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Background: Broad consensus exists on the relevance of advance care planning in dementia. Although people with young-onset dementia and their family are hypothesized to have distinct needs and preferences in this area, they are hardly ever included in studies. Aim: We aim to explore the experiences with and views on advance care planning of people with young-onset dementia and their family caregivers. Design: A qualitative study was conducted, analyzing semi-structured interviews through the method of constant comparative analysis. Setting/participants: We included 10 people with young-onset dementia and 10 of their family caregivers in Flanders. Results: Participants lacked awareness about the concept of advance care planning, especially as a communication process. They had not or barely engaged in planning future care yet pointed out possible benefits of doing so. Initially, people with young-onset dementia and their caregivers directly associated advance care planning with planning for the actual end of life. When discussing advance care planning as a communication process, they paid ample attention to non-medical aspects and did not distinguish between medical, mental, and social health. Rather, respondents thought in the overarching framework of what is important to them now and in the future. Conclusions: Engagement in advance care planning might be hindered if it is too medicalized and exclusively patient-centered. To accommodate advance care planning to people with young-onset dementia’s and their caregivers’ needs, it should be presented and implemented as a holistic, flexible, and relational communication process. Policy and practice recommendations are provided on how to do so.

Background: The attention of healthcare professionals is directed mainly towards the recipients of care and often insufficiently towards family carers. However, an effective collaboration between professionals and family carers is vital to provide quality palliative and end-of-life care. Such collaboration is under-studied in a palliative care context. Aim: This study aimed to investigate how family carers of people who live at home with a life-limiting chronic illness experience and perceive collaboration with different healthcare professionals in the last phase of life. Design: Face-to-face semi-structured interviews were conducted with the primary family carers of people with a life-limiting chronic illness. Interpretative phenomenological analysis was used to analyse the data. Setting/participants: A heterogeneous sample of 30 family carers of people with cancer, heart failure or dementia was recruited through a variety of care providers and services, in order to reflect the heterogeneity of caregiving in serious illness. Results: Five main themes emerged from interpretative phenomenological analysis that describe the quality of the collaboration between family carers and professionals: respecting family carers both as someone with care needs and as a member of the care team; the continuous availability and accessibility of healthcare professionals; the provision of information and communication including family carer issues; the coordination of care between all parties and contextual factors. The dominant experience by family carers was one of missed opportunities across these themes. Conclusions: This qualitative study about the experiences and perceptions of family carers of people with a chronic life-limiting illness living at home regarding the collaboration with different healthcare providers in the last phase life, showed that family carers experience a lot of possibilities, but perceive missed opportunities as well, for healthcare professionals to effectively collaborate with them for palliative care.

Context. Although conversations about future medical treatment and end-of-life care are considered to be important, ethnic minorities are much less engaged in advance care planning (ACP). Objectives. To explore ACP knowledge, experiences, views, facilitators, and barriers among older adults of Turkish origin in Belgium. Methods. This qualitative study was based on constant comparative analysis of semistructured interview content. Participants were 33 older adults (aged 65-84 years; mean, 71.7 years; median, 74.5 years) of Turkish origin living in Belgium. Results. Despite unfamiliarity with the term ACP in this sample, several participants had engaged in some ACP behaviors. Respondents considered ACP to be useful and were ready to engage in conversations about it. The most commonly mentioned facilitator was the provision of tailored information about ACP. Other facilitators included concerns about future care needs, increasing awareness among respondents' children about the advantages of ACP, and respondents' desire to avoid "burdening"their children. The most commonly mentioned barrier was respondents' lack of knowledge about ACP. Other barriers were language issues, a lack of urgency about ACP discussion, reliance on familial support, and older adults' fear of triggering negative emotions in themselves and their children. Conclusions. The provision of tailored information about ACP to older adults of Turkish origin in Belgium and the promotion of awareness about the importance of ACP among their children (when patients desire), as well as the use of professional interpreters, could facilitate ACP engagement in this population. (C) 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

BackgroundTo support the early integration of palliative home care (PHC) in cancer treatment, we developed the EPHECT intervention and pilot tested it with 30 advanced cancer patients in Belgium using a pre post design with no control group. We aim to determine the feasibility, acceptability and perceived effectiveness of the EPHECT intervention.MethodsInterviews with patients (n = 16 of which 11 dyadic with family caregivers), oncologists and GPs (n = 11) and a focus group with the PHC team. We further analyzed the study materials and logbooks of the PHC team (n = 8). Preliminary effectiveness was assessed with questionnaires EORTC QLQ C-30, HADS and FAMCARE and were filled in at baseline and 12, 18 and 24 weeks.ResultsIn the interviews after the intervention period, patients reported feelings of safety and control and an optimized quality of life. The PHC team could focus on more than symptom management because they were introduced earlier in the trajectory of the patient. Telephone-based contact appeared to be insufficient to support interprofessional collaboration. Furthermore, some family caregivers reported that the nurse of the PHC team was focused little on them.ConclusionNurses of PHC teams are able to deliver early palliative care to advanced cancer patients. However, more attention needs to be given to family caregivers as caregiver and client. Furthermore, the home visits by the PHC team have to be further evaluated and adapted. Lastly, professionals have to find a more efficient way to discuss future care.

Background: The significance of advance care planning in dementia is widely acknowledged. Despite the suggestion that younger people with dementia and their family might have distinct needs and preferences in this area, studies on advance care planning in young-onset dementia are absent. Aim: We aim to explore (1) whether family caregivers had already engaged in advance care planning with patients and/ or professionals and the accompanying reasons and (2) family caregivers’ preferences for how to ideally engage in the process with patients, family and professionals. Design: A qualitative study was conducted: we analysed semi-structured interviews ( n = 15) through the method of constant comparative analysis. Setting/participants: We included Flemish family caregivers of persons with young-onset dementia. Results: Plans for the future typically concerned non-medical affairs. Participants’ limited engagement in advance care planning was clarified through several reasons: not considering it useful, hindering patient behaviour, adopting a day-to-day attitude, caregivers emotionally protecting themselves and uncertainty about patients’ cognitive competence. However, endorsement for advance care planning showed from respondents’ preferences that it should be initiated timely, by a third party, and emphasize patients’ remaining capacities. Finally, the need for information and high-quality care emerged. Conclusion: A gap of knowledge, of information and in care intertwiningly hinder advance care planning. In young-onset dementia, engaging in advance care planning is not an option equally accessible as not doing so. Policy makers, institutions and professionals could reflect on their responsibility in providing these patients and caregivers an actual choice to engage in advance care planning or not.

IntroductionAmyotrophic lateral sclerosis (ALS) is an incurable motor neuron degenerative disease that has rapid progression and is associated with cognitive impairment. For people with ALS (pALS) and their family carers, advance care planning (ACP) is beneficial, as it can lead to feelings of control/relief and refusal of unwanted treatments. However, evidence concerning the experiences and preferences regarding ACP of pALS and their family carers, especially when their symptoms progress, is scarce. This article describes the protocol for a qualitative longitudinal study that aims to explore: (1) the experiences with ACP and the preferences for future care and treatment of pALS and their family carers and (2) how these experiences and preferences change over time.Methods and analysisA qualitative, longitudinal, multiperspective design. A total of eight to nine dyads (pALS and their family carers) will be recruited, and semistructured interviews administered every 3 months over a 9-month period. Qualitative longitudinal analysis involves content analysis via in-depth reading, followed by a two-step timeline method to describe changes in experiences and preferences within and across participants.Ethics and disseminationThis protocol has been approved by the central ethical committee of the University Hospital of Brussels, and local ethical committees of the other participating hospitals (B.U.N. B1432020000128). The results will be disseminated via the research group’s (endoflifecare.be) website, social media and newsletter and via presentations at national and international scientific conferences.

Background: To date, no randomised controlled trials on the integration of specialised palliative home care into oncology care have been identified. Information on whether existing models of integrated care are applicable to the home care system and how working procedures and skills of the palliative care teams might require adaptation is missing. Aim: To gain insight into differences between early and late involvement and the effect on existing working procedures and skills as perceived by palliative home care teams. Design: Qualitative study – focus group interviews. Setting/participants: Six palliative home care teams in Flanders, Belgium. Participants included physicians, nurses and psychologists. Results: Differences were found concerning (1) reasons for initiation, (2) planning of care process, (3) focus on future goals versus problems, (4) opportunity to provide holistic care, (5) empowerment of patients and (6) empowerment of professional caregivers. A shift from a medical approach to a more holistic approach is the most noticeable. Being involved earlier also results in a more structured follow-up and in empowering the patient to be part of the decision-making process. Early involvement creates the need for transmural collaboration, which leads to the teams taking on more supporting and coordinating tasks. Discussion: Being involved earlier leads to different tasks and working procedures and to the need for transmural collaboration. Future research might focus on the development of an intervention model for the early integration of palliative home care into oncology care. To develop this model, components of existing models might need to be adapted or extended.

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.

Contains fulltext : 221013.pdf (Publisher’s version ) (Closed access) OBJECTIVES: Advance care planning in young-onset dementia largely remains a blind spot within current literature. This study aimed to explore the engagement in and the conceptualization of advance care planning from the perspective of family caregivers of persons with young-onset dementia and to identify potential similarities and differences in this area between American and Belgian persons with young-onset dementia and their family caregivers. DESIGN: An exploratory qualitative study. SETTING AND PARTICIPANTS: We purposively sampled adult family caregivers of persons with young-onset dementia; our respondents were 13 American and 15 Belgian caregivers with varying familial relationships to the patient. METHODS: We conducted 28 semi-structured interviews, using the same interview guide for American and Belgian respondents. Verbatim transcripts were analysed through the method of constant comparative analysis. RESULTS: Important similarities between American and Belgian respondents were restricted knowledge of advance care planning, limited communication about advance directives, and their recommendation for professionals to timely initiate advance care planning. Major differences were attention paid to those end-of-life decisions depicted in the legislature of their respective countries, American caregivers placed higher emphasis on financial planning than their Belgian peers, and, in the case of consulting professionals for advance directives, American caregivers turned to lawyers, whereas Belgian caregivers relied on physicians. CONCLUSIONS AND IMPLICATIONS: Specific nuances and challenges in terms of advance care planning in young-onset dementia arise from a particular societal and legal context on the one hand, and from patients' and caregivers' younger age on the other. Professionals' awareness of and responsiveness to these specificities could facilitate the advance care planning process. Based on our interpretation of results, several recommendations for practice and policy are made.

Objectives Palliative care is still often involved late in the disease trajectory. Recently, some studies have explored the barriers to early integration of PC in the hospital setting. Because palliative care home care (PHC) is organised differently compared with PC in a hospital setting, the identification of barriers to the early integration of PHC is needed. Methods Six focus groups were held with PHC teams in Flanders, Belgium. Discussions were transcribed verbatim and analysed using constant comparative analysis. Results Our findings confirm many barriers found in previous studies, such as the lack of financial resources and the perception of PC as terminal care. Oncologists' lack of knowledge about the content and role of PC is also confirmed. Furthermore, professional caregivers working in the home context are lacking information on oncology therapies necessary to provide optimal PC. A barrier for the home context is the discontinuity of care, as a result of a lack of communicational structure and a lack of central coordination. Conclusion The results contribute to a better understanding of the factors hindering the provision of PHC alongside oncology care. For the home context, transmural discontinuity of care seems to be an important additional barrier.

The early integration of specialist palliative care has been shown to benefit the quality of life of patients with advanced cancer. In order to explore whether other seriously ill people and people at even earlier phases would also benefit from early palliative care, we conducted 18 qualitative interviews with people having cancer, chronic obstructive lung disease, heart failure, or dementia at different phases of the illness trajectory about how they experienced care needs related to their disease from diagnosis onward. Respondents experienced needs within the different domains of palliative care at different stages of the illness and different illness types or duration of the illness. This study contributes to the understanding of primary care needs of patients for whom palliative care (not necessarily specialized palliative care) could be beneficial.

It has been suggested that end-of-life care for older people is currently inadequately adapted to their needs. Engaging early in the exploration of their wishes and preferences is of particular importance in this population. Since communication can be difficult for patients at the end of life, especially for those suffering from cognitive deficiencies such as dementia, it is important to become aware of wishes or preferences regarding care in advance and engage in advance care planning (ACP). ACP discussions can play a major role in facilitating adaptation to illness realities by providing patients with information about diagnosis and prognosis, by leading to appropriate decision-making, by alleviating anxiety, and by improving quality of life throughout the trajectory of the illness. ACP initially began as a movement to establish advance directives (ADs), but we have seen a shift to more emphasis being put on the process of communication and interaction.

BACKGROUND: The long-term and often lifelong relationship of general practitioners (GPs) with their patients is considered to make them the ideal initiators of advance care planning (ACP). However, in general the incidence of ACP discussions is low and ACP seems to occur more often for cancer patients than for those with dementia or heart failure. OBJECTIVE: To identify the barriers, from GPs' perspective, to initiating ACP and to gain insight into any differences in barriers between the trajectories of patients with cancer, heart failure and dementia. METHOD: Five focus groups were held with GPs (n = 36) in Flanders, Belgium. The focus group discussions were transcribed verbatim and analyzed using the method of constant comparative analysis. RESULTS: THREE TYPES OF BARRIERS WERE DISTINGUISHED: barriers relating to the GP, to the patient and family and to the health care system. In cancer patients, a GP's lack of knowledge about treatment options and the lack of structural collaboration between the GP and specialist were expressed as barriers. Barriers that occured more often with heart failure and dementia were the lack of GP familiarity with the terminal phase, the lack of key moments to initiate ACP, the patient's lack of awareness of their diagnosis and prognosis and the fact that patients did not often initiate such discussions themselves. The future lack of decision-making capacity of dementia patients was reported by the GPs as a specific barrier for the initiation of ACP. CONCLUSION: The results of our study contribute to a better understanding of the factors hindering GPs in initiating ACP. Multiple barriers need to be overcome, of which many can be addressed through the development of practical guidelines and educational interventions. ispartof: PLoS One vol:9 issue:1 ispartof: location:United States status: published

Background: There is a growing recognition that a palliative care approach should be initiated early and not just in the terminal phase for patients with life-limiting diseases. Family physicians then play a central role in identifying and managing palliative care needs, but appear to not identify them accurately or in a timely manner. Aim: To explore the barriers to and facilitators of the early identification by family physicians of the palliative care needs. Design, setting, and participants: Six focus groups (four with family physicians, n = 20, and two with community nurses, n = 12) and 18 interviews with patients with cancer, chronic obstructive pulmonary disease, heart failure, and dementia were held. Thematic analysis was used to derive themes that covered barriers and facilitators. Results: Key barriers and facilitators found relate to communication styles, the perceived role of a family physician, and continuity of care. Family physicians do not systematically assess non-acute care needs, and patients do not mention them or try to mask them from the family physician. This is embedded within a predominant perception among patients, nurses, and family physicians of the family physician as the person to appeal to in acute and standard follow-up situations rather than for palliative care needs. Family physicians also seemed to pay more often attention to palliative care needs of patients in a terminal phase. Conclusion: The current practice of palliative care in Belgium is far from the presently considered ideal palliative care approaches. Facilitators such as proactive communication and communication tools could contribute to the development of guidelines for family physicians and policymakers in primary care.

Objective The aim of this systematic review is to identify the perceived factors hindering or facilitating GPs in engaging in advance care planning (ACP) with their patients about care at the end of life. Design Studies from 1990 to 2011 were found in four electronic databases (PubMed, CINAHL, EMBASE, PsycINFO); by contacting first authors of included studies and key experts; and searching through relevant journals and reference lists. Studies were screened, graded for quality, and analysed independently by two authors; those reporting the perception by GPs of barriers and facilitators to engagement in ACP were included. Results Eight qualitative studies and seven cross-sectional studies were included for data extraction. All barriers and facilitators identified were categorized as GP characteristics, perceived patient factors, or health care system characteristics. Stronger evidence was found for the following barriers: lack of skills to deal with patients’ vague requests, difficulties with defining the right moment, the attitude that it is the patient who should initiate ACP, and fear of depriving patients of hope. Stronger evidence was found for the following facilitators: accumulated skills, the ability to foresee health problems in the future, skills to respond to a patient's initiation of ACP, personal convictions about who to involve in ACP, and a longstanding patient–GP relationship and the home setting. Conclusion Initiation of ACP in general practice may be improved by targeting the GPs’ skills, attitudes, and beliefs but changes in health care organization and financing could also contribute.

Objectives : To explore how GPs conceptualise advance care planning (ACP), based on their experiences with ACP in their practice. Methods : Five focus groups were held with 36 GPs. Discussions were analysed using a constant comparative method. Results : Four overarching themes in the conceptualisations of ACP were discerned: (1) the organisation of professional care required to meet patients' needs, (2) the process of preparing for death and discussing palliative care options, (3) the discussion of care goals and treatment decisions, (4) the completion of advance directives. Within these themes, ACP was both conceptualised in terms of content of ACP and/or in terms of tasks for the GP. A specific task that was mentioned throughout the discussion of the four different themes was (5) the task of actively initiating ACP by the GP versus passively waiting for patients' initiation. Conclusions : This study illustrates that GPs have varying conceptualisations of ACP, of which some are more limited to specific aspects of ACP. A shared conceptualisation and agreement on the purpose and goals of ACP is needed to ensure successful implementation, as well as a systematic integration of ACP in routine practice that could lead to a better uptake of all the important elements of ACP.

Background Although general practitioners (GPs) are well placed to initiate advance care planning (ACP) in a timely manner, many find it difficult. Training programmes can improve their skills in performing this task but need to draw on GPs’ previous knowledge and experience to be effective. Aim To explore how GPs conceptualise ACP, based on their experiences with ACP in their practice. Methods This study, using a qualitative study design, was conducted with GPs in Belgium. Five focus groups were held with 36 GPs. Discussions were analysed using a constant comparative method. Results With regard to content of discussions, ACP was conceptualised as the organisation of professional care required to meet patients’ needs, bad news conversations, choices of treatment and types of care for the patient, and the completion of documents. With regard to tasks for the GP, ACP was considered in terms of exploring patients’ vague preferences, coordinating care to address patients’ and families’ needs, actively initiating ACP and providing comfort when discussing palliative care with terminal patients. These conceptualisations could occur simultaneously in the narrative of a GP, however some only used one of the conceptualisations to present ACP. Discussion This study illustrates that GPs have varying conceptualisations of ACP, of which some are more limited to specific aspects of ACP. Conclusion Training efforts building further on GPs’ conceptualisation of ACP could improve their skills and knowledge of the ACP process, and lead to a better uptake of all the important elements of ACP discussions.

Despite the widespread use of prenatal screening, women's perceptions and experiences of prenatal care have only recently been addressed in scientific research.1 Several studies show that perceptions of and participation in prenatal testing can be quite different among women of different ethnic, cultural and social backgrounds.2 3 Especially little is known about how Muslim women experience prenatal care in a Western society.4 Our aim was to examine how these experiences and perceptions differ from the experiences and perceptions of non-Muslim women in Flanders and Brussels in Belgium. Semi-structured interviews were conducted with Muslim and non-Muslim women. The respondents for this qualitative study were recruited through the maternity departments of three university hospitals and one general hospital. The study was approved by …