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Background General practitioners (GPs) are important providers of palliative home care (PHC). To deliver adequate palliative care, cooperation with specialised PHC teams is necessary. Specialised PHC is a type of care for severely ill patients by specialised providers. Little is known about the involvement of German GPs in specialised PHC.Objectives To analyse GPs’ experience with realised and desired involvement in specialised PHC. Realised involvement means GPs took part in specialised PHC patients’ care. Desired involvement is GPs’ hoped-for cooperation with specialised PHC teams: GPs could state whether they want to stay involved, be informed, or provide medical services themselves after referral to specialised PHC.Methods Mixed methods design (focus group with 6 GPs; survey of 445 GPs in North Rhine, Germany, about their experiences in PHC/specialised PHC): Qualitative data was interpreted using content analysis. The authors developed a questionnaire and performed descriptive analysis based on qualitative results.Results GPs are mostly satisfied with specialised PHC teams’ care, although they report cooperation is not always optimal. GPs describe a high satisfaction with quality of care by specialised PHC teams. However, physicians with higher PC knowledge are less satisfied with specialised PHC. Also, GPs are often less involved in specialised PHC than they wish, especially when they have a higher PC qualification.Conclusion In general, GPs are satisfied with the quality of care provided by specialised PHC teams but GPs do not always perceive cooperation as optimal. Involvement of GPs in specialised PHC needs to be improved.

Background To deliver optimal palliative care, a Care Pathway for Primary Palliative Care (CPPPC) was developed. This CPPPC was implemented by general practitioners (GPs) in territories of five Belgian palliative care networks (2014–2016). Belgian doctors have much therapeutic freedom, and do not commonly follow guidelines. Objectives To assess how palliative care was provided by GPs before the CPPPC and its implementation project were presented publicly. Methods Between 2013 and 2015, seven focus groups with GPs were conducted. Participants included 15 GPs in three French-speaking focus groups and 26 GPs in four Dutch-speaking focus groups, with diversity for age, gender, palliative care experience and practice context. Some GPs implemented the CPPPC later. Results GPs considered each palliative care case unique and disliked strict protocols. However, they expressed a need for peer review and reflective frameworks. GPs felt it is important to identify palliative care patients ‘timely’, but found this difficult. Screening methods help, but are not widely used. GPs struggled most with identifying palliative care needs in non-oncological patients. Bad news breaking was considered difficult. Continuity of care was considered very important. However, advance care planning seemed more widely practised by Dutch-speaking GPs than by French-speaking GPs. The taboo of palliative care provoked emotional discussions. Conclusion Palliative care frameworks which help GPs to deliver ‘tailor-made’ care have more chance to be adopted than strict protocols. GPs should be given education for bad news breaking. Palliative care and advance care planning practices differ locally: guideline dissemination plans should respect these local differences.

Background Despite the risk for developing mental disorders, most 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 focussed 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 conceptualisation 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.

In 2015, euthanasia accounted for 4.5% of deaths in the Netherlands, of which 93% were performed by a GP. Historically, a conflict of physician’s duties—to alleviate unbearable suffering and at the same time preserve the patient’s life—is central to the justification of euthanasia practice in the Netherlands. However, there seems to be a shift towards a greater emphasis on the patient’s autonomous wish as the primary basis for euthanasia. This shift has consequences for the role and interpretation of the physician’s duties in end-of-life care. This paper aims to describe these developments in euthanasia practice and end-of-life decision-making. We describe important relevant developments and look into the role and the meaning of two dimensions of the concept of ‘patient autonomy’ regarding end-of-life decisions, in particular, the euthanasia request. We claim that the concept of autonomy ‘as a right,’ which can be distinguished from autonomy ‘as an ideal,’ narrows the physician’s window of opportunity to offer end-of-life care other than euthanasia.

Background: General practice recognizes the existential dimension as an integral part of multidimensional patient care alongside the physical, psychological and social dimensions. However, general practitioners (GPs) report substantial barriers related to communication with patients about existential concerns. Objectives: To describe the development of the EMAP tool facilitating communication about existential problems and resources between GPs and patients with cancer. Methods: A mixed-methods design was chosen comprising a literature search, focus group interviews with GPs and patients (n = 55) and a two-round Delphi procedure initiated by an expert meeting with 14 experts from Denmark and Norway. Results: The development procedure resulted in a semi-structured tool containing suggestions for 10 main questions and 13 sub-questions grouped into four themes covering the existential dimension. The tool utilized the acronym and mnemonic EMAP (existential communication in general practice) indicating the intention of the tool: to provide a map of possible existential problems and resources that the GP and the patient can discuss to find points of reorientation in the patient’s situation. Conclusion: This study resulted in a question tool that can serve as inspiration and help GPs when communicating with cancer patients about existential problems and resources. This tool may qualify GPs’ assessment of existential distress, increase the patient’s existential well-being and help deepen the GP–patient relationship.

Accessible summary: Dementia is an illness caused by damage to a person's brain. People with learning disabilities, especially people with Down's Syndrome, are more likely to get dementia, and when they are younger. We talked to people working in community learning disability teams to find out what they thought about services and support for people with learning disabilities and dementia and carers. Screening and assessments mean that people get diagnosis and support more quickly and other problems are picked up. More appropriate housing and support is needed so people can stay at home for longer. Research needs to look at the best ways to support people with learning disabilities and dementia. It is important to find ways to involve people with learning disabilities and dementia and carers in meetings about their support and future research. Abstract: Background: Dementia prevalence rates are higher amongst people with learning disabilities than the general population. People with Down's syndrome are at even greater risk of developing dementia and of developing dementia at an earlier age. This study, conducted as part of a wider service evaluation, explored community learning disability team perspectives on screening, pathways, training, information and supports developed to improve services for people with learning disabilities and dementia. Methods: A focus group was held with health and social care professionals working in community learning disability services. Thematic analysis was used to analyse the data. Results: The dementia screening, pathways and processes had become embedded in practice, leading to a common framework, an efficient, multidisciplinary, proactive approach, earlier detection and diagnosis of dementia and identification of other health needs and issues. This avoided crisis situations supporting people to remain at home longer. Training and information were felt to improve care quality and reduce caregiver anxiety. People with learning disabilities and caregivers were involved to varying extents. External influences impacting on support included the availability, appropriateness, cost and effectiveness of different models of service provision. Conclusions: Service developments have been made as a result of the findings which suggest that dementia pathways and supports improve service provision and outcomes for people with learning disabilities. It is important to develop the evidence base on the effectiveness of different service models for people with learning disabilities and dementia. Future studies need to gather views of people with learning disabilities and carers. [ABSTRACT FROM AUTHOR]

Background: General practitioners (GPs) are important providers of palliative home care (PHC). To deliver adequate palliative care, cooperation with specialised PHC teams is necessary. Specialised PHC is a type of care for severely ill patients by specialised providers. Little is known about the involvement of German GPs in specialised PHC., Objectives: To analyse GPs' experience with realised and desired involvement in specialised PHC. Realised involvement means GPs took part in specialised PHC patients' care. Desired involvement is GPs' hoped-for cooperation with specialised PHC teams: GPs could state whether they want to stay involved, be informed, or provide medical services themselves after referral to specialised PHC., Methods: Mixed methods design (focus group with 6 GPs; survey of 445 GPs in North Rhine, Germany, about their experiences in PHC/specialised PHC): Qualitative data was interpreted using content analysis. The authors developed a questionnaire and performed descriptive analysis based on qualitative results., Results: GPs are mostly satisfied with specialised PHC teams' care, although they report cooperation is not always optimal. GPs describe a high satisfaction with quality of care by specialised PHC teams. However, physicians with higher PC knowledge are less satisfied with specialised PHC. Also, GPs are often less involved in specialised PHC than they wish, especially when they have a higher PC qualification., Conclusion: In general, GPs are satisfied with the quality of care provided by specialised PHC teams but GPs do not always perceive cooperation as optimal. Involvement of GPs in specialised PHC needs to be improved.

Accessible summary We are a team of four researchers, two of whom have learning disabilities., We did two studies using focus groups with people with learning disabilities. One study was about 'What is it like for people with learning disabilities to have someone in their family or a friend with cancer?' The other study was about 'How to break bad news to people with learning disabilities?', This article tells the story of how we did focus groups together. The researchers with learning disabilities helped to plan, to run the groups and to look at the results afterwards., We did different things in the focus groups. We talked together and also used storytelling, role-play and voting., Researchers with learning disabilities can really help the group to open up and talk about difficult subjects., Summary This paper presents two studies using focus groups with people with learning disabilities. One study was about 'What is it like for people with learning disabilities who have a family or friend with cancer?' and other study was about 'How to break bad news to people with learning disabilities?' Two of the researchers had learning disabilities themselves. This article reports how we worked together as a team. The focus groups involved various methods for data collection such as storytelling, role-playing and voting. Researchers with learning disabilities enable participants with learning disabilities to discuss difficult subjects. [ABSTRACT FROM AUTHOR]

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Background: To deliver optimal palliative care, a Care Pathway for Primary Palliative Care (CPPPC) was developed. This CPPPC was implemented by general practitioners (GPs) in territories of five Belgian palliative care networks (2014-2016). Belgian doctors have much therapeutic freedom, and do not commonly follow guidelines., Objectives: To assess how palliative care was provided by GPs before the CPPPC and its implementation project were presented publicly., Methods: Between 2013 and 2015, seven focus groups with GPs were conducted. Participants included 15 GPs in three French-speaking focus groups and 26 GPs in four Dutch-speaking focus groups, with diversity for age, gender, palliative care experience and practice context. Some GPs implemented the CPPPC later., Results: GPs considered each palliative care case unique and disliked strict protocols. However, they expressed a need for peer review and reflective frameworks. GPs felt it is important to identify palliative care patients 'timely', but found this difficult. Screening methods help, but are not widely used. GPs struggled most with identifying palliative care needs in non-oncological patients. Bad news breaking was considered difficult. Continuity of care was considered very important. However, advance care planning seemed more widely practised by Dutch-speaking GPs than by French-speaking GPs. The taboo of palliative care provoked emotional discussions., Conclusion: Palliative care frameworks which help GPs to deliver 'tailor-made' care have more chance to be adopted than strict protocols. GPs should be given education for bad news breaking. Palliative care and advance care planning practices differ locally: guideline dissemination plans should respect these local differences.

Background: Despite the risk for developing mental disorders, most 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 focussed 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 conceptualisation 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.

In 2015, euthanasia accounted for 4.5% of deaths in the Netherlands, of which 93% were performed by a GP. Historically, a conflict of physician's duties-to alleviate unbearable suffering and at the same time preserve the patient's life-is central to the justification of euthanasia practice in the Netherlands. However, there seems to be a shift towards a greater emphasis on the patient's autonomous wish as the primary basis for euthanasia. This shift has consequences for the role and interpretation of the physician's duties in end-of-life care. This paper aims to describe these developments in euthanasia practice and end-of-life decision-making. We describe important relevant developments and look into the role and the meaning of two dimensions of the concept of 'patient autonomy' regarding end-of-life decisions, in particular, the euthanasia request. We claim that the concept of autonomy 'as a right,' which can be distinguished from autonomy 'as an ideal,' narrows the physician's window of opportunity to offer end-of-life care other than euthanasia.

Background: General practice recognizes the existential dimension as an integral part of multidimensional patient care alongside the physical, psychological and social dimensions. However, general practitioners (GPs) report substantial barriers related to communication with patients about existential concerns., Objectives: To describe the development of the EMAP tool facilitating communication about existential problems and resources between GPs and patients with cancer., Methods: A mixed-methods design was chosen comprising a literature search, focus group interviews with GPs and patients (n = 55) and a two-round Delphi procedure initiated by an expert meeting with 14 experts from Denmark and Norway., Results: The development procedure resulted in a semi-structured tool containing suggestions for 10 main questions and 13 sub-questions grouped into four themes covering the existential dimension. The tool utilized the acronym and mnemonic EMAP (existential communication in general practice) indicating the intention of the tool: to provide a map of possible existential problems and resources that the GP and the patient can discuss to find points of reorientation in the patient's situation., Conclusion: This study resulted in a question tool that can serve as inspiration and help GPs when communicating with cancer patients about existential problems and resources. This tool may qualify GPs' assessment of existential distress, increase the patient's existential well-being and help deepen the GP-patient relationship.

Background: 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., Objectives: This study aims to translate the English RIPLS into Dutch and to test its reliability and validity., Methods: 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., Results: 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)., Conclusion: The Dutch translation of the RIPLS is now ready for comparative studies.