is to explore the barriers to successful palliative and, more generally, end-of-life care (EOLC) for older adults in nursing homes and to explore nurses' views on the subject. Design/methodology/approach: The study is of a qualitative nature and it employs a phenomenological approach. In-depth interviews with 15 nurses who taken care of older adults in a nursing home were conducted. The data were analysed using thematic content analysis. Findings: Barriers to effective EOLC include lack of knowledge, ineffectual communication and insufficient resources. Research limitations/implications: Better policies are needed, especially in training related to palliative/EOLC subjects and equitable distribution of professional health workers to overcome the barriers. The government should also encourage collaboration involving hospitals, Puskesmas (Health Centre Services), community and resident care settings in sharing knowledge and skills, especially for nurses. Originality/value: The barriers identified in palliative and EOLC have been found to be almost identical to those encountered in other health services. [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]

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

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]

Background: Advance care planning can be challenging because discussing end-of-life care often has negative connotations. Gamification is a novel approach to encourage advance care planning conversations in Western culture. Aim: To co-design a game with multiple stakeholders to promote advance care planning in Chinese communities. Design: A two-phase design guided by the Medical Research Council framework for developing complex interventions was adopted between May 2019 and August 2020. In phase I, a game prototype was developed based on literature review, expert consultation and end-user consultation. In Phase II, the game prototype was tested among end-users and refined according to their feedback and expertise of a multi-disciplinary team through an iterative process. Setting/participants: Experts in the field of aged care, palliative care, life education and game development and Chinese community-dwelling adults aged 60 years or older. Results: A board game called ' The Five Tastes Found in a Grocery Store ' was developed. The game design was shaped by Bandura's Self-efficacy theory and feedback from experts and end-users. The participants generally found the gaming experience enjoyable and appreciated the opportunity to discuss end-of-life care openly. Conclusions: This study is the first to develop an evidence-informed, theory-based, culturally sensitive game for promoting advance care planning in the Chinese community using a co-design approach. [ABSTRACT FROM AUTHOR]

Demographic development and continuing improvements in supportive and antineoplastic therapies are reasonable predictors of increasing travel activities carried out by patients with malignant diseases. There is a lack of data on travel habits of patients with end-stage oncological diseases. We performed a multi-phased cross-sectional study to gain insights into the intersection of travel medicine and oncology. A total of 82 patients with 21 different cancer entities at a median age of 63 years completed the final questionnaire. 90.2% of all participants rated travelling as an important or very important aspect in their lives, of whom 73.2% had participated in a short- or holiday trip after the cancer diagnosis. All but one (98.8%) participant were about to plan a short- or holiday trip in the near future. Germany (home country) was the most important travel destination, 'Relaxing' and 'enjoying nature' were the most important travel motives. Fatigue and overall (medical) insecurities were major obstacles to carry out travel plans. In conclusion, a high proportion of patients enjoy travelling. Physicians and patients are encouraged to openly discuss holiday-taking in accordance with available guidelines. More research is needed to fully understand needs and obstacles at the crossroads of travel medicine and oncology. [ABSTRACT FROM AUTHOR]

Experience feedback data is increasingly recognised as being helpful in improving healthcare services, and in meeting patient and family needs. This end-of-life care project, based on the principles of appreciative inquiry, sought to learn from the experiences of bereaved people whose relative had died in an acute hospital setting. Informal feedback, offered during a routine telephone call, was thematically analysed and interpreted in an appreciative manner. Confirmatory representations of caring practices and behaviours were identified, categorised and disseminated in a way that enabled staff to come to know and understand end-of-life care at its best, rather than as a set of problematised events. The findings served as a benchmark for individuals and teams to assess and progress their practice reflectively. The authors conclude that staff receptiveness to informal bereaved family feedback may be enhanced by focusing on the positive qualities of end-of-life care within existing practices. [ABSTRACT FROM AUTHOR]

Background: Last Aid Courses (LAC) for adults have been established in 21 countries in Europe, Australia and America to improve the public discussion about death and dying and to empower people to participate in end-of-life care provision. In 2018, the first Last Aid Courses for kids and teens (LAC-KT) were introduced. The aim of the study was to explore the views and experiences of the course participants and Last Aid Course instructors on the LAC-KT. Methods: A mixed-methods approach was used. The views of the LAC-KT participants, aged 7 to 17 years, on the LAC-KT were collected using a questionnaire. In addition, the experiences of the Last Aid Course instructors were explored in focus group interviews. Results: The results show that 84% of the participants had experiences with death and dying and 91% found the LAC-KT helpful for everyone. The majority of the participants appreciate the opportunity to talk and learn about death, dying, grief and palliative care. Conclusions: The LAC-KT is feasible, very well accepted and a welcome opportunity for exchanging and obtaining information about dying, grief and palliative care. The findings of the study indicate that the LAC-KT should be offered to all interested children and teenagers and included in the school curriculum. [ABSTRACT FROM AUTHOR]

Aims and objectives This paper examines the use of structured Palliative Care Case Conferences in long-term care. The issues families bring to the Palliative Care Case Conference, their level of distress prior to the conference, the extent to which these issues are addressed by staff and family satisfaction with this process are described. Background In most developed countries, up to 30% of older people die in long-term care. A palliative approach generally refers to the resident and family as the 'unit of care'. Interventions, which include family in palliative care, are required in this setting. Design Descriptive and thematic results from the intervention arm of a pre-post, sequential mixed method study. Methods Examination of documents of 32 resident/family dyads participating in a Palliative Care Case Conference, and interviews with the residents' family postintervention. Results Main concerns raised by family members prior to a Palliative Care Case Conference were physical and medical needs, pain, end-of-life care planning and nutrition and hydration. Families rated a high level of concern, 7.5 on a 10-point rating scale, prior to the Palliative Care Case Conference. A formalised Palliative Care Case Conference process ensured issues relating to end-of-life care planning, pastoral care, pain and comfort and physical and medical needs were well documented by staff. Issues relating to care processes and the family role in care were less well documented. All families, interviewed postintervention, recommended Palliative Care Case Conferences; and over 90% of families felt their issues were addressed to their satisfaction. Families also reported an increased understanding of the resident's current and future care. Conclusions The Palliative Care Case Conference in long-term care provides an important platform for family to voice concerns. Palliative Care Case Conference documentation indicates that staff are attending to these issues, although more reference to concerns relating to care processes and the family role could be made. Implications for practice Increased communication between staff and family, in the form of a Palliative Care Case Conference, may reduce stress, anxiety and unwanted hospitalisations during the palliative phase. [ABSTRACT FROM AUTHOR]

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Over the past two decades in Australia, there has been significant change in the palliative care sector, the profile of the workforce and its educational requirements. This is reflective of worldwide developments, where educational aspects of palliative care have been integral to the development of service models. This paper describes a project undertaken by the Department of Health in Victoria Australia, to redirect its educational funding towards clinical scholarships to enable clinicians to undertake postgraduate academic studies. The aim of this project was to assess the impact of the Clinical Scholarship Program funding for recipients who undertook postgraduate studies in palliative care. As part of quality assurance, an online survey was distributed to Scholarship recipients across 2 cohorts spanning the years 2008-2010. Recipients were surveyed for the impact and outcomes of their participation in the program. Twenty one-year scholarships for each year (2008-2010), were available to medical, nursing, and allied health professionals currently working in Victoria's public palliative care service system, undertaking postgraduate study in approved courses. Analysis of the data indicated that of most significance was the benefit to the individual, in terms of the impact of study on their professional and personal life and the low rates of employment turnover. Participants also indicated their improved capacity to provide high-quality palliative care services. For the Department of Health this small investment has demonstrated great benefit; and for the palliative care sector it achieved a significant impact enabling an increase in educational opportunities to enhance capacity and capability of the workforce. [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: Palliative care teams work under challenging conditions in a sensitive setting with difficult tasks. The multi-professional team can play an important role. Mindfulness and compassion-based practices are used to build resilience. Our aim was to examine (1) feasibility and acceptability, (2) satisfaction and impact, and (3) opportunities and limitations of a mindfulness course. Methods: An eight-week mindfulness and compassion course was delivered in a university-based specialized palliative care unit. A meditation teacher provided preparatory evening sessions and meditation exercises that could be integrated into daily activities. The scientific analysis of the course was based on a questionnaire developed for quality assessmentThe first two parts consisted of demographic, Likert-type, and free-text items. Part 3 consisted of learning objectives that were self-assessed after finishing the course (post-then). In the analysis, we used descriptive statistics, qualitative content analysis, and comparative self-assessment. Results: Twenty four employees participated. 58% of participants attended 4 or more of the 7 voluntary mindfulness days. 91% expressed moderate to high satisfaction and would recommend the palliative care program to others. Three main categories emerged in the qualitative content analysis: providing feedback on the course, personal impact, and impact on professional life. The opportunity for self-care in a professional context was highlighted. Learning gains (CSA Gain) were high (38.5–49.4%) in terms of knowledge and techniques, moderate (26.2–34.5%) in terms of implementation of learned skills, and rather low (12.7–24.6%) in terms of changes to attitude. Conclusion: Our evaluation shows that the participants of a mindfulness and compassion course considered it as a feasible and welcome tool to familiarize a multi-professional palliative care team with self-care techniques. Trial registration: Internal Clinical Trial Register of the Medical Faculty, Heinrich Heine University Düsseldorf, No. 2018074763 (registered retrospectively on 30th July 2018). [ABSTRACT FROM AUTHOR]

Introduction: Hospital chaplains aid patients confronting challenges related to palliative and end-of-life care, but relatively little is known about how chaplains view and respond to such needs among Muslim patients, and how well. Methods: Telephone qualitative interviews of ~ 1 h each were conducted with 23 chaplains and analyzed. Results: Both Muslim and non-Muslim chaplains raised issues concerning Islam among chaplains, doctors and patients, particularly challenges and misunderstandings between non-Muslim providers and Muslim patients, especially at the end-of-life, often due to a lack of knowledge of Islam, and misunderstanding and differences in perspectives. Due to broader societal Islamophobia, Muslim patients may fear or face discrimination, and thus not disclose their religion in the hospital. Confusion can arise among Muslim patients and families about what their faith permits regarding end-of-life care and pain management, and how to interpret and apply their religious beliefs in hospitals. Muslims hail from different countries, but providers may not fully grasp how these patients' cultural practices may also vary. Chaplains can help address these challenges, playing key roles in mediating tensions and working to counteract Muslim patients' fears, and express support. Yet many Muslim immigrants don't know what "chaplaincy" is and/or prefer a chaplain of their own faith. Muslim chaplains can play vital roles, having expertise that can heighten trust, and educating non-Muslim colleagues, providing in-depth understanding of Islam (e.g., highlighting how Islam is related to Judaism and Christianity) and correcting misconceptions among colleagues. Hospitals without a Muslim chaplain can draw on local community imams. Conclusions: These data highlight how mutual sets of misunderstandings, especially concerning patients' and families' decisions about end-of-life care and pain management, can emerge among Muslim patients and non-Muslim staff that chaplains can help mediate. Non-Muslim chaplains and providers should seek to learn more about Islam. Muslim patients and families may also benefit from enhanced education and awareness of chaplains' availability and scope, and of pain management and end-of-life options. These data thus have several critical implications for future practice, education, and research. [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]

Objective: The purpose of this study was to describe factors affecting the place of death of children with cancer at the end of life. Methods: The descriptive phenomenological approach was used. Eighteen mothers who lost their children to cancer participated in in‐depth interviews. Data were analysed using MAXQDA software version. Codes and categories were developed inductively from participants' narratives. Results: The factors affecting the place of death of children were categorised into two main themes: (1) desires and (2) conditions. Most of the mothers reported that their deceased children wanted to be with their families at the end of life and they wanted to go home. The conditions related to health services were defined as the barriers to the death of their children in the places of death preferred by the mothers. Conclusion: The desire to be close to the child was the main factor affecting the parents' decisions. The findings revealed the prevailing circumstances in the death place decision beyond parental desires. These were the child's health conditions, physical conditions of hospitals, and the lack of home care and paediatric palliative care services, which were factors related to the system, and the lack of other options for parents. [ABSTRACT FROM AUTHOR]

Background: Palliative care is mainly restricted to terminal care. General practitioners (GPs) are not trained to early identify palliative patients with cancer, COPD or heart failure. With the help of the RADboud indicators for PAlliative Care needs (RADPAC), we trained GPs to identify patients' needs and to make a proactive care plan. They were also able to join two role-plays where they discussed the patient's future, and consulted a palliative care consultant to fine-tune the care plan. We evaluated the programme with the GPs and consultants and noted its impact on their daily practice. Methods: Two years after they had participated in the programme, we held semi-structured interviews with the GPs and a focus group interview with the consultants and performed a thematic content analysis. Results: Six consultants and nine GPs participated in the programme. Most GPs and consultants mentioned positive changes in the thinking or acting of GPs regarding early palliative care. A number continued to use the tool to identify patients; most of the others noted they had internalised the indicators. Although half of them still considered discussing end-of-life aspects difficult, particularly in patients with organ failure, the others were more easily able to discuss the future with their palliative patients. Conclusion: Although most GPs and consultants were positive about the training programme and applying it in daily practice, we conclude that in future programmes, more attention needs to paid to timely identification of palliative patients with COPD or CHF and how to discuss the future with them. [ABSTRACT FROM AUTHOR]

Background: There has been a global increase in the number of people who are dying of old age. This development implies a need for good palliative care among older persons at the end of life. Here nursing homes have an important role to play. However, the principles of palliative care have not been sufficiently applied in nursing homes, and there is a need to increase the implementation of palliative care in these settings. Therefore the project named Implementation of Knowledge-Based Palliative Care in Nursing Homes (the KUPA project, to use its Swedish acronym) was started as a contribution to filling this knowledge gap. The aim of the present study was to investigate the professionals' experiences of readiness for change to knowledge-based palliative care at nursing homes after the educational intervention within the KUPA project. Methods: The focus group method was used to interview 39 health-care professionals with the aid of semistructured questions based on the Organizational Readiness for Change theoretical framework. Six focus groups were formed at six nursing homes in two counties in southern Sweden. The groups included different types of professionals: assistant nurses, nurses, occupational therapists, physiotherapists and social workers. The analysis was conducted with an abductive approach and included deductive and inductive content analysis. Results: The analysis revealed one overarching theme: hopeful readiness for change in palliative care despite remaining barriers. The main categories were increased knowledge facilitating development, enhanced team spirit, uncertainty about future plans connected with hopeful readiness and remaining organizational barriers. Conclusions: This study adds knowledge and understanding concerning professionals' readiness for change palliative care in nursing homes and shows how ready nursing home settings undertake these changes in practice. The Organizational Readiness for Change theory proved suitable for application in nursing homes to assess the professionals' experiences and to evaluate educational interventions regardless of the organization's readiness for change. Trial registration: ClinicalTrials NCT02708498, first registration 15/03/2016. [ABSTRACT FROM AUTHOR]

Background The global population is ageing, and rates of multimorbidity and chronic illness are rapidly rising. Given specialist palliative care has been shown to improve overall care and reduce health care costs, how best to provide this care to older people is internationally significant. Aim To examine the knowledge, attitudes and practices of geriatricians in providing palliative care and working with specialist palliative care services. We also aimed to capture self-reported barriers, confidence and satisfaction in providing palliative care. Design A prospective cross-sectional study surveying Australasian geriatricians was conducted. Setting/Participants This was a voluntary anonymous online survey, distributed to all full members of the Australian and New Zealand Society of Geriatric Medicine. Results A total of 168 completed responses were received; 58.3% were female and 36.6% had over 20 years of clinical experience. Most geriatricians (85%) reported caring for patients in their last 12 months of life represented a substantial aspect or most of their practice. Geriatricians overwhelmingly believed they should coordinate care (84%) and derived satisfaction from providing palliative care (95%). The majority (69%) believed all patients with advanced illness should receive concurrent specialist palliative care. Regarding knowledge, participants scored an average of 13.5 correct answers out of 18 in a Modified Palliative Care Knowledge Test. Conclusions Geriatricians find reward in providing generalist palliative care to their patients; however, potential exists for improved collaborations with specialist palliative care services. An evidence base for geriatric patients who benefit most from specialist palliative care services is needed to improve resourcing, collaborative practice and ultimately palliative care delivery. [ABSTRACT FROM AUTHOR]

Objective: To assess the face and content validity, acceptability and feasibility of a French version of the Children's Palliative Outcome Scale (CPOS). Background: Instruments in French used to measure outcomes in pediatric palliative care are lacking. Methods: After forward-backward translation of the 12-item English CPOS to French, we conducted a qualitative pilot study. During semi structured interviews among children and parents, we used the CPOS, the Schedule for the Evaluation of Individual Quality of Life interview guide (SEIQoL) and the Quality of Life in Life-threatening Illness-Family Carer questionnaire (QOLLTI-F), in addition to three expert meetings with PLTs. Results: Fourteen children and adolescents (8-18 years) with life-limiting or life-threatening conditions cared for at home, in hospital or in respite care services, 19 parents, and 9 members of 4 pediatric liaison teams (PLTs) providing palliative care in a Belgian francophone region were included in the study. No families refused to participate. All children with verbal capacities chose to be interviewed in the presence of their parents and a PLT member. The children valued being given the opportunity to share their experiences. New QOL dimensions pertaining to social, emotional, and administrative health-care related issues were added to the original version of the 12-item CPOS, leading to a 22-item CPOS-2. Discussion: The CPOS-2 was perceived as relevant and easy to use by the principal stakeholders. Our study paves the way for a large-scale field study assessing its psychometric characteristics and its implementation in routine clinical care. [ABSTRACT FROM AUTHOR]

Health care professionals' (HCPs) experiences during early pediatric end-of-life care were explored using a theory-building case study approach. Multiple data collection methods including observation, electronic medical record review, and semi-structured interviews were collected with 15 interdisciplinary HCPs across four cases. Within- and across-case analyses resulted in an emerging theory. HCPs' initial awareness of a child's impending death is fluid, ongoing, and informed through both relational and internal dimensions. Initial cognitive awareness is followed by a deeper focus on the child through time-oriented attention to the past, present, and future. HCPs engage in a "delicate dance of figuring out" key issues. Awareness was exemplified through four themes: professional responsibility, staying connected, grounded uncertainty, and holding in. The emerging theoretical model provides a framework for HCPs to assess their ongoing awareness, identify personal assumptions, and inform gaps in understanding when facilitating early end-of-life care discussions with families. [ABSTRACT FROM AUTHOR]

Background: The ERANet-LAC CODE (Care Of the Dying Evaluation) international survey assessed quality of care for dying cancer patients in seven countries, by use of the i-CODE questionnaire completed by bereaved relatives. The aim of this sub study was to explore which factors improve or reduce quality of end-of-life (EOL) care from Norwegian relatives' point of view, as expressed in free text comments. Methods: 194 relatives of cancer patients dying in seven Norwegian hospitals completed the i-CODE questionnaire 6–8 weeks after bereavement; recruitment period 14 months; response rate 58%. Responders were similar to non-responders in terms of demographic details.104 participants (58% spouse/partner) added free text comments, which were analyzed by systematic text condensation. Results: Of the 104 comments, 45% contained negative descriptions, 27% positive and 23% mixed. 78% described previous experiences, whereas 22% alluded to the last 2 days of life. 64% of the comments represented medical/surgical/oncological wards and 36% palliative care units. Four main categories were developed from the free text comments: 1) Participants described how attentive care towards the practical needs of patients and relatives promoted dignity at the end of life, which could easily be lost when this awareness was missing. 2) They experienced that lack of staff, care continuity, professional competence or healthcare service coordination caused uncertainty and poor symptom alleviation. 3) Inadequate information to patient and family members generated unpredictable and distressing final illness trajectories. 4) Availability and professional support from healthcare providers created safety and enhanced coping in a difficult situation. Conclusions: Our findings suggest that hospitals caring for cancer patients at the end of life and their relatives, should systematically identify and attend to practical needs, as well as address important organizational issues. Education of staff members ought to emphasize how professional conduct and communication fundamentally affect patient care and relatives' coping. [ABSTRACT FROM AUTHOR]

The objective of this mixed methods study was to evaluate the feasibility and acceptability of using a virtual world educational environment for interprofessional health professions students learning about palliative care. Graduate students (n = 35) from five different health professions programs (medicine, nursing, nutrition, physical therapy, and social work) across two educational institutions participated in a small-group immersive educational experience focused on palliative care in the virtual world of Second Life. Collected data included pre and post surveys of interprofessional attitudes using previously-published questionnaires as well as student reflective writing and photographs about their experience. We found it was feasible to create and deliver an interprofessional educational experience in palliative care in a virtual world environment. The educational experience was acceptable to participants, with an improvement in attitudes toward interprofessional education and interprofessional teamwork after a single virtual world educational session, based on both quantitative and qualitative results. Students found the virtual world environment acceptable for interprofessional education focused on palliative care, based on qualitative results. As health professions schools develop interprofessional education curricula, the use of virtual world technology may be an important modality to consider, to effectively and conveniently bring interprofessional learners together. [ABSTRACT FROM AUTHOR]

Background: There is evidence that psychosocial and spiritual interventions of short duration, such as reminiscence therapy, provide positive impacts on quality of life and emotional and existential well-being in adults receiving palliative care. Aim: To determine (1) the feasibility of integrating 'LIFEView', a video-based software with >1600 videos of world destinations, in palliative care settings, and (2) positive, neutral or harmful effects of using 'LIFEView' videos. Design: A mixed-methods pre–post intervention pilot study was conducted to collect feasibility and preliminary data on physical and psychological symptoms, physiological indicators, spiritual well-being and aspects of quality of life. Setting/participants: Adult patients on an inpatient palliative care unit or receiving care from a community palliative care consultation team who were capable of providing consent and completing the outcome measures were eligible participants. Results: Overall, 27/41 (66%) participants took part in the study. Feasibility criteria, including participant acceptability, low participant burden, tool completion rate and retention rate, were fulfilled, though challenges were experienced with recruitment. Modest improvements, though non-significant, were shown on preliminary data collected on physical and psychological symptoms using the Edmonton Symptom Assessment System–revised, spiritual well-being assessed by the 12-item Functional Assessment of Chronic Illness Therapy – Spiritual Well-Being scale and physiological measurements. Qualitative analysis revealed five themes: motivations for using 'LIFEView', perceptions of the technology, reminiscence, 'LIFEView' as an adaptable technology and ongoing or future use. Conclusion: A future adequately powered study to investigate the impacts of 'LIFEView' on patient well-being and quality of life appears to be feasible. [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]

Background: Evaluations of complex interventions compared to usual care provided in palliative care are increasing. Not describing usual care may affect the interpretation of an intervention's effectiveness, yet how it can be described remains unclear. Aim: To demonstrate the feasibility of using multi-methods to describe usual care provided in randomised controlled trials (RCTs) of complex interventions, shown within a feasibility cluster RCT. Design: Multi-method approach comprising usual care questionnaires, baseline case note review and focus groups with ward staff completed at study end. Thematic analysis of qualitative data, descriptive statistics of quantitative data, followed by methodological triangulation to appraise approach in relation to study aim. Setting/participants: Four general medical wards chosen from UK hospitals. Purposive sampling of healthcare professionals for usual care questionnaires, and focus groups. Review of 20 patients' notes from each ward who died during admission or within 100 days of discharge. Results: Twenty-three usual care questionnaires at baseline, two focus groups comprising 20 healthcare professionals and 80 case note reviews. Triangulation of findings resulted in understanding the usual care provided to the targeted population in terms of context, structures, processes and outcomes for patients, families and healthcare professionals. Usual care was described, highlighting (1) similarities and embedded practices, (2) heterogeneity and (3) subtle changes in care during the trial within and across sites. Conclusions: We provide a feasible approach to defining usual care that can be practically adopted in different settings. Understanding usual care enhances the reliability of tested complex interventions, and informs research and policy priorities. [ABSTRACT FROM AUTHOR]

Objectives: Patients in oncological and palliative care (PC) often have complex needs, which require a comprehensive treatment approach. The assessment of patient-reported outcomes (PROs) has been shown to improve identification of patient needs and foster adjustment of treatment. This study explores occupational routines, attitudes and expectations of physicians and nurses with regards to a planned electronic assessment system of PROs. Methods: Ten physicians and nine nurses from various PC settings in Southern Germany were interviewed. The interviews were analysed with qualitative content analysis. Results: The interviewees were sceptical about the quality of data generated through a patient self-assessment system. They criticised the rigidity of the electronic assessment questionnaire, which the interviewees noted may not fit the profile of all palliative patients. They feared the loss of personal contact between medical staff and patients and favoured in-person conversation and on-site observations on site over the potential system. Interviewees saw potential in being able to discover unseen needs from some patients. Interviewees evaluated the system positively in the case that the system served to broadly orient care plans without affecting or reducing the patient-caregiver relationship. Conclusions: A significant portion of the results touch upon the symbolic acceptance of the suggested system, which stands for an increasing standardisation and technisation of medicine where interpersonal contact and the professional expertise are marginalized. The study results can provide insight for processes and communication in the run-up to and during the implementation of electronic assessment systems. [ABSTRACT FROM AUTHOR]

Aims and objectives: To evaluate the availability of, adherence to, and perceived usefulness of guidelines and protocols for managing hydration and subcutaneous hydration in palliative care settings. Background: Hydration at the end of life and the use of a subcutaneous route to hydrate generate some controversy among health professionals for different reasons. Having guidelines and protocols to assist in decision‐making and to follow a standard procedure may be relevant in clinical practice. Design: Cross‐sectional telephone survey, with closed‐ended and open‐ended questions designed specifically for this study. Methods: Data were obtained from 327 professionals, each from a different palliative care service. Mean, standard deviation, minimum and maximum were calculated for continuous variables; frequency distributions were obtained for categorical variables. A qualitative content analysis was performed on the open‐ended questions. The article adheres to the STROBE guidelines for reporting observational studies. Results: Only 24.8% of the participants had guidelines available to assist in making decisions regarding hydration, and 55.6% claimed to follow them 'always or almost always'. Of the participants, 38.8% had subcutaneous hydration protocols available, while 78.7% stated that they 'always or almost always' followed these protocols. The remaining participants considered the protocols as useful tools despite not having them available. Conclusions: Only 25% of the participants' services had guidelines for hydration, and less than 40% had protocols for subcutaneous hydration. However, adherence was high, especially in cases where protocols existed. Among the participants who did not have guidelines and protocols, attitudes were mostly favourable, but mainly as a reference and support for an individualised clinical practice. Relevance to clinical practice: Guidelines and protocols on hydration in palliative care may be more useful as a solid reference and support for individualised practice than as instruments for standardising care. From this perspective, their development and availability in palliative care services are recommended. [ABSTRACT FROM AUTHOR]

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This paper presents a study that examines the potential value of a new and innovative inter-professional education (IPE) experience for final year midwifery and children's nursing students focused on improving awareness of end-of-life care for infants in conjunction with the support of their families. The study uses an action research approach to examine midwifery and children's nursing student experiences of an IPE initiative in developing knowledge regarding perinatal/neonatal palliative care. The setting is a Higher Education Institute in the South of England that included final year midwifery students (n = 39) and children's nursing students (n = 34) taking part in the study. Qualitative and quantitative data indicated that the IPE intervention had proven worth in developing knowledge and confidence in the students as both student groupings felt they lacked knowledge and confidence about perinatal/neonatal palliative care before attending the study day. Students felt that learning with, from and about the other profession represented was important in generating their knowledge. Educators should explore innovative ways to enable the further development of the fledgling speciality of perinatal/neonatal palliative care through education on an interprofessional platform. • IPE can be successful in aiding midwifery and children's nursing students' understanding about caring for infants with life-limiting conditions and their families. • An IPE approach should complement profession specific knowledge midwifery and children's nursing students must acquire during their respective education programmes. • Contributions from service users further enhance student learning however, facilitators should be cognizant of students' feelings given sensitive parent narratives. • Undergraduate midwifery and nursing curricula should include IPE opportunities involving elements relating to perinatal/neonatal palliative care. [ABSTRACT FROM AUTHOR]

Background: Palliative care aims to reduce physical suffering and the emotional, spiritual, and psychosocial distress of life-limiting illness. Palliative care is a human right, yet there are vast disparities in its provision: of the 40 million people globally in need of palliative care, less than 10% receive it, largely in high-income countries. There is a particular paucity of data on palliative care needs across the spectrum of incurable disease in Ethiopia. Objectives: The aims of this research were to assess the overall burden of life-limiting illness, the costs associated with life-limiting illness, and barriers to accessing palliative care in Ethiopia. Design: Mixed-methods case-series. Setting/Subjects: One hundred adults (mean age: 43.7 ± 14 years, 64% female) were recruited at three outpatient clinics (oncology, HIV, noncommunicable disease) and hospice patient homes in Ethiopia. Measurements: Four internationally validated questionnaires were used to assess physical symptoms, psychosocial distress, and disability. In-depth interviews gauged poverty level, costs of care, and end-of-life preferences. Qualitative data were analyzed by thematic content, quantitative data by standard descriptive, frequency and regression analyses. Results: In oncology, 95.5% of the population endorsed moderate or severe pain, while 24% were not prescribed analgesia. Importantly, 80% of the noncommunicable disease population reported moderate or severe pain. The mean psychosocial distress score was 6.4/10. Severe disability was reported in 26% of the population, with mobility most affected. Statistically significant relationships were found between pain and costs, and pain and lack of well-being. Very high costs were reported by oncology patients. Oncology withstanding, the majority of subjects wished to die at home. Oncology patients cited pain control as the top reason they preferred a hospital death. Conclusion: There are extensive unmet palliative care needs in Ethiopia. Untreated pain and high costs of illness are the major contributors to psychosocial distress and financial crisis in this Ethiopian population. [ABSTRACT FROM AUTHOR]

Background There is broad consensus within the disability field that the end-of-life care offered to people with intellectual disabilities should be of a quality consistent with that advocated by contemporary palliative care. In practice, however, various barriers are encountered when applying palliative care strategies to the end-of-life care of people with intellectual disabilities, particularly those in disability community living services. Methods A mixed-methods approach was used. Quantitative data were gathered through a survey of disability support staff working in government-managed community living services in the Australian state of Victoria. These quantitative data informed the collection of qualitative data through focus groups and research interviews. A public health palliative care framework provided the basis for developing an organizational change model from the consolidated data. Results There is a strong relationship between organizational structure and culture, and both influence end-of-life practice in community living services. Barriers to good practice arise from the differing attitudes of paid carers involved, and from uncoordinated approaches reflecting misaligned service systems in the disability and palliative care fields. Organizational reorientation is crucial to achieving sustainable change that will support healthy dying. Conclusions End-of-life care requires the collaboration of disability and palliative care services, but for care to achieve palliative care goals, the collaboration must be led by disability services. We outline here an organizational model we have developed from public health principles to manage end-of-life care in community living services. [ABSTRACT FROM AUTHOR]

Background: Maintaining a sense of self-care while providing patient centered care, can be difficult for practitioners in palliative medicine. We aimed to pilot an "on the job" mindfulness and compassion-oriented meditation training for interdisciplinary teams designed to reduce distress, foster resilience and strengthen a prosocial motivation in the clinical encounter. Methods: Our objective was to explore the feasibility and effectiveness of this newly developed training. The study design was an observational, mixed-method pilot evaluation, with qualitative data, self-report data, as well as objective data (cortisol) measured before and after the program. Twenty-eight staff members of an interdisciplinary palliative care team participated in the 10-week training conducted at their workplace. Measures were the Perceived Stress Questionnaire, the Maslach Burnout Inventory, the somatic complaints subscale of the SCL-90-R, the Emotion Regulation Skills Questionnaire, the Hospital Anxiety and Depression Scale, and a Goal Attainment Scale that assessed two individual goals. Semi-structured interviews were employed to gain insight into the perceived outcomes and potential mechanisms of action of the training. T-tests for dependent samples were employed to test for differences between baseline and post-intervention. Results: Significant improvements were found in two of three burnout components (emotional exhaustion and personal accomplishment), anxiety, stress, two emotional regulation competences and joy at work. Furthermore, 85% of the individual goals were attained. Compliance and acceptance rates were high and qualitative data revealed a perceived enhancement of self-care, the integration of mindful pauses in work routines, a reduction in rumination and distress generated in the patient contact as well as an enhancement of interpersonal connection skills. An improvement of team communication could also be identified. Conclusions: Our findings suggest that the training may be a feasible, effective and practical way of reducing caregiver-distress and enhancing the resources of palliative care teams. [ABSTRACT FROM AUTHOR]

Background: Primary care physicians (General Practitioners (GPs)) play a pivotal role in providing end of life care (EoLC). However, many lack confidence in this area, and the quality of EoLC by GPs can be problematic. Evidence regarding educational needs, learning preferences and the acceptability of evaluation methods is needed to inform the development and testing of EoLC education. This study therefore aimed to explore GPs' EoLC educational needs and preferences for learning and evaluation. Methods: A qualitative focus group study was conducted with qualified GPs and GP trainees in the UK. Audio recordings were transcribed and analysed thematically. Expert review of the coding frame and dual coding of transcripts maximised rigour. Results: Twenty-eight GPs (10 fully qualified, 18 trainees) participated in five focus groups. Four major themes emerged: (1) why education is needed, (2) perceived educational needs, (3) learning preferences, and (4) evaluation preferences. EoLC was perceived as emotionally and clinically challenging. Educational needs included: identifying patients for palliative care; responsibilities and teamwork; out-of-hours care; having difficult conversations; symptom management; non-malignant conditions; and paediatric palliative care. Participants preferred learning through experience, working alongside specialist palliative care staff, and discussion of real cases, to didactic methods and e-learning. 360° appraisals and behavioural assessment using videoing or simulated interactions were considered problematic. Self-assessment questionnaires and patient and family outcome measures were acceptable, if used and interpreted correctly. Conclusions: GPs require education and support in EoLC, particularly the management of complex clinical care and counselling. GPs value mentoring, peer-support, and experiential learning alongside EoLC specialists over formal training. [ABSTRACT FROM AUTHOR]

Background/aim: Palliative care is based on multi-professional team work. In this study, we investigated how cleaning staff communicate and interact with seriously ill and dying patients as well as how cleaning staff cope with the situation of death and dying. Design: Sequential mixed methods, consisting of semi-structured interviews, focus groups, and a questionnaire. Interviews and focus group discussions were content analyzed and results were used to create a questionnaire. Quantitative data were submitted to descriptive analysis. Setting: Large university clinic in southern Germany. Participants: A total of 10 cleaning staff participated in the interviews and 6 cleaning staff took part in the focus group discussion. In addition, three managerial cleaning staff participated in a separate focus group. Questionnaires were given to all cleaning staff (n = 240) working at the clinic in September 2008, and response rate was 52% (125/240). Results: Cleaning staff described interactions with patients as an important and fulfilling aspect of their work. About half of participants indicated that patients talk with them every day, on average for 1–3 min. Conversations often revolved around casual topics such as weather and family, but patients also discussed their illness and, occasionally, thoughts regarding death with cleaning staff. When patients addressed illness and death, cleaning staff often felt uncomfortable and helpless. Conclusion: Cleaning staff perceive that they have an important role in the clinic—not only cleaning but also supporting patients. Likewise, patients appreciate being able to speak openly with cleaning staff. Still, it appears that cleaning staff may benefit from additional training in communication about sensitive issues such as illness and death. [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: Decisions about medical indication are a relevant problem in pediatrics. Difficulties arise from the high prognostic uncertainty, the decisional incapacity of many children, the importance of the family, and conflicts with parents. The objectivity of judgments about medical indication has been questioned. Yet, little is known about the factors pediatricians actually include in their decisions. Aim: Our aims were to investigate which factors pediatricians apply in deciding about medical indication, and how they manage conflicts with parents. Design: We performed a qualitative focus group study with experienced pediatricians. The transcripts were subjected to qualitative content analysis. Setting/participants: We conducted three focus groups with pediatricians from different specialties caring for severely ill children/adolescents. They discussed life-sustaining treatment in two case scenarios that varied according to diagnosis, age, and gender. Results: The decisions about medical indication were based on considerations relating to the individual patient, to the family, and to other patients. Individual patient factors included clinical aspects and benefit–burden considerations. Physicians’ individual views and feelings influenced their decision-making. Different factors were applied or weighed differently in the two cases. In case of conflict with parents, physicians preferred solutions aimed at establishing consensus. Conclusion: The pediatricians defined medical indication on a case-by-case basis and were influenced by emotional reasoning. In contrast to prevailing ethico-legal principles, they included the interests of other persons in their decisions. Decision-making strategies should incorporate explicit discussions of social aspects and physicians’ feelings to improve the transparency of the decision-making process and reduce bias. [ABSTRACT FROM AUTHOR]

Aims and objectives The purpose of the study was to examine nurses' and nursing assistants' perspectives of a palliative approach in a variety of nursing care settings that do not specialise in palliative care. Background Ageing populations worldwide are drawing increasing attention to palliative care. In particular, people with advancing chronic life-limiting conditions often have unmet needs and may die in acute medical, residential care and home health settings without access to palliative care. A palliative approach offers an upstream orientation to adopt palliative care principles to meet the needs of people with life-limiting chronic conditions, adapt palliative care knowledge to other chronic illness conditions, and integrate and contextualise this knowledge within the healthcare system (Sawatzky et al. 2016). Design A qualitative study using the method of interpretive description carried out by a nursing research-practice collaborative, Initiative for a Palliative Approach: Evidence and Leadership (iPANEL). Methods Twenty-five nurses and five nursing assistants from across British Columbia, Canada participated in interviews and focus groups. Thematic analysis was used to analyse the data. Results The overarching theme was that of participants close to a palliative approach in that they cared for people who would benefit from a palliative approach, they were committed to providing better end-of-life care, and they understood palliative approach as an extension of specialised palliative care services. Participants varied in their self-reported capacity to integrate a palliative approach, as they were influenced by role clarity, interprofessional collaboration and knowledge. Conclusions Integration of a palliative approach requires a conceptual shift and can be enhanced through interpersonal relationships and communication, role clarification and education. Relevance to clinical practice Nurses care for people with advancing chronic life-limiting conditions in a variety of settings who would benefit from a palliative approach. [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]