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Background: Previous studies in somatic health care revealed that patients find nurse practitioners reliable, helpful, and empathic and feel empowered, at peace, and in control when cared for by nurse practitioners (NPs). Only one study so far considered what value people with severe mental illness (SMI) attached to treatment by a psychiatric mental health nurse practitioner (PMHNP). Purpose: To explore what meaning people with SMI associate with the care provided by a PMHNP. Methodology: A qualitative study from a phenomenological perspective was conducted, in which 32 people with SMI were interviewed. Data were analyzed using Colaizzi's seven-step method and the metaphor identification procedure (MIP). Results: Eight fundamental themes emerged: (1) impact of the PMHNP on well-being, (2) feeling connected with, and (3) acknowledged by the PMHNP; (4) the PMHNP's care (not) needed; (5) perception of the PMHNP as a person; (6) shared decision-making; (7) PMHNP's expertise; and (8) flexibility of contact with the PMHNP. MIP analysis revealed six metaphors: PMHNP is a travel aid, means trust, is a combat unit, means hope, is an exhaust valve, and a helpdesk/encyclopedia. Conclusions: The interviewees highly appreciated the treatment and support by the PMHNP for the impact on their well-being. Thanks to the connection with and recognition by the PMHNP, they felt empowered, human, and understood. Challenged by the PMHNP, they focused on possibilities to strengthen self-confidence and self-acceptance. Implications: For further positioning of and education for PMHNPs, it is recommended to consider the meaning people with SMI associate with treatment and support by a PMHNP.

AimsSpirituality can be important in adjusting to the experience of cancer and its medical treatment. Since nurses have frequent contact with patients, they seem to have a unique role in providing spiritual care. Nurses consider spiritual care important; however, little is known about how patients in a curative setting experience and value spiritual care. Therefore, this study aimed to give insight into patients’ experiences with and opinions about spiritual care as provided by nurses in curative cancer care.MethodsThis is a national, multicentre mixed‐methods study, combining a quantitative approach using questionnaires (n = 62) and a qualitative analysis of semi‐structured interviews (n = 61). Nonparametric tests were used for quantitative data, and qualitative data were analysed inductively.FindingsMost patients rarely received spiritual care by nurses. If spiritual care was provided, it mainly consisted of noticing problems and referring to other professionals. This appeared to be dependent on certain ‘triggers’, such as age. Structural discussions on spirituality with a nurse were experienced rarely. This was explained by, among other factors, the hospital setting. Yet, the majority (79%) of patients found the attention to spirituality sufficient or very good. Furthermore, a majority (58%) viewed spiritual care as a nursing task: nurses should notice spiritual problems and refer to other professionals, though extensively discussing patients’ spirituality was neither considered nurses’ task nor capability.ConclusionsAttention to spiritual care in a curative setting, though not so much desired by most patients, should be pursued, because of its importance in performing person‐centred nursing care and its positive impact on patients’ health. By training nurses in offering spiritual care in proactive and ‘nonactive’ (accepting) ways, spiritual care could be structurally offered in clinical practice in personalised forms. Since younger and less spiritual patients are not much satisfied with spiritual care by nurses, they need special attention.

Background: Palliative care for persons with Parkinson’s disease (PD) is developing. However, little is known about the experiences of patients with PD in the palliative phase and of their family caregivers. Objective: To explore needs of patients with PD in the palliative phase and of their family caregivers. Methods: A mixed methods case study design. Health care professionals included patients for whom the answer on the question “Would you be surprised if this patient died in the next 12 months?” was negative. At baseline, and after six and twelve months, we conducted semi-structured interviews with patients and caregivers. Participants completed questionnaires on quality of life, disease burden, caregiver burden, grief, and positive aspects of caregiving. We analyzed quantitative data using descriptive statistics, while we used thematic analysis for qualitative data. Results: Ten patients and eight family caregivers participated, of whom five patients died during the study period. While the quantitative data reflected a moderate disease burden, the qualitative findings indicated a higher disease burden. Longitudinal results showed small differences and changes in time. Patients reported a diverse range of symptoms, such as fatigue, immobility, cognitive changes, and hallucinations, which had a tremendous impact on their lives. Nevertheless, they rated their overall quality of life as moderate to positive. Family caregivers gradually learned to cope with difficult situations such delirium, fluctuations in functioning and hallucinations. They had great expertise in caring for the person with PD but did not automatically share this with health care professionals. Patients sensed a lack of time to discuss their complex needs with clinicians. Furthermore, palliative care was rarely discussed, and none of these patients had been referred to specialist palliative care services. Conclusion: Patients with PD experienced many difficulties in daily living. Patients seems to adapt to living with PD as they rated their quality of life as moderate to positive. Family caregivers became experts in the care for their loved one, but often learned on their own. An early implementation of the palliative care approach can be beneficial in addressing the needs of patients with PD and their family caregivers.

Metaphor identification in order to describe what meaning patients associate with their experiences with a nurse practitioner To explore interpretations and meanings of individuals’ experiences, it is normal to conduct open in-depth interviews. Asking participants to express their meanings and beliefs through metaphors or other symbolic representations can enhance insight in their experiences. Also it will support those who find it difficult to describe their feelings in words alone. This article describes some methodological considerations, the process of using and analyzing metaphors, and the identified metaphors. The article ends by reflecting on the impact of using metaphors as a way to collect experiences, both from the researcher and participant perspective. Furthermore, we recommend using metaphors or other symbolic representations in future research studying lived experiences and meanings participants associate with these experiences.

Background and purpose Haptotherapy is a type of mind-body therapy that makes use of affective touch. This study aims to provide insights in reasons for haptotherapy for patients with cancer, and in experiences of haptotherapists with these patients. Materials and methods In a cross-sectional study, a survey was conducted among 536 Dutch haptotherapists. Multiple-choice and open-ended questions were analyzed both quantitatively and qualitatively. Results Of 272 (50.7%) responding haptotherapists, 167 (61.5%) had experience with treating people with cancer. Most frequently, combinations of emotional problems and a disturbed body experience were reported as reasons for haptotherapy. Haptotherapists emphasized the need for affective touch to restore patients’ body connection. Conclusion Two-thirds of the respondents treat patients with cancer, addressing the interaction of body and mind. Reasons for consultation cover a wide range of problems in multiple dimensions, in which a disturbed body experience in combination with emotional problems is mentioned most often.

BackgroundParkinson's disease (PD) is a progressive degenerative disease without curative treatment perspectives. Even when palliative care for people with PD seems to be beneficial, the need for palliative care is often not timely recognized.AimOur aim was to develop a tool that can help healthcare professionals in timely identifying palliative care needs in people with PD.DesignWe used a mixed-methods design, including individual and focus group interviews and a three-round modified Delphi study with healthcare professionals from a multidisciplinary field.ResultsData from the interviews suggested two distinct moments in the progressive PD trajectory: 1) an ultimate moment to initiate Advance Care Planning (ACP); and 2) the actual start of the palliative phase. During the Delphi process, six indicators for ACP were identified, such as presence of frequent falls and first unplanned hospital admission. The start of the palliative phase involved four indicators: 1) personal goals have started to focus on maximization of comfort; 2) care needs have changed; 3) PD drug treatment has become less effective or an increasingly complex regime of drug treatments is needed; and 4) specific PD-symptoms or complications have appeared, such as significant weight loss, recurrent infections, or progressive dysphagia. Indicators for both moments are included in the RADboud indicators for PAlliative Care Needs in Parkinson's Disease (RADPAC-PD) tool.ConclusionThe RADPAC-PD may support healthcare professionals in timely initiating palliative care for persons with PD. Identification of one or more indicators can mark the need for ACP or the palliative phase. We expect that applying the RADPAC-PD, for example on an annual basis throughout the PD trajectory, can facilitate identification of the palliative phase in PD patients in daily practice. However, further prospective research is needed on the implementation of the RADPAC-PD.

Background: Research requires high-quality ethical and governance scrutiny and approval. However, when research is conducted across different countries, this can cause challenges due to the differing ethico-legal framework requirements of ethical boards. There is no specific guidance for research which does not involve non-medicinal products. Aim: To describe and address differences in ethical and research governance procedures applied by research ethics committees for non-pharmaceutical palliative care studies including adult participants in collaborative European studies. Design: An online survey analysed using descriptive statistics. Setting/participants: Eighteen principal investigators in 11 countries conducting one of three European-funded studies. Results: There was variation in practice including whether ethical approval was required. The time to gain full approvals differed with the United Kingdom having governance procedures that took the longest time. Written consent was not required in all countries nor were data safety monitoring committees for trials. There were additional differences in relation to other data management issues. Conclusion: Researchers need to take the differences in research approval procedures into account when planning studies. Future research is needed to establish European-wide recommendations for policy and practice that dovetail ethical procedures and enhance transnational research collaborations.

Background There is little information about how healthcare professionals feel about providing palliative care for patients with a substance use disorder (SUD). Therefore, this study aims to explore: 1) the problems and needs experienced by healthcare professionals, volunteers and experts-by-experience (HCP/VE) during their work with patients with SUD in a palliative care trajectory and; 2) to make suggestions for improvements using the quality of care model by Donabedian (Structure, Process, Outcome). Methods A qualitative study was conducted, consisting of six focus group interviews which consisted of HCP/VE working with patients with SUD in a palliative care phase. At the end of the focus group interviews, participants structured and summarized their experiences within a Strengths, Weaknesses, Opportunities and Threats (SWOT) framework. Interview transcripts (other than the SWOT) were analysed by the researchers following procedures from the Grounded Theory Approach (‘Grounded Theory Lite’). SWOT-findings were not subjected to in-depth analysis. Results HCP/VE stated that within the Structure of care, care networks are fragmented and HCP/VE often lack knowledge about patients’ multiplicity of problems and the time to unravel these. Communication with this patient group appears limited. The actual care-giving Process requires HCP/VE a lot of creativity and time spent seeking for cooperation with other caregivers and appropriate care settings. The latter is often hindered by stigma. Since no formalized knowledge is available, care-delivery is often exclusively experience-based. Pain-medication is often ineffective due to active substance use. Finally, several Outcomes were brought forward: Firstly, a palliative care phase is often identified only at a late stage. Secondly, education and a (mobile) team of expertise are desired. Thirdly, care for the caregivers themselves is often de-prioritized. Conclusions Better integration and collaboration between the different professionals with extensive experience in addiction, palliative and general curative care is imperative to assure good palliative care for patients with SUD. Currently, the resources for this care appear to be insufficient. Development of an educational program and social mapping may be the first steps in improving palliative care for patients with severe SUD.

Background: Family caregivers provide the majority of care for people with Parkinson’s disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life. Objective: We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD. Methods: Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed. Results: We identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD. 2) Healthcare professionals do not always know what PD really means: most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one’s care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients’ preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided. Conclusion: These findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals’ awareness of family and bereaved caregivers’ needs may mitigate these long-term detrimental effects.

Background A previous study found that care provided by a nurse practitioner (NP) during oncological or palliative care was highly regarded. These patients, however, were considered a special population due to suffering from life-threatening illnesses. It remains unclear whether the results are transferable to patients with chronic conditions. Patient's perceptions of the quality of NP care have reflected that it equals or exceeds that of physicians, but the root causes of these remarks remain unclear. Purpose To describe the difference in perception of NP care by patients suffering from chronic heart failure (CHF) or inflammatory bowel disease (IBD) in contrast with NP oncological or palliative care. Methodological orientation A qualitative study from a phenomenological perspective was conducted. Data were analyzed using Colaizzi's seven-step method and the Metaphor Identification Procedure. Sample In 2018 and 2019, 16 outpatients receiving CHF or IBD care were interviewed. Conclusions Although chronic and life-threatening diseases may differentiate patients' perspectives, it can be generally stated that patients value NPs to be reliable, helpful, and empathic. Patients feel empowered, at peace and in control thanks to integrated care by dedicated experts. Implications for practice Outpatients highly appreciate the "communicator role" and "skilled companionship" performed by NPs, to fulfill their needs for attention to the "complete picture." Therefore, further consideration of these competencies is recommended.

Aims: We aimed to investigate (a) the association between body mass index (BMI) and self-rated health (SRH) and (b) BMI’s predicted value for SRH within a representative population in the Skaraborg Project. Methods: This was a longitudinal observational study. A random population of 2816 individuals were included in the study between 2002 and 2005, and a representative sample of these individuals were invited consecutively for a follow-up visit between 2012 and 2014. At follow-up, data from 1327 participants were collected concerning anthropometric variables, blood samples and validated questionnaires regarding lifestyle factors. Results: A significant inverse association was observed between BMI and SRH both at baseline and at follow-up, with all p-values for trend being ⩽0.001 in both men and women. This association was observed even after adjusting for confounders such as co-morbidity, age, sex, education, marital status and lifestyle factors. In addition, the longitudinal analyses showed that BMI at baseline was inversely associated with SRH at follow-up in both sexes (odds ratio (OR)=1.1, confidence interval (CI) 1.02–1.16, p=0.017 in men; and OR=1.1, CI 1.04–1.14, p=0.001 in women). These findings remained in participants whose weight increased ( p=0.022) or was stable ( p=0.004), while it was not seen in individuals who lost weight over the years ( p=0.340). Conclusions: SRH is inversely associated with BMI in Swedish men and women. High BMI predicted low SRH from a longitudinal perspective, independent of co-morbidities, except for individuals who lost weight over the years. This knowledge emphasises the importance of an understanding and empathetic attitude towards these individuals.

Background Timely identifying people with intellectual disabilities in need of palliative care is important. Therefore, we developed PALLI: a screening tool for deteriorating health, indicative of a limited life expectancy. Here, we aimed to describe development of PALLI and to explore its applicability. Method We used a five-stage mixed-methods procedure to develop PALLI based on knowledge from practice. For exploring applicability, professionals caring for people with intellectual disabilities completed PALLI for 185 people with intellectual disabilities and provided information on applicability after 5-6 months. Results The final version of PALLI included 39 questions relevant for people with intellectual disabilities. Applicability was adequate: Most professionals found PALLI relevant and reported no ambiguous questions. Added value of PALLI was reflecting on and becoming aware of the process of decline in health. Conclusions PALLI shows promising applicability and has potential as a tool for timely identifying people with intellectual disabilities who may benefit from palliative care.

Background: Family carers manage a wide range of responsibilities in the lives and care of patients receiving palliative care. They fulfil multiple roles and perform activities within different settings. This has immediate consequences on family carers' every-day lives. According to literature, family carers in palliative care are both part of the formal and informal care network, but also persons in need of support. This article aims to investigate 1) burdens and rewards associated with family caregiving and 2) what family carers find helpful in their contact with professionals from integrated palliative care initiatives (IPC-i) and other services.Methods: Family carers looking after patients with cancer, chronic obstructive pulmonary disease or chronic heart failure were purposefully recruited at 22 IPC-i in Belgium, Germany, Hungary, the Netherlands and the United Kingdom in the course of the project "Patient-centred palliative care pathways in advanced cancer and chronic disease" (InSup-C).Semi-structured interviews (n = 156) and 87 quantitative questionnaires (CRA, POS, CANHELP Lite) were conducted with family carers. Interviews were analysed with transnationally agreed thematic codes (MAXQDA or NVivo). Statistical tests (SPSS) were carried out in accordance with the characteristic value of the items and distributions.Results: On average, quantitative data showed moderate burden, but the qualitative findings indicated that this burden might be underrated. There is some evidence that IPC-i with well-developed professional care networks and communication systems relieved family carers' burden by direct and indirect interventions; e.g. provision of night shift nurses or psychological support. Needs of family carers were similar in all participating countries. However, in all countries IPC-i mostly offered one-off events for family carers, lacking systematic or institutionalised support structures.Conclusions: Data suggest that, most IPC-i did not pay enough attention to the needs of most family carers, and did not offer proactive care and access to supportive resources to them (e.g. training, respite care, access to resources). We recommend recognizing family carers as part of the 'unit of care' and partner in caregiving, to improve their knowledge about, and access to, and the support available.

Aims and objectives To explore what meaning patients associate with their experiences with a nurse practitioner (NP) in oncological or palliative care. Background Care provided by NPs results in high patient satisfaction, mostly related to the assurance of continuity of care, and to receiving information and advice on coping with the disease. Research shows that health care provided by NPs equals the quality of care provided by physicians. Patients may be even more satisfied with care provided by NPs. Because patients' views have only been examined quantitatively, underlying experiences and meanings remain unclear. Design A qualitative study from a phenomenological perspective. Methods In 2017, seventeen outpatients aged 45-79 years, receiving oncological or palliative care, were interviewed in depth. Data were analysed by Colaizzi's seven-step method and by the Metaphor Identification Procedure. Results Six fundamental themes emerged: the NP as a human (1) and as a professional (2), the NP providing care (3) and cure (4), NPs organising patient care (5) and the impact on patient's well-being (6). MIP analysis revealed six metaphors: NP means trust; is a travel aid; is a combat unit; is a chain; is a signpost; and is a technician. Conclusions NPs mean a lot to patients. NPs are valued as reliable, helpful and empathic. Patients feel empowered, at peace and in control as a result of the support, guidance and attention to them as a person as well as to aspects of the disease. Providing expert, integrated care makes patients feel safe and embraced in the NP's expertise. Relevance to clinical practice This qualitative insight into patients' experiences will contribute to the body of knowledge on patients' perceptions of the treatment and support provided by NPs. It adds to the further development of the NPs' profession and education.

Item does not contain fulltext AIM: To gain insight into the quantity and quality of spiritual care provided by nurses in curative cancer care, from the perspectives of both patients and nurses. BACKGROUND: Cancer causes patients to suffer from diverse symptoms related to their illness. Nurses play an important role in the care for people with cancer. Next to paying attention to physical and psychosocial needs, caring for spiritual needs of patients also belongs to good nursing. Most of the research concerning spirituality and spiritual care in relation to cancer has focused on palliative care. DESIGN: A mixed methods design will be used in two sub-phases. First, we will conduct semi-structured interviews with 72-90 patients coming from nine hospitals. Subsequently, approximately the same number of nurses working on oncology wards of these hospitals will be interviewed. METHODS: We meticulously composed both interview guides so that only near the end of the interview explicit terms like spirituality and spiritual care are explicitly mentioned. Until that point, we will use other words to define the concepts. Next to the interviews, demographics, answers to some statements and several questionnaires will be gathered. Content analysis supported by DEDOOSE will be used to answer the research questions. DISCUSSION: The insight we will gain in this study enables us to compare experiences from the perspective of both patients and nurses. This can also provide us with suggestions for the improvement of nursing care for people with cancer who are treated with curative intent, a topic until now hardly addressed.

PALLI (PALliatieve zorg Leren Identificeren) is een checklist waarmee zorgverleners van mensen met een verstandelijke beperking geholpen worden om de palliatieve zorgfase te identificeren bij hun clienten. Nu het haalbaarheids- en valideringsonderzoek is afgerond, is het tijd om PALLI te implementeren en te gebruiken in zorgorganisaties voor mensen met een verstandelijke beperking. In dit artikel laten we hier twee voorbeelden van zien.

ObjectivesTo explore perceptions, experiences and expectations with respect to palliative care of patients with severe mental illness (SMI) and an incurable, life-limiting chronic illness.MethodsFace-to-face semistructured interviews were conducted with 12 patients (10 of them living in a mental healthcare institution) with severe mental and physical health issues in the Netherlands. A semistructured interview guide was used to elicit perceptions of, experiences with and expectations regarding palliative care. Data were analysed using inductive content analysis.ResultsAnalysis of the data revealed eight categories: perceptions on health and health issues, coping with illness and symptoms, experiences with and wishes for current healthcare, contact with relatives and coresidents, experiences with end of life of relatives and coresidents, willingness to discuss end of life and death, wishes and expectations regarding one’s own end of life and practical aspects relating to matters after death. These categories were clustered into two separate themes: current situation and anticipation of end of life. Interviewees with SMI appeared not accustomed to communicate about end-of-life issues, death and dying due to their life-threatening illness. They tended to discuss only their current situation and, after further exploration of the researcher, the terminal phase of life. They seemed not engaged in their future palliative care planning.ConclusionsFindings of this study highlight inadequacies in advance care planning for patients with SMI. Results suggest using values, current and near wishes, and needs as a starting point for establishing a gradual discussion concerning goals and preferences for future medical and mental treatment and care.

Background Parkinson’s disease (PD) is a chronic and neurodegenerative disease associated with a wide variety of symptoms. The risk of complications increases with progression of the disease. These complications have a tremendous impact on the quality of life of people with PD. The aim of this study was to examine health care professionals’ experiences of potential barriers and facilitators in providing palliative care for people with PD in the Netherlands. Methods This was a qualitative descriptive study. The data were collected from 10 individual in-depth interviews and three focus groups (n = 29) with health care professionals. Health care professionals were selected based on a positive answer to the question: “In the past 2 years, did you treat or support a person with PD who subsequently died?” The data were analyzed by thematic text analysis. Results Health care professionals supported the development of a palliative care system for PD but needed to better understand the essence of palliative care. In daily practice, they struggled to identify persons’ needs due to interfering PD-specific symptoms such as cognitive decline and communication deficits. Timely addressing the personal preferences for providing palliative care was identified as an important facilitator. Health care professionals acknowledged being aware of their lack of knowledge and of their little competence in managing complex PD. Findings indicate a perceived lack of care continuity, fragmentation of services, time pressure and information discontinuity. Conclusions Health care professionals experienced several facilitators and barriers to the provision of palliative care to people with PD. There is a need to improve the knowledge on complex PD and the continuity of information, as well as optimize coordination and deliver care based on a persons’ preferences. Additional training can help to become more knowledgeable and confident. Electronic supplementary material The online version of this article (10.1186/s12904-019-0441-6) contains supplementary material, which is available to authorized users.

Background Not much is known about Do-Not-Attempt-Resuscitation (DNAR) decision-making for people with intellectual disabilities (IDs). The aim of this study was to clarify the problems and pitfalls of non-emergency DNAR decision-making for people with IDs, from the perspective of ID physicians. Methods This qualitative study was based on semi-structured individual interviews, focus group interviews and an expert meeting, all recorded digitally and transcribed verbatim. Forty ID physicians and trainees were interviewed about problems, pitfalls and dilemmas of DNAR decision-making for people with IDs in the Netherlands. Data were analysed using Grounded Theory procedures. Results The core category identified was ‘Patient-related considerations when issuing DNAR orders’. Within this category, medical considerations were the main contributory factor for the ID physicians. Evaluation of quality of life was left to the relatives and was sometimes a cause of conflicts between physicians and relatives. The category of ‘The decision-maker role’ was as important as that of ‘The decision procedure in an organisational context’. The procedure of issuing a non-emergency DNAR order and the embedding of this procedure in the health care organisation were important for the ID physicians. Conclusion The theory we developed clarifies that DNAR decision-making for people with IDs is complex and causes uncertainties. This theory offers a sound basis for training courses for physicians to deal with uncertainties regarding DNAR decision-making, as well as a method for advance care planning. Health care organisations are strongly advised to implement a procedure regarding DNAR decision-making.

Thoonsen B, Vissers K, Verhagen S, Prins J, Bor H, Van Weel C, Groot M, Engels Y. Vroegtijdige herkenning van palliatieve patienten. Huisarts Wet 2016;59(5):194-8. Huisartsen zijn de aangewezen professionals om vroege palliatieve zorg te coordineren. Maar hoe herken je tijdig patienten die hiervoor in aanmerking komen en hoe structureer je anticiperende palliatieve zorg? Om deze vragen te beantwoorden hebben we een training ontwikkeld voor huisartsen en onderzochten we het effect daarvan op contacten met de huisartsenpost (HAP) en de eigen huisarts, het aantal ziekenhuisopnamen en de plaats van overlijden. We kozen voor een clustergerandomiseerd, gecontroleerd onderzoek. We trainden huisartsen in de interventieconditie in het tijdig herkennen van palliatieve patienten en in anticiperende palliatieve zorgplanning. Daarnaast boden we de huisarts voor iedere als palliatief aangemerkte patient een coachingsessie met een consulent palliatieve zorg aan, om het zorgplan af te stemmen. De huisartsen konden een communicatietraining volgen. Huisartsen in de controlegroep vroegen we gebruikelijke zorg te verlenen. Na een jaar hebben we de karakteristieken van patienten die in dat jaar overleden waren aan kanker, COPD of hartfalen uit beide condities met elkaar vergeleken op contacten met de huisartsenpost en met hun eigen huisarts in de laatste maand voor overlijden, alsmede het aantal ziekenhuisopnamen in de laatste drie maanden voor overlijden en de plaats van overlijden. Als post-hocanalyse hebben we palliatieve patienten van de interventieconditie vergeleken met alle andere overleden patienten. Voor deze analyses hebben we mixed-models gebruikt. We vonden geen verschillen tussen de interventie- en controleconditie. Slechts 24% van de overleden patienten uit de interventiegroep was echter in het voorafgaande jaar aangewezen als palliatief. De als palliatief aangemerkte patienten hadden significant meer contacten met hun eigen huisarts (p = 0,0006), waren minder vaak in het ziekenhuis opgenomen (OR 0,485; p = 0,0437), overleden vaker thuis (OR 2,126; p = 0,0572) en minder vaak in het ziekenhuis (OR 0,380; p = 0,0449). De als palliatief aangemerkte patienten hadden vaker contact met hun huisarts, werden minder vaak in het ziekenhuis opgenomen en overleden vaker thuis. Een groot deel van de overleden patienten was echter nooit als palliatief herkend. Meer aandacht is nodig voor methoden om tijdig meer palliatieve patienten te ontdekken.

BACKGROUND: Physicians are increasingly confronted with people with intellectual disabilities (ID) who are facing life-threatening diseases. We aimed to explore when and based on which information sources and signals physicians recognised that a patient with ID would die in the foreseeable future. Insights may help in identifying patients in need of palliative care. METHOD: In this study, 81 physicians for people with ID and 16 general practitioners completed a retrospective survey about their last case of a patient with ID with a non-sudden death. RESULTS: More than 20% of all physicians foresaw death not until the last week of life. In 30% of all patients, the physician did not discuss the start of the palliative care phase until the last week. The most reported information sources based on which physicians foresaw death were the physicians themselves and professional caregivers. We found 40 different signals that lead to physicians' foreseeing death. These were not only medical signals but also behavioural and physical signals. CONCLUSIONS: Results indicate that the physicians' ability to foresee death is a result of a process of growing awareness in which multiple signals from different information sources converge. This demands continuous multi-disciplinary communication because people involved have their own unique interactions with the patient and can therefore contribute to a growing and timely awareness of patients' death in the future.

Item does not contain fulltext BACKGROUND: A growing number of people with intellectual disabilities (ID) is suffering from life-threatening chronic illnesses and is therefore in need for palliative care. AIMS: We aimed to explore how the need for palliative care is recognized in people with ID. METHODS AND PROCEDURES: We conducted a semi-structured interview study among 10 ID-physicians in the Netherlands. OUTCOMES AND RESULTS: Identification of people with ID in need for palliative care mostly results from a process in which multiple signals from different information sources converge and lead to a growing awareness. As a result, ID-physicians do not expect people to return to their prior level of health or functioning, but rather expect an irreversible decline leading to death. The presence, stage and prognosis of the disease, physician-patient interaction, and communication with proxies who provide contextual information are factors influencing the process. CONCLUSIONS AND IMPLICATIONS: Distinctive for a population of people with ID are the frequent diagnostic uncertainty in people with ID, the patients' communicational abilities and the reliance of ID-physicians on close proxies. We argue for a proactive attitude of physicians regarding care and support of people with ID with palliative care needs.

Background Empirical evidence suggests that integrated palliative care (IPC) increases the quality of care for palliative patients and supports professional caregivers. Existing IPC initiatives in Europe vary in their design and are hardly comparable. InSuP-C, a European Union research project, aimed to build a taxonomy of IPC initiatives applicable across diseases, healthcare sectors and systems. Methods The taxonomy of IPC initiatives was developed in cooperation with an international and multidisciplinary focus group of 18 experts. Subsequently, a consensus meeting of 10 experts revised a preliminary taxonomy and adopted the final classification system. Results Consisting of eight categories, with two to four items each, the taxonomy covers the process and structure of IPC initiatives. If two items in at least one category apply to an initiative, a minimum level of integration is assumed to have been reached. Categories range from the type of initiative (items: pathway, model or guideline) to patients’ key contact (items: non-pc specialist, pc specialist, general practitioner). Experts recommended the inclusion of two new categories: level of care (items: primary, secondary or tertiary) indicating at which stage palliative care is integrated and primary focus of intervention describing IPC givers’ different roles (items: treating function, advising/consulting or training) in the care process. Conclusions Empirical studies are required to investigate how the taxonomy is used in practice and whether it covers the reality of patients in need of palliative care. The InSuP-C project will test this taxonomy empirically in selected initiatives using IPC. ispartof: BMJ Supportive & Palliative Care vol:6 issue:1 pages:14-20 ispartof: location:England status: published

Background The specific palliative care needs and problems of patients with a substance use disorder and multiple problems, and those of their proxies, are under recognized Besides, the organization of palliative care, including the division of health care professionals’ responsibilities, is often unclear. Perspectives of patients and proxies are hardly known. We describe the outline of a study designed to explore how palliative care for patients with a substance use disorder is organized in the Netherlands and to explore problems and needs, as well as possible improvements from the healthcare professionals’, patients’ and proxies’ perspective. The aim of this protocol paper is to provide insights in ways to conduct research with vulnerable research participants and to offer a detailed description of the study design. The broader study aims to gain insight in and formulate recommendations on how to improve palliative care for patients with a substance use disorder. Methods A qualitative study with patients, proxies and healthcare professionals. Semi-structured interviews will be held with 10–15 patients who suffer from a severe substance use disorder. They are in a palliative care trajectory and either diagnosed with a chronic or life-threatening disease or, as a result of addictive behavior, a physical deterioration without the prospect of cure. Semi-structured interviews will also be held with 5–10 proxies. Healthcare professionals, volunteers and/or ‘experts-by-experience’ (n = 24–40) will be participating in semi-structured group interviews. All (group) interviews will be thematically analyzed. Additionally, a strengths, weaknesses, opportunities and threats (SWOT) analysis will be applied to the group interview data with the aim to summarize and concretize the findings. Discussion Everyone has a right to an optimal end-of-life phase of life and a dignified dying process. This study will provide valuable knowledge about palliative care for patients with a substance use disorder and explicitly bring to light the needs and problems of the patients and their proxies and healthcare professionals in a palliative care phase. Electronic supplementary material The online version of this article (10.1186/s12904-018-0351-z) contains supplementary material, which is available to authorized users.

Background: Although examining perspectives of patients on integrated palliative care organisation is essential, available literature is largely based on administrative data or healthcare professionals’ perspectives. Aim: (1) Providing insight into the composition and quality of care networks of patients receiving palliative care and (2) describing perceived integration between healthcare professionals within these networks and its association with overall satisfaction. Design: Cross-sectional explorative design. Setting/participants: We recruited 157 patients (62% cancer, 25% chronic obstructive pulmonary disease, 13% chronic heart failure, mean age 68 years, 55% female) from 23 integrated palliative care initiatives in Belgium, Germany, the United Kingdom, Hungary and the Netherlands. Results: About 33% reported contact with a palliative care specialist and 48% with a palliative care nurse. Relationships with palliative care specialists were rated significantly higher than other physicians ( p Conclusion: Palliative care professionals are not always present or recognised as such in patients’ care networks. Expert palliative care involvement needs to be explicated especially for non-cancer patients. One healthcare professional should support patients in understanding and navigating their palliative care network. Patients seem satisfied with care provision as long as continuity of care is provided.

Background Attention for spirituality should be an integral part of professionals' caregiving. Particularly, nurses caring for patients with cancer might have opportunities to give attention to this dimension. Objective The aim of this study was to gain insight in the way and extent to which nurses during daily caregiving observe and explore spiritual issues of hospitalized patients with cancer. Methods We performed an ethnographic study with participant observation. Data were collected in 2015 during 4 shifts at the medical oncology department of a university hospital. The researcher, a spiritual care provider (chaplain) wearing the same kind of uniform as the nurses, observed the nurses, participated in their actions, and interviewed them after the shift. Results Although the patients did send many implicit and explicit messages concerning spiritual issues, the nurses did not explore them. If noticed, 3 barriers for exploring spiritual issues were mentioned by the nurses: lack of time, conflict with their mindset, and being reserved to talk about such issues. Conclusions During their daily caregiving to patients with a life-threatening illness, nurses have many opportunities to explore spiritual issues, but they do not often recognize them. If they do, they tend not to explore the spiritual issues. Implications for practice Communication training for nurses is necessary to develop skills for exploring the spiritual dimension in patients with cancer. In such training, attention to the misconception that such a conversation requires a lot of time and for recognizing signals from patients inviting an exploration of their concerns is necessary.

Contains fulltext : 182151.pdf (Publisher’s version ) (Open Access) BACKGROUND: Parkinson's disease (PD) is a chronic, progressive neurological disorder with many intractable consequences for patients and their family caregivers. Little is known about the possibilities that palliative care could offer to patients and their proxies. Guidelines strongly recommend palliative care to improve the quality of life and - if needed - the quality of dying. However, providing palliative care to persons with PD involves specific challenges. For example, a timely initiation of palliative interventions is difficult because due to the gradually progressive nature of PD, there is often no clear marker for the transition from curative towards palliative care. Furthermore, there is little evidence to indicate which palliative care interventions are effective. Here, we describe the contours of a study that aims to examine the experiences of patients, (bereaved) family caregivers and professionals, with the aim of improving our knowledge about palliative care needs in PD. METHODS/DESIGN: We will perform a mixed methods study to evaluate the experiences of patients, (bereaved) family caregivers and palliative care professionals. In this study, we focus on Quality of Life, Quality of Care, perceived symptoms, caregiver burden and collaboration between professionals. In phase 1, we will retrospectively explore the views of bereaved family caregivers and professionals by conducting individual interviews and focus group interviews. In phase 2, 5-15 patients with PD and their family caregiver will be followed prospectively for 8-12 months. Data collection will involve semi-structured interviews and questionnaires at three consecutive contact moments. Qualitative data will be audio recorded, transcribed and analyzed using CAQDAS. If patients pass away during the study period, a bereavement interview will be done with the closest family caregiver. DISCUSSION: This study will offer a broad perspective on palliative care, and the results can be used to inform a palliative care protocol for patients with PD. By describing the experiences of patients, (bereaved) family caregivers and professionals with palliative care, this investigation will also establish an important ground for future intervention research.

Background: Parkinson's Disease Nurse Specialists (PDNS) play an important role in the care for patients with Parkinson's disease (PD) and their caregivers. Until now, there were no nursing guidelines in PD, and interventions were based solely on daily clinical practice because there is no evidence to support the merits of nursing interventions. Consequently, there is little uniformity in current care delivery.Objective: Developing a guideline for PDNS.Methods: We developed a guideline based on a questionnaire among PDNS and a literature review, supplemented with expert opinion plus the input of patients and caregivers. The questionnaire was filled in by 97 PDNS and 51 generic nurses with knowledge of PD to identify barriers in PD nursing care. Subsequently, we did a systematic literature search and transformed these sources of information into practice recommendations, which were developed according to international standards for guideline development.Results: Based on the results of the questionnaire we identified seven specific core areas: defining the role of PDNS in terms of caseload, education, competences and care coordination; medication adherence; provision of information and education; coping; caregiver support; urogenital function and orthostatic hypotension. The systematic literature search identified 186 studies, of which 33 studies were finally analyzed. Furthermore, we developed practice recommendations based on good clinical practice for the following areas: self-care, mental functioning, mobility, nutrition, sexuality, work, sleep, palliative care and complementary (integrative) care.Conclusion: This guideline provide ground to harmonize care delivery by PDNS in clinical practice, and offer a foundation for future research.

Item does not contain fulltext Quantitative studies have assessed nurses' attitudes toward and frequency of spiritual care [SC] and which factors are of influence on this attitude and frequency. However, we had doubts about the construct validity of the scales used in these studies. Our objective was to evaluate scales measuring nursing SC. Articles about the development and psychometric evaluation of SC scales have been identified, using, Web of Science, and CINAHL, and evaluated with respect to the psychometric properties and item content of the scales. Item content was evaluated by each of the five authors with respect to the following questions: Does the item (1) reflect a general opinion about SC instead of a personal willingness to offer SC; (2) reflect general psychosocial care instead of specific SC; (3) focus solely on religious care; (4) contain the words 'spiritual' (care/needs/health/strengths, etc.); and (5) contain multiple propositions, or have an unclear meaning? We found eight scales. Psychometric analysis of these scales was often meager and the items of all but one scale suffered from two or more of the five problems described above. This leads us to conclude that many quantitative results in this area are based on findings with questionable scales. Suggestions for improvements are provided.

Background: Patients with advanced diseases often experience deficient continuity of care. Although integrated palliative care promotes continuity of care, it is not clear how it can be optimized to improve continuity of care experiences. Aim: To examine how relational, informational and management continuity of care are experienced by patients with advanced diseases and their family caregivers receiving care from several integrated palliative care initiatives in five European countries. Design: We adopted a longitudinal qualitative study design including two interviews (interval 3 months) with patients and family caregivers focusing on how health care professionals responded to their needs. Interviews were audio-recorded and transcribed verbatim. Analysis involved a two-step qualitative content approach. Setting/participants: A total of 22 integrated palliative care initiatives (established local palliative care collaborations) were selected in Belgium, Germany, Hungary, the Netherlands and the United Kingdom. We recruited 152 patients (63% cancer, 24% chronic obstructive pulmonary disease, 13% heart failure; life expectancy Results: Trusted relationships with a small number of key health care professionals to receive tailored care and easily access help were essential. Relational continuity was often deficient, especially with general practitioners. Although informational and management continuity was often lacking in care provision, collaborative integrated palliative care initiatives were related to consistent and coherent care. Conclusion: Patients and family caregivers most likely experience continuity of care by having a small number of trusted health care professionals who are available, provide multidisciplinary care and regularly transfer information to all health care professionals involved. Optimizing continuity of care requires further integration of integrated palliative care initiatives with other health care professionals involved in the patients’ care networks.

Background Early identification of pain and other problems is an important aspect of palliative care. Although nurses have an important role in palliative care, little is known about nurses’ perceptions of proactive palliative care. Objectives This study aimed to explore nurses’ perceptions and experiences of proactive identification of problems and requirements among patients with palliative care needs. Methods This was a qualitative study in which 16 nurses working in palliative care took part in two focus groups. Results All of the nurses underlined the importance of their early involvement in palliative care. Anticipation of possible future problems, advice and information about end-of-life care and palliative care facilities, and assessment of patients’ wishes regarding care and preferred place of death were mentioned as important aspects of the early identification of problems and needs. Four themes were identified: the start of proactive palliative care; communication, support, and guidance; advocating for patients; and cooperation with health professionals. Conclusions Nurses’ involvement in proactive palliative care is important in supporting patients’ palliative care management. Ongoing education, focused on multidisciplinary communication and cooperation, professional development, and empowerment of nurses, remains of utmost importance.

Item does not contain fulltext Palliative medicine is a young specialty that is officially recognized in relatively few countries. The World Health Organization published an adapted definition in 2002, describing palliative care as an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness. When the accent is shifting from curative to palliative, the goal of management is the maintenance or improvement of the patient's quality of life. The different dimensions of palliative care and the multitude of types of care to be provided require a multidisciplinary, well-functioning team, effective communication and a clear task division between primary and hospital care. Considering the complexity of care for incurable patients, a multidisciplinary approach is a prerequisite to balance curative and palliative intervention options. Optimal functioning of a team requires excellent training, communication and a description of the tasks and responsibilities of each team member. More and more advanced care planning is introduced in palliative care, focusing on an early identification of patients in a palliative trajectory and on the prevention of annoying symptoms, hoping that this approach results in an improved quality of life for the individual patient, less useless technical investigations and a better end-of-life care on the place the patient and his family desires.

Item does not contain fulltext BACKGROUND: Insights into symptoms and interventions at the end of life are needed for providing adequate palliative care, but are largely lacking for people with intellectual disabilities (IDs). OBJECTIVES: We aimed at determining the prevalence rates of physician-reported symptoms from the Edmonton Symptom Assessment System (ESAS) at the moment that physicians recognized patient's death in the foreseeable future. In addition, we aimed at exploring provided interventions as reported by physicians in the period between physicians' recognition of death in the foreseeable future and patients' death. MEASUREMENTS: In this study, 81 physicians for people with IDs (ID-physicians) completed a retrospective survey about their last patient with IDs with a nonsudden death. RESULTS: On average, patients suffered from three of the eight ESAS symptoms. Fatigue (83%), drowsiness (65%), and decreasing intake (57%) were most reported. ID-physicians reported a median number of four interventions. Interventions were mostly aimed at somatic problems, such as pain and shortness of breath. Burdensome interventions such as surgery or artificial respiration were least or not reported. Palliative sedation was provided in a third of all cases. CONCLUSION: Although ID-physicians reported a variety of their patients' symptoms and of provided interventions at the end of life, using adequate symptom assessment tools suitable for people with IDs and continuous multidisciplinary collaboration in palliative care are essential to capture symptoms as fully as possible.

Background: Integrated Palliative Care (PC) strategies are often implemented following models, namely standardized designs that provide frameworks for the organization of care for people with a progressive life-threatening illness and/or for their (in)formal caregivers. The aim of this qualitative systematic review is to identify empirically-evaluated models of PC in cancer and chronic disease in Europe. Further, develop a generic framework that will consist of the basis for the design of future models for integrated PC in Europe.Methods: Cochrane, PubMed, EMBASE, CINAHL, AMED, BNI, Web of Science, NHS Evidence. Five journals and references from included studies were hand-searched. Two reviewers screened the search results. Studies with adult patients with advanced cancer/chronic disease from 1995 to 2013 in Europe, in English, French, German, Dutch, Hungarian or Spanish were included. A narrative synthesis was used.Results: 14 studies were included, 7 models for chronic disease, 4 for integrated care in oncology, 2 for both cancer and chronic disease and 2 for end-of-life pathways. The results show a strong agreement on the benefits of the involvement of a PC multidisciplinary team: better symptom control, less caregiver burden, improvement in continuity and coordination of care, fewer admissions, cost effectiveness and patients dying in their preferred place.Conclusion: Based on our findings, a generic framework for integrated PC in cancer and chronic disease is proposed. This framework fosters integration of PC in the disease trajectory concurrently with treatment and identifies the importance of employing a PC-trained multidisciplinary team with a threefold focus: treatment, consulting and training.

Background According to the World Health Organization (WHO) definition, palliative care should be initiated in an early phase and not be restricted to terminal care. In the literature, no validated tools predicting the optimal timing for initiating palliative care have been determined. Aim The aim of this study was to systematically develop a tool for GPs with which they can identify patients with congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), and cancer respectively, who could benefit from proactive palliative care. Design A three-step procedure, including a literature review, focus group interviews with input from the multidisciplinary field of palliative healthcare professionals, and a modified Rand Delphi process with GPs. Method The three-step procedure was used to develop sets of indicators for the early identification of CHF, COPD, and cancer patients who could benefit from palliative care. Results Three comprehensive sets of indicators were developed to support GPs in identifying patients with CHF, COPD, and cancer in need of palliative care. For CHF, seven indicators were found: for example, frequent hospital admissions. For COPD, six indicators were found: such as, Karnofsky score ≤50%. For cancer, eight indicators were found: for example, worse prognosis of the primary tumour. Conclusion The RADboud indicators for PAlliative Care Needs (RADPAC) is the first tool developed from a combination of scientific evidence and practice experience that can help GPs in the identification of patients with CHF, COPD, or cancer, in need of palliative care. Applying the RADPAC facilitates the start of proactive palliative care and aims to improve the quality of palliative care in general practice.

Contains fulltext : 52154.pdf (Publisher’s version ) (Closed access) INTRODUCTION: In order to facilitate GPs in their work and increase the possibilities for patients to remain at home, it is important to identify the obstacles which hinder the delivery of primary palliative care. From previous research we learned about some of the problems experienced by GPs. In this survey we aimed to identify the prevalence of such problems in providing palliative care and its determinants. METHODS: The prevalence of obstacles and its determinants were identified by a questionnaire to 320 GPs in three regions of the Netherlands. Obstacles were grouped as follows: communication, organisation & co-ordination of care, knowledge & expertise, integrated care, time for relatives. The potential determinants were GP characteristics and expertise development activities. RESULTS: The response rate was 62.3%. GPs experienced considerable obstacles in all aspects of palliative care. The most prevalent were: problems with bureaucratic procedures (83.9%), the time necessary to arrange home care technology (61.1%) and the difficulties accompanied with the wish or necessity to obtain extra care (56.3%). In general, more years of GP experience and the participation in (multidisciplinary) case discussions were associated with less perceived obstacles. DISCUSSION: Based on the results of our survey policymakers and practitioners can plan and set priorities in handling the obstacles. There is a high necessity of firstly overcoming the barriers within organisation and coordination of care. Furthermore, our study can help in choosing the (additional) expertise needed in the future and in the realisation of the preferred expertise advancement activities. Palliative Medicine 2007; 21: 697-703.