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]

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]

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]

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]

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]