Search

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]

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: 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]

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: 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]

Copyright of Journal of Advanced Nursing (John Wiley & Sons, Inc.) is the property of John Wiley & Sons, Inc. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

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: Palliative care has evolved to encompass early integration, with evaluation of patient and organisational outcomes. However, little is known of staff’s experiences and adaptations when change occurs within palliative care services. Aim: To explore staff experiences of a transition from a service predominantly focused on end-of-life care to a specialist service encompassing early integration. Design: Qualitative research incorporating interviews, focus groups and anonymous semi-structured questionnaires. Data were analysed using a comparative approach. Service activity data were also aggregated. Setting/participants: A total of 32 medical, nursing, allied health and administrative staff serving a 22-bed palliative care unit and community palliative service, within a large health service. Results: Patients cared for within the new model were significantly more likely to be discharged home (7.9% increase, p = 0.003) and less likely to die in the inpatient unit (10.4% decrease, p < 0.001). While early symptom management was considered valuable, nurses particularly found additional skill expectations challenging, and perceived patients’ acute care needs as detracting from emotional and end-of-life care demands. Staff views varied on whether they regarded the new model’s faster-paced work-life as consistent with fundamental palliative care principles. Less certainty about care goals, needing to prioritise care tasks, reduced shared support rituals and other losses could intensify stress, leading staff to develop personalised coping strategies. Conclusion: Services introducing and researching innovative models of palliative care need to ensure adequate preparation, maintenance of holistic care principles in faster work-paced contexts and assist staff dealing with demands associated with caring for patients at different stages of illness trajectories. [ABSTRACT FROM AUTHOR]

The article presents information on a study on the role of doctors in helping dying cancer patients to achieve peace. The study aimed at understanding the features of a peaceful patient and preferences of patients about the role of the doctor in facilitating peace. The study was conducted on 15 dying cancer patients. It is concluded that communication from doctors on prognosis can promote spiritual well-being in cancer patients.

Aims and objectives To evaluate the extent to which the Davies and Oberle (1990) model of supportive nursing has currency across specialist and specialised care settings in England. Background The model describes attributes of palliative nursing for practice and associated educational curricula. It is influential but predates introduction of specialist/specialised care. Its applicability in contemporary care settings has not been evaluated. Design Evaluation was undertaken using sequential mixed methods, predominantly qualitative. Data collected during 2008-2009. Methods Four stages: (1) focus groups involving hospital and community palliative clinical nurse specialists and nurses from three hospice settings (total = 25) to identify setting-specific characteristics, (2) survey of nurses ( n = 48 respondents/31%) with follow-up interviews ( n = 25) to identify congruence with the model, (3) interviews with patients ( n = 6) and carers ( n = 13) for practice evidence and (4) reconvened focus groups ( n = 19 nurses) for confirmation. Results All major dimensions were evidenced. ' Connecting' had reduced emphasis in the hospital setting where specialist nurses spend limited time with patients, but diminishing time to 'connect' with patients and carers as service develops could potentially become problematic across all settings. Two new dimensions (' Displaying expertise' and 'Influencing other professionals') with subdimensions (e.g. ' Advanced communication skills') are proposed as additions to reflect advanced practice. Further new subdimensions (' Making the assessment', ' Prioritising', 'Agreeing the plan') are suggested to be best aligned with the existing dimension ' Connecting'. Conclusions A revised model of supportive care incorporating dimensions of advanced nursing has currency in contemporary specialist/specialised care settings, although evaluation is required as to the actual impact of the model on care outcomes. ' Connecting' is currently being affected by pace of work and lateness of referrals. Implications for practice 'Spending time' is increasingly difficult to sustain so challenging nurses as to how they may continue to 'connect' with patients as service delivery continues to change. [ABSTRACT FROM AUTHOR]

Background: Most studies that have investigated the practice of palliative sedation have focused on physicians' practices and attitudes. Objective: The aim of this study was to explore relatives' experiences with palliative sedation and to gain more insight in positive and negative elements in their evaluation of palliative sedation. Design: Focus groups and individual interviews. Setting: Various care settings in the Netherlands. Subjects: A total of 14 relatives of patients who received palliative sedation until death participated. Results: Most relatives evaluated the provision of palliative sedation of their dying family member positively. Positive experiences were related to: the beneficial impact of palliative sedation on the patient's suffering, the opportunity that was offered to prepare for the patient's death, their involvement in the decision-making and care for the patient, and the pleasant care environment. However, the majority of the relatives were unsatisfied with one or more aspects of how information was being provided for. Some relatives were frustrated about the fact that nurses were not authorized to make decisions about the care for the patient and about the absence of physicians during weekends. None of the relatives mentioned the loss of the ability to communicate with the patient during the sedation and the possibility of 'hastening death' as disadvantages of palliative sedation. Conclusion: Relatives tend to evaluate the provision of palliative sedation to their severely suffering family member positively because it contributes to a peaceful dying process. However, relatives indicated discontent with how information was being provided and with the communication in general. [ABSTRACT FROM AUTHOR]

Our research focuses on the complexity of needs associated with distress in people with advanced cancer. We have recently completed a large longitudinal survey exploring the interplay between a number of components of distress, including depression, demoralisation, debility and spirituality, amongst a cohort of people living with terminal cancer. Participants were recruited from 25 hospices across the Northwest of England between 2007-2009. A purposive subsample of 27 people was invited to take part in a qualitative interview to explore in greater depth their personal experiences of living with illness and related distress. Holistic-content analysis revealed two emerging themes: 'personal or personalised care' and 'expectations of truth and certainty'. We discuss these themes in the light of Illich's critique of health care as a 'technical response to a personal challenge'. We highlight the need for further work to explore the impact of organisation of care on personalised need and suggest looking to the chronic illness self-management literature for help in developing future palliative care approaches. [ABSTRACT FROM AUTHOR]