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Background: Cultural competence resides at the core of undergraduate and postgraduate medical and health professional education. The evolution of studies on cultural competence has resulted in the existence of multiple theoretical frameworks and models, each emphasising certain elements of culturally appropriate care, but generally lacking in providing a coherent and systematic approach to teaching this subject. Methods: Following a meta-ethnographic approach, a systematic search of five databases was undertaken to identify relevant articles published between 1990 and 2022. After citation searching and abstract and full article screening, a consensus was reached on 59 articles for final inclusion. Key constructs and concepts of cultural competence were synthesised and presented as themes, using the lens of critical theory. Results: Three key themes were identified: competences; roles and identities; structural competency. Actionable concepts and themes were incorporated into a new transformative ACT cultural model that consists of three key domains: activate consciousness, connect relations, and transform to true cultural care. Conclusion: This critical review provides an up-to-date synthesis of studies that conceptualise cultural competence frameworks and models in international medical and healthcare settings. The ACT cultural model provides a set of guiding principles for culturally appropriate care, to support high-quality educational interventions.

ContextAdvance care planning (ACP) interventions have the potential to improve outcomes for patients with chronic serious illness. Yet the rationale for outcome choices and the mechanisms by which outcomes are achieved are not always clear.ObjectivesTo identify and map proposed mechanisms on how complex ACP interventions can impact outcomes for patients with chronic serious illness and to explore factors that might explain intervention outcomes.MethodsThis is a scoping review of randomised controlled trials of complex ACP interventions for patients with chronic serious illness which explicitly stated the mechanism(s) by which the intervention was thought to work. We searched six databases and hand-searched key journals and reference lists.ResultsInclusion yielded 16 articles. Inclusion procedures and mapping of mechanisms and outcomes indicated that causality between components and outcomes was not always clearly described. Tailoring intervention content to patients’ needs was linked to the greatest number of different outcome categories, while promoting competence and confidence to engage in ACP was most often explicitly linked to a primary outcome. Three main factors which might have affected intended outcomes were identified: participant characteristics, such as illness experience or cultural differences; the setting of implementation; or methodological limitations of the study.ConclusionFindings highlighted two main points of consideration for future ACP intervention studies: the need for clearly stated logic in how interventions are expected to impact primary outcomes and the importance of considering how an intervention may function for patients with chronic serious illnesses within a specific setting.

Background Advance care planning (ACP), a process of communication about patients’ preferences for future medical care, should be initiated in a timely manner. Ideally situated for this initiation is the general practitioner (GP). The intervention to improve the initiation of ACP for patients with a chronic life-limiting illness in general practice (ACP-GP) includes an ACP workbook for patients, ACP communication training for GPs, planned ACP conversations, and documentation of ACP conversation outcomes in a structured template. We present the study protocol of a Phase-III randomized controlled trial (RCT) of ACP-GP that aims to evaluate its effects on outcomes at the GP, patient, and surrogate decision maker (SDM) levels; and to assess the implementation process of the intervention. Methods This RCT will take place in Flanders, Belgium. Thirty-six GPs, 108 patients with a chronic, life-limiting illness, and their (potential) SDM will be recruited, then cluster-randomized to the ACP-GP intervention or the control condition. The primary outcome for GPs is ACP self-efficacy; primary outcome for patients is level of ACP engagement. Secondary outcomes for GPs are ACP practices, knowledge and attitudes; and documentation of ACP discussion outcomes. Secondary outcomes for patients are quality of life; anxiety; depression; appointment of an SDM; completion of new ACP documents; thinking about ACP; and communication with the GP. The secondary outcome for the SDM is level of engagement with ACP. A process evaluation will assess the recruitment and implementation of the intervention using the RE-AIM framework. Discussion While the general practice setting holds promise for timely initiation of ACP, there is a lack of randomized trial studies evaluating the effectiveness of ACP interventions implemented in this setting. After this Phase-III RCT, we will be able to present valuable evidence of the effects of this ACP-GP intervention, with the potential for offering a well-tested and evaluated program to be implemented in general practice. The results of the process evaluation will provide insight into what contributes to or detracts from implementation success, as well as how the intervention can be adapted to specific contexts or needs. Trial registration Prospectively registered at with ISRCTN (ISRCTN12995230); registered 19/06/2020.

ObjectivesAlthough general practice is an ideal setting for ensuring timely initiation of advance care planning (ACP) in people with chronic life-limiting illness, evidence on the effectiveness of ACP in general practice and how it can be implemented is lacking. This study aims to evaluate feasibility and acceptability of study procedures and intervention components of an intervention to facilitate the initiation of ACP in general practice for people with chronic life-limiting illness.MethodsPilot cluster-randomised controlled trial testing a complex ACP intervention in general practice versus usual care (ClinicalTrials.gov: NCT02775032). We used a mixed methods approach using detailed documentation of the recruitment process, questionnaires and semi-structured interviews.ResultsA total of 25 general practitioners (GPs) and 38 patients were enrolled in the study. The intervention was acceptable to GPs and patients, with GPs valuing the interactive training and patients finding ACP conversations useful. However, we found a number of challenges regarding feasibility of recruitment procedures, such GP as recruitment proceeding more slowly than anticipated as well as difficulty applying the inclusion criteria for patients. Some GPs found initiating ACP conversations difficult. The content of the patient booklet was determined to potentially be too complex for patients with a lower health literacy.ConclusionAlthough the intervention was well-accepted by GPs and patients, we identified critical points for improvement with regard to the study procedures as well as potential improvements of the intervention components. When these points are addressed, the intervention can proceed to a large-scale, phase III trial to test its effectiveness.

Background: Continuity of care is challenging when transferring patients across palliative care settings. These transfers are common due to the complexity of palliative care, which has increased significantly since the advent of palliative care services. It is unclear how palliative care services and professionals currently collaborate and communicate to ensure the continuity of care across settings, and how patient and family members are involved. Aim: To explore healthcare professionals’ experiences regarding the communicative aspects of inter-professional collaboration and the involvement of patient and family members. Design: Qualitative design, including focus group discussions. Setting/participants: The study focused on one palliative care network in Belgium and involved all palliative care settings: hospital, hospital’s palliative care unit, home care, nursing home. Nine group discussions were conducted, with diverse professionals ( n = 53) from different care settings. Results: Timely and effective inter-professional information exchange was considered fundamental. A perceived barrier for interprofessional collaboration was the lack of a shared electronic health record. Efficiency regarding multidisciplinary team meetings and inter-professional communication were subject to improvement. A striking study finding was the perceived insufficient open communication of specialists towards patients and the lack of shared decision making. This not only hampered advance care planning discussions and early integration of palliative home care, but also the functioning of other professionals. Conclusion: From the perspective of the integrated care framework, several areas of improvement on different levels of care and collaboration are identified. Support from policymakers and researchers is required to achieve integrated palliative care in regional networks.

Background and Objectives While decision making about and performance of continuous sedation involve many challenges, they appear to be particularly pervasive in nursing homes. This study aims to identify barriers to the decision making and performance of continuous sedation until death in Flemish nursing homes as experienced by the health care professionals involved. Research Design and Methods Ten focus groups were held with 71 health care professionals including 16 palliative care physicians, 42 general practitioners, and 13 nursing home staff. Discussions were transcribed verbatim and analyzed using a constant comparative approach. Results Perceived barriers concerned factors prior to and during sedation and were classified according to three types: (a) personal barriers related to knowledge and skills including the lack of clarity on what continuous sedation should be used for (linguistic ambiguity) and when and how it should be used (practical ambiguity); (b) relational barriers concerning communication and collaboration both between health care professionals and with family; (c) organizational barriers related to the organization of care in nursing homes where, for example, there is no on-site physician, or where the recommended medication is not always available. Discussion and Implications The findings suggest there are considerable challenges for sound decision making about and performance of continuous sedation until death in nursing homes. There is a need for multicomponent initiatives that provide guidance in the context of the complexity of a resident’s medical situation, the family, and the specific organization of care, which would have the potential to facilitate and improve the decision-making process and performance of continuous sedation in nursing homes.

Background: Palliative care is advocated for older people with frailty and multimorbidity in the community. However, how to best deliver it is unclear. Aim: To develop and model an intervention of short-term specialized palliative care that is initiated timely based on complex care needs and integrated with primary care for older people with frailty and their family, detailing the intervention components, outcomes and preconditions needed for implementation, using a novel theoretical approach. Design: Observational study informed by the UK MRC guidance for complex interventions integrated with a Theory of Change (i.e. hypothetical causal pathway to impact) approach. We synthesized evidence from a systematic review, semi-structured interviews, group discussions and Theory of Change workshops. Setting: Primary care in Flanders, Belgium. Results: We identified patient and family carer-related long-term outcomes and preconditions to achieve them for example, service providers are willing and able to deliver the intervention. The intervention components included implementation components, for example, training for service providers, and a core component, that is, provision of timely short-term specialized palliative care by a specialized palliative home care nurse. The latter includes: short-term service delivery; collaborative and integrative working within primary care; delivery of holistic needs- and capacity-based care; person-centred and family-focussed; and goal-oriented pro-active care. Conclusions: The Theory of Change approach allowed us to identify multiple intervention components targeting different stakeholders to achieve the desired outcomes. It also facilitated a detailed description of the intervention which aims to increase replicability and effective comparisons with other interventions.

Objectives Challenges inherent in the practice of continuous palliative sedation until death appear to be particularly pervasive in nursing homes. We aimed to develop a protocol to improve the quality of the practice in Belgian nursing homes. Methods The development of the protocol was based on the Medical Research Council Framework and made use of the findings of a systematic review of existing improvement initiatives and focus groups with 71 health care professionals [palliative care physicians, general practitioners (GPs), and nursing home staff] identifying perceived barriers to the use of continuous palliative sedation until death in nursing homes. The protocol was then reviewed and refined by another 70 health care professionals (palliative care physicians, geriatricians, GPs, and nursing home staff) through 10 expert panels. Results The final protocol was signed off by expert panels after 2 consultation rounds in which the remaining issues were ironed out. The protocol encompassed 7 sequential steps and is primarily focused on clarification of the medical and social situation, communication with all care providers involved and with the resident and/or relatives, the organization of care, the actual performance of continuous sedation, and the supporting of relatives and care providers during and after the procedure. Although consistent with existing guidelines, our protocol describes more comprehensively recommendations about coordination and collaboration practices in nursing homes as well as specific matters such as how to communicate with fellow residents and give them the opportunity to say goodbye in some way to the person who is dying. Conclusions and Implications This study succeeded in developing a practice protocol for continuous palliative sedation until death adapted to the specific context of nursing homes. Before implementing it, future research should focus on developing profound implementation strategies and on thoroughly evaluating its effectiveness.

Background: There is recognition that older people with incurable conditions should have access to specialist palliative care services. However, it remains unclear which activities and outcomes these services entail for older people in primary care and to which patients they are provided. Aim: The aim of this review was to identify the criteria for referral to specialist services; who provides specialist palliative care; through which activities and with which frequency; which outcomes are reported; and which suggestions are made to improve services. Design: Systematic review of the literature and narrative synthesis. Quality appraisal and selection of studies were performed independently by two researchers. Participant characteristics, intervention features, outcome data and suggestions for improvement were retrieved. Data sources: Embase, Medline, Web of Science, Cochrane, Google Scholar, PsycINFO and CINAHL EBSCO databases (until June 2019). Results: Ten eligible articles, three qualitative, three quantitative, three mixed-method and one narrative review, were identified. Referral criteria were mainly based on patient characteristics such as diagnosis. The specialist services involved a variety of activities and outcomes and descriptions were often lacking. Services could be improved regarding the information flow between healthcare professionals, greater in-depth palliative care knowledge for case managers and social workers, identification of a key worker and support for family carers. Conclusion: The limited evidence available shows areas for improvement of the quality of and access to specialist services for older people, such as support for family carers. In addition, this review underscores the need for comprehensive reporting of interventions and the use of consensus-based outcome measures.

Background: Extensive debate surrounds the practice of continuous sedation until death within end-of-life care. Aim: To provide insight into existing initiatives to support the practice of continuous sedation until death and assess their feasibility and effectiveness. Design: Systematic review and narrative synthesis, registered on PROSPERO (CRD42020149630). Data sources: Records were searched through MEDLINE, EMBASE, CENTRAL, CINAHL, and Web of Science from inception to April 16 2020. Peer-reviewed studies reporting original data on initiatives to support the practice of continuous sedation were included for review. Results: Twenty-one studies met the criteria and were included. Initiatives were focused on assessment tools of consciousness and discomfort (9), the use of guidelines and protocols (8), and expert consultation (3). All initiatives were reported as useful, acceptable, and feasible. Studies on the use of monitoring devices showed that a small proportion of patients were found to be awake, despite the patient being unresponsive according to the observer-based sedation scales. However, the wide range of values of these monitoring devices for comfortable and adequately sedated patients seems to hamper its overall implementation in daily clinical practice. Physicians reported changes in practice conform to guideline recommendations but the shift was modest at best. Expert consultation was regarded as supportive when sufficient expertise is lacking and helpful in avoiding possibly unnecessary sedations. Conclusions: The reviewed initiatives may contribute to improvement of continuous sedation until death, though their evidence base is rather limited. More insight is needed into their feasibility, preconditions for effective implementation and impact in actual practice.

ispartof: Patient Education And Counseling vol:104 issue:3 pages:464-466 ispartof: location:Ireland status: published

IntroductionThere is limited evidence regarding the effectiveness of timely integration of short-term specialised palliative care services for older people in primary care. Using a Theory of Change approach, we developed such an intervention, the Frailty+ intervention. We present the protocol of a pilot randomised controlled trial (RCT) with a process evaluation that aims to assess the feasibility and preliminary effectiveness of the Frailty+ intervention.Methods and analysisWe will conduct a pilot RCT in Flanders, Belgium. Frail older people who are discharged to home from hospital will be identified and recruited. Seventy-six will be randomly assigned either to the control group (standard care) or the intervention group (Frailty+ intervention alongside standard care). Data will be collected from patients and family carers. At the core of the Frailty+ intervention is the provision of timely short-term specialised palliative care facilitated by a nurse from the specialised palliative home care service over a period of 8 weeks. We will assess feasibility in terms of recruitment, randomisation, acceptability of the intervention, retention in the programme and data completion. The primary outcome for assessing preliminary effectiveness is a mean score across five key symptoms that are amenable to change (ie, breathlessness, pain, anxiety, constipation, fatigue), measured at baseline and 8 weeks post-baseline. The process evaluation will be conducted in the intervention group only, with measurements at 8–11 weeks post-baseline to evaluate implementation, mechanisms of change and contextual factors.Ethics and disseminationThe study has been approved by the ethics committee of University Hospital Ghent. Results will be used to inform the design of a full-scale RCT and will be published in a peer-reviewed, open access journal.Trial registration numberISRCTN39282347; Pre-results.

IntroductionNon-communicable diseases (NCDs) are associated with lower health-related quality of life (HRQoL). However, knowledge about those diseases and predictors with a greater impact on patients’ HRQoL as well as knowledge on the complex relationship between HRQoL and comorbidities is lacking. The aim of this study is to assess the impact of NCDs on patients’ HRQoL, with a focus on multimorbidity and socioeconomic status.Methods and analysisA primary care-based cross-sectional study is conducted in Flanders (Belgium). Study participants (≥18 years) are medically diagnosed with at least one of the following diseases: cardiometabolic disorders, mental disorders and musculoskeletal disorders. A minimum of 50 general practitioners will participate to recruit participants (convenient sample) and a total of 531 patients will be enrolled (voluntary response sample). Each participant will complete a paper-based questionnaire to gather research outcomes. Statistical analyses will be performed using multiple linear regression models with HRQoL as main outcome parameter, adjusted for possible confounders. This study will generate new evidence on the key predictors of HRQoL in patients with NCDs, and particularly provide new insights in multimorbidity to improve the quality of care in primary care, to support patients’ self-management and to allocate resources more effectively.Ethics and disseminationThe study has been approved by the Ethical Committee of Ghent University Hospital, Ghent, Belgium (reference number: B670201939629) prior to the beginning of the recruitment. Study results will be disseminated through peer-reviewed publications and conference presentations.

Context Although early integrated palliative home care (PHC) is believed to be beneficial for patients with chronic obstructive pulmonary disease (COPD), trials testing this hypothesis are rare and show inconclusive results. Objectives To test feasibility, acceptability, and preliminary effectiveness of early integrated PHC for end-stage COPD. Methods Testing a six-month early integrated PHC pilot randomized controlled trial given by palliative home care nurses (PHCNs) for end-stage COPD with five components: 1) preinclusion COPD support training for PHCNs; 2) monthly PHC visits; 3) leaflets on coping mechanisms; 4) a protocol on symptom management and support, a care plan and an action plan; and 5) integration of PHC and usual care through reporting and communication mechanisms. Patient-reported outcomes were assessed six times weekly. Participants and health care professionals involved were interviewed. Results Of 70 eligible patients, 39 (56%) participated (20:19 intervention vs control group) and 64% completed the trial. A patient received on average 3.4 PHC visits, mainly for disease insight, symptom management, and care planning. Nurses distributed all reports but hardly connected with health professionals except general practitioners (GPs); eight of 10 interviewed patients referred to the psychosocial support, breathing exercises, and care decisions as helpful. Some GPs criticized PHC being given too early, but pulmonologists and PHCNs did not. Effectiveness analysis showed no overall intervention effect for the outcomes, but between baseline and week 24, fewer hospitalizations in the control group (P = 0.03) and a trend of higher perceived quality of care in the intervention group (P = 0.06) were found. A clinically relevant difference was observed at week 24 for health-related quality of life in favor of the control group. Conclusion Our intervention on early integrated PHC for end-stage COPD is feasible and accepted but did not yield the anticipated preliminary effectiveness. Before moving to a Phase III trial, enhanced coordination of care, more GP involvement, more intensive training for PHCNs in COPD support, and revision of the trial design, for example, of targeted outcomes in line with individual patient goals and care preferences should be done.

Background Evidence-based medicine (EBM) in general practice involves applying a complex combination of best-available evidence, the patient’s preferences and the general practitioner’s (GP) clinical expertise in decision-making. GPs and GP trainees learn how to apply EBM informally by observing each other’s consultations, as well as through more deliberative forms of workplace-based learning. This study aims to gain insight into workplace-based EBM learning by investigating the extent to which GP supervisors and trainees recognise each other’s EBM behaviour through observation, and by identifying aspects that influence their recognition. Methods We conducted a qualitative multicentre study based on video-stimulated recall interviews (VSI) of paired GP supervisors and GP trainees affiliated with GP training institutes in Belgium and the Netherlands. The GP pairs (n = 22) were shown fragments of their own and their partner’s consultations and were asked to elucidate their own EBM considerations and the ones they recognised in their partner’s actions. The interview recordings were transcribed verbatim and analysed with NVivo. By comparing pairs who recognised each other’s considerations well with those who did not, we developed a model describing the aspects that influence the observer’s recognition of an actor’s EBM behaviour. Results Overall, there was moderate similarity between an actor’s EBM behaviour and the observer’s recognition of it. Aspects that negatively influence recognition are often observer-related. Observers tend to be judgemental, give unsolicited comments on how they would act themselves and are more concerned with the trainee-supervisor relationship than objective observation. There was less recognition when actors used implicit reasoning, such as mindlines (internalised, collectively reinforced tacit guidelines). Pair-related aspects also played a role: previous discussion of a specific topic or EBM decision-making generally enhanced recognition. Consultation-specific aspects played only a marginal role. Conclusions GP trainees and supervisors do not fully recognise EBM behaviour through observing each other’s consultations. To improve recognition of EBM behaviour and thus benefit from informal observational learning, observers need to be aware of automatic judgements that they make. Creating explicit learning moments in which EBM decision-making is discussed, can improve shared knowledge and can also be useful to unveil tacit knowledge derived from mindlines.

Background: Despite the risk for developing mental disorders, the majority of advanced cancer patients’ family caregivers undergo a resilient process throughout the caregiving period. Research on resilience in caregivers of advanced cancer patients is scarce and further hindered by the lack of a univocal definition and a theoretical framework. Objectives: To provide clarity on the concept of resilience by proposing an integrative view that can support health care professionals and researchers in conducting and interpreting research on resilience. Methods: The review process was inspired by the hermeneutic methodology: a cyclic review process, consisting of repeated searching and analysing until data saturation is reached and focused on achieving a deeper understanding of ill-defined concepts. The definitions from eighteen reviews on resilience and the theoretical frameworks from eight concept analyses were analysed. The composing elements of resilience were listed and compared. Results: The American Psychological Association’s definition of resilience and Bonanno’s theoretical framework are suggested to guide further research on resilience. Moreover, four knowledge gaps were uncovered: (1) How do resilience resources interact? (2) What are the key predictors for a resilient trajectory? (3) How do the resilient trajectories evolve across the caregiving period? And (4) how does the patient’s nearing death influence the caregiver’s resilience? Conclusion: To address flaws in conceptualization and the resulting gaps in knowledge, we suggest a definition and a theoretical framework that are suited to allow heterogeneity in the field, but enables the development of sound interventions, as well as facilitate the interpretation of intervention effectiveness. ispartof: European Journal Of General Practice vol:26 issue:1 pages:79-85 ispartof: location:England status: published

IntroductionEffective doctor–patient communication in oncology settings can be challenging due to the complexity of the cancer disease trajectory. The challenges can become greater when doctors and patients do not share a common language and need to rely on language mediators. The aim of this study is to provide evidence-based recommendations for healthcare professionals, patients and language mediators on how to interact with each other during language-mediated consultations in oncology settings.Methods and analysisA systematic review of the literature on communication problems in monolingual and multilingual oncology settings will be conducted. Thirty language-mediated consultations with Turkish-speaking or Arabic-speaking cancer patients, language mediators and Dutch-speaking oncologists/haematologists will be video-recorded in three urban hospitals in Flanders, Belgium. All participants will be interviewed immediately after the consultation and 2 weeks after it by means of video-stimulated recall. Multimodal interaction analysis will be combined with qualitative content analysis to allow for the identification of communication practices when communication problems occur.Ethics and disseminationThe study has been approved by the following ethics committees: Ghent University Hospital, Antwerp University Hospital, Antwerp Hospitals Network (ZNA). Results will be published via (inter)national peer-reviewed journals and the findings of the study will be communicated using a comprehensive dissemination strategy aimed at healthcare professionals, patients and language mediators.

Lynn conceptualized end-of-life (EoL) care for patients with advanced chronic-progressive illnesses as a combination of life-preserving/palliative care, the palliative aspect gradually becoming the main focus as death approaches. We checked this concept by exploring the advanced-terminal illness trajectories of 50 patients. Strategies heralding active therapy exhaustion were the catalyst for a participant’s awareness of terminality, but were not a decisive factor in the divergent EoL care pathways we detected. The terms life-preserving and palliative do not adequately capture EoL care pathways due to their conceptual ambiguity. Conversely, the concept of EoL care encompassing three palliative care modalities ( life-prolonging palliative therapy, restorative palliative care, and symptom-oriented [only] palliative care), each harboring a different blend of life-preserving and symptom-comforting aspects, proved adequate. These modalities could run serially, oscillatorily, or parallelly, explaining the divergent EoL care pathways. We suggest an adjustment of the model of Lynn and reconsider the traditional palliative care concept.

Background General practice is an optimal setting for ensuring timely initiation of ACP discussions. A multi-component ACP intervention developed for the general practice setting, aimed at patients with chronic life-limiting illnesses and their general practitioner, has been pilot tested. The aim of this study is to evaluate the effectiveness of this intervention and to evaluate its implementation by means of a process evaluation. Methods/Design Using a cluster-randomized controlled trial (RCT) (randomization at the practitioner level, n=53 practitioners per condition, n=133 patients per condition), we will compare the structured ACP communication intervention to usual care, employing baseline measures (T0), and follow-up at 6 months (T1) and 12 months post-baseline (T2). Primary endpoints are quality of communication about end-of-life care and concordance between patients’ preferences and received care at the end of life (as reported by the family caregiver if the patient died). Other patient or caregiver-reported outcomes include health-related quality of life, anxiety and depression, quality of end-of-life care, and quality of death and dying. Following the RE-AIM framework, structured diaries for trainers and general practitioners, as well as qualitative interviews with general practitioners, patients and family caregivers are among the measures used for the process evaluation. Discussion After this Phase III RCT, we will be able to present a well-tested and evaluated ACP intervention that can be implemented in general practice. The results of the process evaluation will provide insight needed to allow adaptation of the intervention for a greater variety of national and international contexts.

Early integration of palliative home care (PHC) might positively affect people with chronic obstructive pulmonary disease (COPD). However, PHC as a holistic approach is not well integrated in clinical practice at the end-stage COPD. General practitioners (GPs) and community nurses (CNs) are highly involved in primary and home care and could provide valuable perspectives about barriers to and facilitators for early integrated PHC in end-stage COPD. Three focus groups were organised with GPs (n = 28) and four with CNs (n = 28), transcribed verbatim and comparatively analysed. Barriers were related to the unpredictability of COPD, a lack of disease insight and resistance towards care of the patient, lack of cooperation and experience with PHC for professional caregivers, lack of education about early integrated PHC, insufficient continuity of care from hospital to home, and lack of communication about PHC between professional caregivers and with end-stage COPD patients. Facilitators were the use of trigger moments for early integrating PHC, such as after a hospital admission or when an end-stage COPD patient becomes oxygen-dependent or housebound, positive attitudes towards PHC in informal caregivers, more focus on early integration of PHC in professional caregivers’ education, implementing advance care planning in healthcare and PHC systems, and enhancing communication about care and PHC. The results provide insights for clinical practice and the development of key components for successful practice in a phase 0–2 Early Integration of PHC for end-stage COPD (EPIC) trial, such as improving care integration, patients’ disease insight and training PHC nurses in care for end-stage COPD., Chronic lung disease: Improving palliative care Research in Belgium provides insights into the possible implementation of early palliative care (PC) for patients with chronic obstructive pulmonary disease (COPD). While many sufferers of end-stage COPD would benefit emotionally and physically from palliative home care in their final months, many only receive PC in their last few days. Charlotte Scheerens at End-of-life Care Research Group, Ghent University and Vrije Universiteit Brussel (VUB) and co-workers at Ghent University and Vrije Universiteit Brussel (VUB) conducted focus group discussions with 28 general practitioners and 28 community nurses to establish the main barriers to and facilitators for palliative home care implementation for end-stage COPD. Barriers included the unpredictability of the disease, lack of patient understanding of COPD, and complex communication issues between staff across primary care, hospitals and community settings. Identifying ‘triggers’ to implement PC—oxygen dependence, for example—and improving communication and understanding of COPD at all levels could facilitate early integration of palliative home care (PHC).

Background: Research about advance care planning (ACP) has often targeted those with serious illness and limited prognosis, thereby not addressing the preferences of healthy adults or adults with a stable condition. Aims: (i) To describe to what extent patients aged 50 and older who are relatively stable or in good health are thinking about the end of life (EOL) and willing to discuss this with their family physician (FP) and (ii) to explore whether patients and FPs indicate the same topics as triggers for ACP discussions in family practice. Methods: A cross-sectional study was conducted in a diverse sample of 289 patients aged >= 50 years in family practice in Flanders, Belgium. Subsequently, semi-structured interviews were conducted with patients (n = 5) and FPs (n = 5) to explore their preferences and views on ACP in family practice. Results: The majority (69.8%) of patients had thought about the EOL and would appreciate it if their FP would initiate a conversation about this (75.9%). The qualitative interviews revealed that when thinking about the EOL, a number of themes captured the thoughts of people according to both patients and FPs: (i) becoming care dependent, (ii) physical and mental deterioration, (iii) dying alone and (iv) having paperwork in order. However, on the basis of patients' ideas and FPs' experiences in practice, a difference was noticed between them when it comes to identifying the themes as triggers for initiating ACP discussions. Conclusion: Although patients are willing to discuss the EOL with their FPs, patients and FPs identified different themes as triggers to initiate discussions about the EOL. The variation in triggers could lead to missed opportunities to engage in ACP in a timely manner.

Polypharmacy results in adverse drug interactions, high pill burden, and medication costs. Stopping or diminishing potentially inappropriate medication (PIM), is complex . Data on the use of PIM in a primary care context are scarce and deprescribing barriers for general practitioners (GP) are underexplored.Describing the use of PIM in primary care at the end of life, and exploring the barriers for GPs to deprescribe.Retrospective chart review of 210 consecutive patients referred to a palliative home care service and semi-structured interviews with 11 GPs. Percentages were calculated on medication use, linear regression was done to evaluate the effect of diagnosis on PIM use. Thematic analysis was used to analyze the interviews.In total 83 % of patients took at least one PIM. The proportion that continued taking PIMs at the time of referral, one week prior to death and at the day of dying: varies between 6% and 45% according to drug category. Linear regression showed a statistical significant (p 0.001) higher number of PIM use with non-cancer patients (mean 3,1-SD 1,5) than with cancer patients (mean 1,6-SD 1,6). Participants reported being aware of the PIM use, making efforts to deprescribe. Main issues GPs are taking into account are medical, communicative, and collaborative in nature.This study confirms the high level of PIM use in primary care at the end of life. The views of GPs inspire support strategies for deprescribing focusing on shared decision-making with patients and on interprofessional collaboration.

The aim of this study is to test the feasibility of a tool to objectify the functioning of healthcare teams operating in the complexity zone, and to evaluate its usefulness in identifying areas for team quality improvement.We distributed The Complex Adaptive Leadership (CAL™) Organisational Capability Questionnaire (OCQ) to all members of one palliative care team (n=15) and to palliative care physicians in Flanders, Belgium (n=15). Group discussions were held on feasibility aspects and on the low scoring topics. Data was analysed calculating descriptive statistics (sum score, mean and standard deviation). The one sample T-Test was used to detect differences within each group.Both groups of participants reached mean scores ranging from good to excellent. The one sample T test showed statistically significant differences between participants' sum scores within each group (p0,001). Group discussion led to suggestions for quality improvement e.g. enhanced feedback strategies between team members.The questionnaire used in our study shows to be a feasible and useful instrument for the evaluation of the palliative care teams' day-to-day operations and to identify areas for quality improvement.The CAL™OCQ is a promising instrument to evaluate any healthcare team functioning. A group discussion on the questionnaire scores can serve as a starting point to identify targets for quality improvement initiatives.

Background: Cancer care has become complex, requiring healthcare professionals to collaborate to provide high-quality care. Multidisciplinary oncological team (MDT) meetings in the hospital have been implemented to coordinate individual cancer patients’ care. General practitioners (GPs) are invited to join, but their participation is minimal. Objectives: Aim of this study is to explore participating GPs’ perceptions of their current role and to understand their preferences towards effective role execution during MDT meetings. Methods: In May to June 2014, semi-structured interviews (n = 16) were conducted involving GPs with MDT experience in Belgium. The analysis was done according to qualitative content analysis principles. Results: Attendance of an MDT meeting is perceived as part of the GP’s work, especially for complex patient care situations. Interprofessional collaborative relationships and the GP’s perceived benefit to the MDT meeting discussions are important motivators to participate. Enhanced continuity of information flow and optimized organizational time management were practical aspects triggering the GP’s intention to participate. GPs valued the communication with the patient before and after the meeting as an integral part of the MDT dynamics. Conclusion: GPs perceive attendance of the MDT meeting as an integral part of their job. Suggestions are made to enhance the efficiency of the meetings.

High-quality doctor-patient communication in end-of-life care results in better quality of life for patients. In linguistically and culturally diverse societies, language discordant consultations become daily practice, leading to difficulties in eliciting patient preferences toward end-of-life care. Although family members invariably act as informal interpreters, this may cause some ethical dilemmas. We present a case of a palliative patient whose son acted as an interpreter. This case generated a triple- layered ethical dilemma: (i) how to safeguard patient autonomy against paternalistic interventions by family members, (ii) how to respect the relational context in which patient autonomy can be realized, and (iii) how to respect the ethno-cultural values of the patient and his family. These issues are being discussed and reflected upon within the framework shared decision making involving informal- and professional interpreters. The complementary use of professional interpreters next to family members acting as informal interpreters is recommended.

Victims of disaster suffer, not only at the very moment of the disaster, but also years after the disaster has taken place, they are still in an emotional journey. While many moral perspectives focus on the moment of the disaster itself, a lot of work is to be done years after the disaster. How do people go through their suffering and how can we take care of them? Research on human suffering after a major catastrophe, using an ethics of care perspective, is scarce. People suffering from disasters are often called to be in distress and their emotional difficulties ‘medicalised’. This brings them often into a situation of long term use of medication, and one can wonder if medication is of help to them in the long run. In our paper, we will explore another moral perspective, focusing on the importance of the victims’ narrative and their lived experiences. We will use Paul Ricoeur’s phenomenological reflections from ‘Suffering is not the same as pain’ for conceptualizing human suffering and how to apply it to victims of disaster. Ricoeur suggests that suffering is not a quantity that can be measured, but a characteristic that should be studied qualitatively in interpersonal and narrative contexts. Above all, the perspective of care and listening could offer an opportunity to reconcile people from their loss and suffering.

COPD patients often use many medical resources, such as hospital admissions and medical imaging, inappropriately close to death. Palliative home care (PHC) could beneficially affect this. The aim was to study the effect of use and timing of PHC on medical resource use and costs in the last 30 days before death (DBD) for COPD.We performed a retrospective study of all Belgian decedents in 2010–2015 with COPD and a primary cause of death being COPD or cardiovascular diseases. Odds ratios for medical resources were calculated between using and four PHC timing categories (>360, 360–181, 180–91 and 90–31 DBD) versus not using. Confounders were socio-demographic, care intensity and disease severity variables.Of the 58 527 decedents with COPD, 644 (1.1%) patients received PHC earlier than 30 DBD. Using PHC (versus not using) decreased the odds ratio for hospitalisation (0.35), intensive care unit admission (0.16), specialist contacts (0.58), invasive ventilation (0.13), medical imaging including chest radiograph (0.34), sedatives (0.48) and hospital death (0.14). It increased the odds ratio for home care (3.27), general practitioner contact (4.65), palliative care unit admission (2.61), noninvasive ventilation (2.65), gastric tube (2.15), oxygen (2.22) and opioids (4.04) (pHealth policy and services should focus on increasing PHC access, while research should further explore early PHC initiation for COPD.

Background: COPD patients often use extensive medical resources, e.g. frequent hospitalisations, when they are close to death. Palliative home care (PHC) could affect end-of-life medical resource use. However, population studies studying this possible effect for COPD are lacking. Aim: To study the effect of use and timing of PHC on medical resource use in the last 30 days before death (DBD) for COPD. Methods: Retrospective study of all Belgian decedents in 2010-2015 who died with COPD. Odds ratios (OR) for medical resources in the last 30 DBD were calculated between using versus not using PHC, and between four PHC timing categories (>360; 360-181; 180-91; 90-31 DBD) versus not using PHC. Confounders were socio-demographic, care intensity and disease severity variables. Results: Of the 58,527 decedents with COPD, 644 patients (1.1%) received PHC before 30 DBD. Using PHC (versus not using) decreased the OR for hospitalisation (0.35), intensive care unit admission (0.16), specialist contacts (0.58), invasive ventilation (IV) (0.13), medical imaging including chest radiograph (0.34), sedatives (0.48) and hospital death (0.14). It increased the OR for home care (3.27), general practitioner contact (4.65), palliative care unit admission (2.61), non-IV (2.65), gastric tube (2.15), oxygen (2.22), opioids (4.04) and morphine (5.29) (p 360 DBD (p

Interprofessional education and collaborative practice are gradually gaining importance in the context of growing healthcare complexity. The readiness for interprofessional learning scale (RIPLS) is a well-known scale that can identify attitudinal barriers and variance across professions, which may affect educational interventions.This study aims to translate the English RIPLS into Dutch and to test its reliability and validity.The scale was translated and back-translated by two pairs of people independently and tested for feasibility and comprehensibility. The translated scale was used with 219 general practitioners, 238 community nurses, and 53 palliative home-care nurses. Exploratory factor analysis was used to assess construct validity. Confirmatory factor analysis was done to generate a fit model. Cronbach's alpha was computed to evaluate internal consistency. Regression analysis was used to evaluate the effect of the RIPLS score on the level of learning through collaboration and to gauge the influence of the participants' gender, age, previous palliative care education, type of practice and years in practice.Confirmatory and exploratory factor analysis confirms the factor structure of the original version. The Dutch version shows good reliability (overall Cronbach's alpha: 0.88; intraclass correlation coefficient after test-retest: 0.718 (95%CI: 0.499-0.852). The RIPLS score correlates with the amount of workplace learning during collaboration (discriminant validity: P 0.001).The Dutch translation of the RIPLS is now ready for comparative studies.

Objectives workshops and specialized training programs are often inaccessible for speech and language pathologists (SLPs) based in resource-limited countries given the lack of supply, the long travel distances and the excessive participation fees. To stimulate life-long learning opportunities for all, this study described and measured the effect of a free, two-day cleft care workshop for SLPs in Uganda. The workshop included different topics related to the assessment and treatment of children with a cleft of the palate with or without a cleft of the lip (CP ± L). Methods The participants who presented during the two-day course were asked to complete a pre- and post-workshop questionnaire to evaluate their satisfaction. The pre-workshop form also included some questions concerning cleft care in Uganda. Both the pre- and post-workshop forms included three visual analogue scales to investigate the evolution of the participants' estimation of their knowledge regarding speech in patients with a CP ± L and to assess the changes in their self-confidence in the diagnosis and treatment of this population. Results seventeen SLPs completed the pre- and post-workshop questionnaires. In general, the participants were highly satisfied with the different themes covered in the program. After the training course, the participants rated their general knowledge about CP ± L and their self-confidence in the diagnosis and treatment of children with a CP ± L significantly higher than before the workshop. Conclusion the vast majority of the SLPs reported that cleft care was not easily accessible in Uganda. The most commonly reported obstacle for cleft care was a lack of knowledge about this matter in the SLPs themselves highlighting the importance of the organization of additional education opportunities. The participants reported a significantly higher level of self-confidence in diagnosing and treating children with a CP ± L after the workshop. The content of this workshop can form the basis for future learning opportunities for SLPs based in resource-limited countries.

BackgroundFamily caregivers of advanced cancer patients are at risk for developing mental disorders. Despite this risk, the majority seem to adapt well, and throughout the caregiving period, their trajectory is characterised by healthy functioning. However, GPs struggle with making timely assessments of caregivers at risk for mental dysfunction, since they often fail to seek medical help for themselves and the appropriate research about resilience in cancer caregivers is scarce. Moreover, research is hampered by the lack of a universal definition or theoretical framework.AimTo propose a comprehensive definition and framework for further research in family caregiving for advanced cancer patients.MethodInspired by the hermeneutic methodology, reviews and concept analyses on resilience following a potentially traumatic event were searched and analysed. Conforming to the hermeneutic methodology, article collection from PubMed, EMBASE, CINAHL, and PsycInfo was followed by analysis and was stopped when saturation was reached. Elements consistently arising from the definitions of resilience were listed and the theoretical frameworks were compared.ResultsThe APA definition: ‘resilience is the process of adapting well in the face of adversity, trauma or threats’ and Bonanno’s framework ‘temporal elements of resilience’ are proposed.ConclusionThere is a need for studies on resilience in caregivers of advanced cancer patients. Resilience is context-dependent, hence, study results cannot be transferred as such from one clinical situation to another. Furthermore, conceptual ambiguities hinder the interpretation and comparison of study results. For further research on resilience in caregivers of advanced cancer patients, we suggest the APA definition of resilience and Bonanno’s framework.

Background : Research suggests that palliative home care should be integrated early into standard care for end-stage COPD patients. Patients also express the wish to be cared for and to die at home. However, a practice model for early integration of palliative home care (PHC) into standard care for end-stage COPD has not been fully developed. Aim : To develop an intervention for early integration of PHC into standard care for end-stage COPD patients. Methods : We conducted a Phase 0-I study according to the Medical Research Council Framework for the development of complex interventions. Phase 0 aimed to identify the inclusion criteria and key components of the intervention by way of an explorative literature search of interventions, expert consultations, and seven focus groups with general practitioners and community nurses on perceived barriers to and facilitators of early integrated PHC for COPD. In Phase 1, the intervention, its inclusion criteria and its components were developed and further refined by an expert panel and two expert opinions. Results : Phase 0 resulted in identification of inclusion criteria and components from existing interventions, and barriers to and facilitators of early integration of PHC for end-stage COPD. Based on these findings, a nurse-led intervention was developed in Phase I consisting of training for PHC nurses in symptom recognition and physical therapy exercises for end-stage COPD, regular visits by PHC nurses at the patients' homes, two information leaflets on selfmanagement, a semi-structured protocol and follow-up plan to record the outcomes of the home visits, and integration of care by enabling collaboration and communication between home and hospital-based professional caregivers. Conclusion : This Phase 0-I trial succeeded in developing a complex intervention for early integration of PHC for end-stage COPD. The use of three methods in Phase 0 gave reliable data on which to base inclusion criteria and components of the intervention. The preliminary effectiveness, feasibility and acceptability of the intervention will be subsequently tested in a Phase II study.

Purpose: Nutrition-related problems are common in patients with advanced cancer. They can disrupt daily life and routines. This study aimed to explore how couples cope with this source of distress. Methods: A qualitative descriptive study design was adopted using semi-structured interviews. Seven couples, each consisting of an advanced cancer patient and his or her co-habiting life partner, participated. The Qualitative Analysis Guide of Leuven (QUAGOL) was used as a guide to facilitate the analysis process. Results: When a patient communicates nutrition-related problems to the partner, individual coping is often complemented by interactive couple-coping pathways, serving two resilient coping strategies: maintaining normality and creating a new normality. These pathways can have either a practical, an emotional or a distant orientation. Different couple-coping pathways can be observed in the same couple when they are dealing with either one or multiple nutrition-related problems. Some couples, however, seem to cope more rigidly, often those with less observed ‘we-ness’. Conclusions: Nutrition-related problems are inherent to advanced cancer and are perceived as health-threatening. Couple-coping with nutrition-related problems is a dynamic and interactive process leaning on different coping pathways. There is no evidence that one pathway is superior to another, as they all serve a resilient coping strategy. Our findings can assist homecare nurses and other professional caregivers in providing psychological support and advice to couples confronted with nutrition-related problems in advanced cancer. Future research should shed light on whether an unsuitable match in coping styles within a couple is one of the precursors of non-resilient outcomes. ispartof: European Journal of Oncology Nursing vol:38 pages:76-84 ispartof: location:Scotland status: Published online

BACKGROUND: Complexity science has been introduced in healthcare as a theoretical framework to better understand complex situations. Interdisciplinary healthcare teams can be viewed as Complex Adaptive Systems (CAS) by focusing more on the team members' interaction with each other than on the characteristics of individual team members. Viewing teams in this way can provide us with insights into the origins of team behaviour. The aim of this study is to describe the functioning of a healthcare team as it originates from the members' interactions using the CAS principles as a framework and to explore factors influencing workplace learning as emergent behaviour. METHODS: An interview study was done with 21 palliative home-care nurses, 20 community nurses and 18 general practitioners in Flanders, Belgium. A two-step analysis consisted of a deductive approach, which uses the CAS principles as coding framework for interview transcripts, followed by an inductive approach, which identifies patterns in the codes for each CAS principle. RESULTS: All CAS principles were identified in the interview transcripts of the three groups. The most prevalent principles in our study were principles with a structuring effect on team functioning: team members act autonomously guided by internalized basic rules; attractors shape the team functioning; a team has a history and is sensitive to initial conditions; and a team is an open system, interacting with its environment. The other principles, focusing on the result of the structuring principles, were present in the data, albeit to a lesser extent: team members' interactions are non-linear; interactions between team members can produce unpredictable behaviour; and interactions between team members can generate new behaviour. Patterns, reflecting team behaviour, were recognized in the coding of each CAS principle. Patterns of team behaviour, identified in this way, were linked to interprofessional competencies of the Interprofessional Collaboration Collaborative. Factors influencing workplace learning were identified. CONCLUSIONS: This study provides us with insights into the origin of team functioning by explaining how patterns of interactions between team members define team behaviour. Viewing healthcare teams as Complex Adaptive Systems may offer explanations of different aspects of team behaviour with implications for education, practice and research. ispartof: Bmc Health Services Research vol:18 issue:1 ispartof: location:England status: published

Background: Involving patients in decision-making is considered to be particularly appropriate towards the end of life. Professional guidelines emphasize that the decision to initiate continuous sedation should be made in accordance with the wishes of the dying person and be preceded by their consent. Aim: To describe the decision-making process preceding continuous sedation until death with particular attention to the involvement of the person who is dying. Design: Qualitative case studies using interviews. Setting/participants: Interviews with 26 physicians, 30 nurses and 24 relatives caring for 24 patients with cancer who received continuous sedation until death in Belgium, the United Kingdom and the Netherlands. Results: We distinguished four stages of decision-making: initiation, information exchange, deliberation and the decision to start continuous sedation until death. There was wide variation in the role the patient had in the decision-making process. At one end of the spectrum (mostly in the United Kingdom), the physician discussed the possible use of sedation with the patient, but took the decision themselves. At the other end (mostly in Belgium and the Netherlands), the patient initiated the conversation and the physician’s role was largely limited to evaluating if and when the medical criteria were met. Conclusion: Decision-making about continuous sedation until death goes through four stages and the involvement of the patient in the decision-making varies. Acknowledging the potential sensitivity of raising the issue of end-of-life sedation, we recommend building into clinical practice regular opportunities to discuss the goals and preferences of the person who is dying for their future medical treatment and care.

Palliative care is a proven approach to enhance quality of life and care both for people with severe chronic obstructive pulmonary disease (COPD) [1] and those with lung cancer [2], and it is encouraged to start palliative care early in the disease trajectory [3, 4]. Similar symptoms occur in both diseases, such as pain, insomnia, fatigue, low mood and dyspnoea [5], with a study reporting even worse physical and emotional functioning for COPD than for lung cancer [6]. These symptoms signal palliative care needs [6], and require treatment focused on symptom management and psychosocial support for more than just the terminal phase. A high use of healthcare resources in COPD is found, related to a tendency towards aggressive and life-prolonging care [7]. Difficulties in predicting disease trajectories and unclear prognosis have been suggested as explanations for why people with COPD are referred less often for palliative care [8]. Palliative care services are used mainly as terminal care in lung cancer and COPD, with less and later use for COPD

Background: Changes in healthcare practice toward more proactive clinical, organizational and interprofessional working require primary healthcare professionals to learn continuously from each other through collaboration. This systematic review uses realist methodology to consolidate knowledge on the characteristics of workplace learning (WPL) through collaboration by primary healthcare professionals. Methods: Following several scoping searches, five electronic bibliographic databases were searched from January 1990 to December 2015 for relevant gray and published literature written in English, French, German and Dutch. Reviewers worked in pairs to identify relevant articles. A set of statements, based on the findings of our scoping searches, was used as a coding tree to analyze the papers. Interpretation of the results was done in alternating pairs, discussed within the author group and triangulated with stakeholders’ views. Results: Out of 6930 references, we included 42 publications that elucidated who, when, how and what primary healthcare professionals learn through collaboration. Papers were both qualitative and quantitative in design, and focused largely on WPL of collaborating general practitioners and nurses. No striking differences between different professionals within primary healthcare were noted. Professionals were often unaware of the learning that occurs through collaboration. WPL happened predominantly through informal discussions about patient cases and modeling for other professionals. Any professionals could both learn and facilitate others’ learning. Outcomes were diverse, but contextualized knowledge seemed to be important. Discussion/conclusions: Primary care professionals’ WPL is multifaceted. Existing social constructivist and social cognitivist learning theories form a framework from which to interpret these findings. Primary care policy makers and managers should ensure that professionals have access to protected time, earmarked for learning. Time is required for reflection, to learn new ways of interaction and to develop new habits within clinical practice.

Background: Palliative care requires a multidisciplinary care team. General practitioners often ask specialised palliative home care teams for support. Working with specialised nurses offers learning opportunities, also called workplace learning. This can be enhanced by the presence of a learning facilitator. Objectives: To describe the development and evaluation of a training programme for nurses in primary care. The programme aimed to prepare palliative home care team nurses to act as facilitators for general practitioners’ workplace learning. Design: A one-group post-test only design (quantitative) and semi-structured interviews (qualitative) were used. Methods: A multifaceted train-the-trainer programme was designed. Evaluation was done through assignments with individual feedback, summative assessment through videotaped encounters with simulation-physicians and individual interviews after a period of practice implementation. Results: A total of 35 nurses followed the programme. The overall satisfaction was high. Homework assignments interfered with the practice workload but showed to be fundamental in translating theory into practice. Median score on the summative assessment was 7 out of 14 with range 1–13. Interviews revealed some aspects of the training (e.g. incident analysis) to be too difficult for implementation or to be in conflict with personal preferences (focus on patient care instead of facilitating general practitioners’ learning). Conclusion: Training palliative home care team nurses as facilitator of general practitioners’ workplace learning is a feasible but complex intervention. Personal characteristics, interpersonal relationships and contextual variables have to be taken into account. Training expert palliative care nurses to facilitate general practitioners’ workplace learning requires careful and individualised mentoring.