Implementing Advance Care Planning and Care Coordination in the Care for People With Parkinson Disease: A Feasibility Study.

ABSTRACT: BACKGROUND: For people with a moderate stage of Parkinson disease (PD), dedicated care coordination combined with advance care planning (ACP) is highly needed. However, evidence is lacking. The objective of this study was to assess the feasibility and acceptability of the study processes to inform a larger randomized controlled trial, aiming the effectiveness of a combined intervention on ACP and care coordination for people with PD. METHODS: Two nurse practitioners with expertise in PD followed training on a combined intervention on ACP and care coordination. Patients were invited to participate in several sessions for a period of 12 months. Feasibility of the study was surveyed covering sample recruitment, attrition rate, eligibility, intervention delivery, number of ACP sessions, type of intervention administration, and satisfaction with the intervention. RESULTS: In total, 27 patients were invited to participate, and 20 (74%) enrolled into the study, together with 11 family caregivers; 7 patients (35%) dropped out. Most patients were men (n = 20), with a mean age of 73.4 (SD 8.2) years. In total, 71 ACP sessions were held (3.6 sessions per patient on average), of which 41% of the sessions were conducted face-to-face at home, 44% at the hospital, 11% over telephone, and 4% via a videoconference call. Patients perceived the intervention not only as supportive but also as confronting. CONCLUSION: The ACP aspect of the intervention was useful and feasible to stimulate patients to think about their current care situation as well as about future care. Care coordination was less profoundly provided and discussed.

A first study on the usability and feasibility of four subtypes of suicidality in emergency mental health care.

BACKGROUND: Based on clinical experience, a (hypothetical) four-type model of suicidality that differentiates between subtypes with a unique pathway to entrapment ((h)4ME)was developed. The subtypes are: 1) perceptual disintegration (PD), 2) primary depressive cognition (PDC), 3) psychosocial turmoil (PT) and 4) inadequate communication/coping (IC). This study was carried out to examine the usability and feasibility of the subtypes in an absolute and dimensional way with the SUICIDI-2 instrument. OBJECTIVE: A first step was to examine the model and the SUICIDI-2 instrument for usability and feasibility in clinical practice. We aim to investigate the'real life' practical application of the model and hope the feedback we get after practical use of the model will help us with improvements for the model and the SUICIDI-2 instrument. METHODS: Discharge letters to general practitioners of 25 cases of anonymized suicidal emergency patients were independently reviewed by three psychiatrists and three nurses. Using the SUICIDI-2 instrument, describing the proposed subtypes, cases were classified by the psychiatrists and nurses. Intraclass Correlation Coefficients (ICC) for absolute/discrete and dimensional ratings were calculated to examine the model's usability and the instrument's feasibility. The study was approved by the ethical board. RESULTS: All raters were able to recognize and classify the cases in subtypes. We found an average measure of good reliability for absolute/(discrete) subtypes. For dimensional scores, we found excellent average measures for the subtype PDC, and good average measures for the subtypes PD, PT and IC. The reliability of dimensional score for the SUICIDI-2 was relatively lower than an alternative dimensional rating, but had good ICC values for all subtypes. After reviewing the results though, we found some inconsistently assessment between raters. This was ground to narrow down the criteria per subtype to describe the subtypes more precisely. This resulted in adjusted formulations for subtypes PD and IC and agreement was achieved about formulations in the revised SUICIDI-3. CONCLUSIONS: The hypothetical model of entrapment leading to suicidality shows promising results for both the usability and feasibility of the SUICIDI instrument. Follow up studies with participants with a more diverse background may show consistency and validity for the model.

A Clinical Model for the Differentiation of Suicidality: Protocol for a Usability Study of the Proposed Model.

BACKGROUND: Even though various types of suicidality are observed in clinical practice, suicidality is still considered a uniform concept. To distinguish different types of suicidality and consequently improve detection and management of suicidality, we developed a clinical differentiation model for suicidality. We believe that the model allows for a more targeted assessment of suicidal conditions and improves the use of evidence-based treatment strategies. The differentiation model is based on the experience with suicidality that we have encountered in clinical practice. This model distinguishes 4 subtypes of entrapment leading to suicidality. The earliest description of this model and a proposal for usability research has been previously presented in a book chapter. OBJECTIVE: In this study, we present the most recent version of the 4-type differentiation model of suicidality and a protocol for a study into the usability of the proposed model. METHODS: The 4-type differentiation model of suicidality distinguishes the following subtypes: (1) perceptual disintegration, (2) primary depressive cognition, (3) psychosocial turmoil, and (4) inadequate coping or communication. We plan to test the usability of the 4 subtypes in a pilot study of 25 cases, and subsequently, we will include 75 cases in a follow-up study. We looked at the case notes of 100 anonymized patients with suicidality who presented to mental health care emergency service in The Hague International Center. The summary and conclusions of the letters sent to the patients' general practitioners after suicide risk assessment will be independently rated by 3 psychiatrists and 3 nurse-scientists for absolute and dimensional scores. The Suicidality Differentiation version 2 (SUICIDI-II) instrument, developed for this study, is used for rating all the cases. Intraclass correlation coefficients for absolute and dimensional scores will be calculated to examine type agreement between raters to examine the usability of the model and the feasibility of the SUICIDI-II instrument. RESULTS: We consider the model tentatively valid if the intraclass correlation coefficients are ≥0.70. Subsequently, if the model turns out to be valid, we plan to rate 75 other cases in a follow-up study, according to a similar or adjusted procedure. Study results are expected to be published by the end of 2023. CONCLUSIONS: The theoretical roots of the differentiation model stem from classic and contemporary theoretical models of suicidality and from our clinical practice experiences with suicidal behaviors. We believe that this model can be used to adjust the diagnosis, management, treatment, and research of suicidality, in addition to distinguishing different dynamics between practitioners and patients with suicidality and their families. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/45438.

How patients with severe mental illness experience care provided by psychiatric mental health nurse practitioners.

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.

Severe mental illness and palliative care: patient semistructured interviews.

OBJECTIVES: To explore perceptions, experiences and expectations with respect to palliative care of patients with severe mental illness (SMI) and an incurable, life-limiting chronic illness. METHODS: Face-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. RESULTS: Analysis 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. CONCLUSIONS: Findings 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.

Implementation of a threefold intervention to improve palliative care for persons experiencing homelessness: a process evaluation using the RE-AIM framework.

BACKGROUND: Palliative care provision for persons experiencing homelessness is often poor. A threefold consultation service intervention was expected to increase knowledge of palliative care and multidisciplinary collaboration, and improve palliative care for this population. This intervention comprised: 1) consultation of social service professionals by palliative care specialists and vice versa; 2) multidisciplinary meetings with these professionals; and 3) training and education of these professionals. We aimed to evaluate the implementation process and its barriers and facilitators of this service implemented within social services and healthcare organizations in three Dutch regions. METHODS: A process evaluation using structured questionnaires among consultants, semi-structured individual and group interviews among professionals involved, and (research) diaries. Qualitative data were analysed using thematic analysis. The process evaluation was structured using the Reach, Adoption, Implementation and Maintenance dimensions of the RE-AIM framework. RESULTS: All three regions adopted all three activities of the intervention, with differences between the three regions in the start, timing and frequency. During the 21-month implementation period there were 34 consultations, 22 multidisciplinary meetings and 9 training sessions. The professionals reached were mainly social service professionals. Facilitators for adoption of the service were a perceived need for improving palliative care provision and previous acquaintance with other professionals involved, while professionals' limited skills in recognizing, discussing and prioritizing palliative care hindered adoption. Implementation was facilitated by a consultant's expertise in advising professionals and working with persons experiencing homelessness, and hindered by COVID-19 circumstances, staff shortages and lack of knowledge of palliative care in social service facilities. Embedding the service in regular, properly funded meetings was expected to facilitate maintenance, while the limited number of persons involved in this small-scale service was expected to be an obstacle. CONCLUSIONS: A threefold intervention aimed at improving palliative care for persons experiencing homelessness is evaluated as being most usable when tailored to specific regions, with bedside and telephone consultations and a combination of palliative care consultants and teams of social service professionals. It is recommended to further implement this region-tailored intervention with palliative care consultants in the lead, and to raise awareness and to remove fear of palliative care provision.

The Effect of a Multidisciplinary Blended Learning Program on Palliative Care Knowledge for Health Care Professionals Involved in the Care for People with Parkinson's Disease.

BACKGROUND: Parkinson's disease (PD) is an increasingly prevalent and progressive degenerative disease. Palliative care for PD should be integrated into the routine care for people with PD. However, PD health care professionals typically lack knowledge of palliative care, highlighting the necessity of educational programs in this field. OBJECTIVE: To determine the effectiveness of a multidisciplinary blended learning program for health care professionals specialized in PD in the Netherlands. METHODS: We used a pre-posttest intervention design. The intervention consisted of an e-learning in combination with an online network meeting in which the participating health care professionals discussed palliative care for PD with specialists from the field of palliative care. Outcome variables included self-rated level of knowledge (scale 1-10), familiarity with specialized palliative care services (5-point Likert scale) and the validated End-of-Life Professional Caregiver Survey (EPCS). RESULTS: A total of 1029 participants from sixteen different disciplines, all active in the care for people with PD, with a mean age of 45 years and 13 years of working experience, followed the blended learning program. Self-rated level of knowledge improved from 4.75 to 5.72 (0.96; p < 0.001; 95% CI change = [0.85 . . . 1.08]. Familiarity with palliative care services also increased by 1.06 (from 1.85 to 2.90; p=<0.001; 95% CI change = [1.00 . . . 1.12]). CONCLUSION: A blended learning program can improve self-rated knowledge about palliative care and its services. Such programs might be a first step towards optimal integration of palliative care expertise and services within PD-care.

"No One Can Tell Me How Parkinson's Disease Will Unfold": A Mixed Methods Case Study on Palliative Care for People with Parkinson's Disease and Their Family Caregivers.

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.

Advance Care Planning and Care Coordination for People With Parkinson's Disease and Their Family Caregivers-Study Protocol for a Multicentre, Randomized Controlled Trial.

Background: Parkinson's disease (PD) is a progressive neurodegenerative disease with motor- and non-motor symptoms. When the disease progresses, symptom burden increases. Consequently, additional care demands develop, the complexity of treatment increases, and the patient's quality of life is progressively threatened. To address these challenges, there is growing awareness of the potential benefits of palliative care for people with PD. This includes communication about end-of-life issues, such as Advance Care Planning (ACP), which helps to elicit patient's needs and preferences on issues related to future treatment and care. In this study, we will assess the impact and feasibility of a nurse-led palliative care intervention for people with PD across diverse European care settings. Methods: The intervention will be evaluated in a multicentre, open-label randomized controlled trial, with a parallel group design in seven European countries (Austria, Estonia, Germany, Greece, Italy, Sweden and United Kingdom). The "PD_Pal intervention" comprises (1) several consultations with a trained nurse who will perform ACP conversations and support care coordination and (2) use of a patient-directed "Parkinson Support Plan-workbook". The primary endpoint is defined as the percentage of participants with documented ACP-decisions assessed at 6 months after baseline (t1). Secondary endpoints include patients' and family caregivers' quality of life, perceived care coordination, patients' symptom burden, and cost-effectiveness. In parallel, we will perform a process evaluation, to understand the feasibility of the intervention. Assessments are scheduled at baseline (t0), 6 months (t1), and 12 months (t2). Statistical analysis will be performed by means of Mantel-Haenszel methods and multilevel logistic regression models, correcting for multiple testing. Discussion: This study will contribute to the current knowledge gap on the application of palliative care interventions for people with Parkinson's disease aimed at ameliorating quality of life and managing end-of-life perspectives. Studying the impact and feasibility of the intervention in seven European countries, each with their own cultural and organisational characteristics, will allow us to create a broad perspective on palliative care interventions for people with Parkinson's disease across settings. Clinical Trial Registration:www.trialregister.nl, NL8180.

Haptotherapy for patients with cancer; experience of haptotherapists and reasons for consultation: A survey among haptotherapists.

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.

Impact of nurse practitioner care on patients with chronic conditions.

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.

"How Long Can I Carry On?" The Need for Palliative Care in Parkinson's Disease: A Qualitative Study from the Perspective of Bereaved Family Caregivers.

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.

RADPAC-PD: A tool to support healthcare professionals in timely identifying palliative care needs of people with Parkinson's disease.

BACKGROUND: Parkinson'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. AIM: Our aim was to develop a tool that can help healthcare professionals in timely identifying palliative care needs in people with PD. DESIGN: We 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. RESULTS: Data 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. CONCLUSION: The 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.

Ethical and research governance approval across Europe: Experiences from three European palliative care studies.

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.

Outreach Psychiatric Emergency Service.

Background: Outreach psychiatric emergency services play an important role in all stages of a suicidal crisis; however, empirical assessment data are scarce. This study describes characteristics of patients assessed by these services and involved in suicidal crises. Method: During a 5-year period, detailed information from psychiatric emergency service assessments was recorded; 14,705 assessments were included. Characteristics of patients with/without suicidal behavior and with/without suicide attempts were compared. Outcomes were adjusted for clustering of features within individual patients. Results: Suicidal behavior was assessed in 32.2% of patients, of whom 9.2% attempted suicide. Suicidal behavior was most commonly associated with depression or adjustment disorder and these patients were referred to the service by a general practitioner or a general hospital, whereas those who attempted suicide were less likely to be referred by a general practitioner. Those who attempted suicide were more likely to be female and have had a referral by a general hospital. Self-poisoning by medication was the most common method of attempting suicide. Limitations: Bias could be due to missed or incomplete assessments. Primary diagnoses were based on clinical observation at the time of the assessment or on the primary diagnosis previously recorded. In addition, suicidal behavior or attempted suicide might have been underestimated. Conclusions: Suicidal behavior is commonplace in assessments by psychiatric emergency services. Suicidal patients with/without a suicide attempt differed with respect to demographic features, primary diagnoses, and referring entities, but not with respect to treatment policy. About 40% of the suicidal patients with/without an attempt were admitted following assessment.

Palliative care for patients with substance use disorder and multiple problems: a qualitative study on experiences of healthcare professionals, volunteers and experts-by-experience.

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.

Spiritual care by nurses in curative oncology: a mixed-method study on patients' perspectives and experiences.

AIMS: Spirituality 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. METHODS: This 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. FINDINGS: Most 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. CONCLUSIONS: Attention 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.

Palliative care for people with substance use disorder and multiple problems: a qualitative study on experiences of patients and proxies.

BACKGROUND: Systematic research into palliative care (PC) for people with substance use disorder (SUD) and multiple problems is scarce. The existing literature shows problems in the organizational structure of this care, e.g., lack of clear care pathways. Furthermore, negative attitudes of healthcare professionals (HCPs) and stigmatization surrounding SUD, and patients' care-avoidance and non-disclosure of substance use are hindering factors in providing timely and person-centered PC. Furthermore, the experiences and needs of patients and proxies themselves are unknown. Therefore, this study aims to explore which problems and needs patients with SUD and multiple problems, and their proxies, experience in a PC phase. METHODS: Data-collection of this qualitative study consisted of semi-structured interviews with patients with SUD and multiple problems in a PC phase, and their proxies, about their experiences in PC and their well-being. Interviews were inductively analyzed. RESULTS: Nine patients and three proxies were included. Six patients suffered from COPD, one patient from cirrhosis of the liver and two patients from both. Seven patients stayed in a nursing home and two had a room in either a social care service (hostel) or an assisted living home where medical care was provided. Five themes were identified: 1) healthcare delivery (including HCPs behaviour and values); 2) end-of-life (EOL) preferences (mostly concerning only the individual patient and the 'here-and-the-now'); 3) multidimensional problems; 4) coping (active and passive) and; 5) closed communication. Proxies' experiences with healthcare differed. Emotionally, they were all burdened by their histories with the patients. CONCLUSIONS: This study shows that talking about and anticipating on PC with this patient-group appears hard due to patients' closed and avoiding communication. Furthermore, some of patients' EOL-preferences and needs, and coping-strategies, seem to differ from the more generally-accepted ideas and practices. Therefore, educating HCPs in communicating with this patient-group, is needed.

Palliative care for persons with Parkinson's disease: a qualitative study on the experiences of health care professionals.

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.

Dementia and Parkinson's Disease: Similar and Divergent Challenges in Providing Palliative Care.

Dementia and Parkinson's disease are incurable neurological conditions. Patients often experience specific, complex, and varying needs along their disease trajectory. Current management typically employs a multidisciplinary team approach. Recognition is growing that this team approach should also address palliative care issues to optimize quality of life for patient and family caregivers, but it remains unclear how palliative care is best delivered. To inspire future service development and research, we compare the trajectories and conceptualization of palliative care between dementia and Parkinson's disease. Both Parkinson's disease and dementia are characterized by a protracted course, with progressive but fairly insidious development of disability. However, patients with Parkinson's disease may experience relatively stable periods initially but with time, a wide range of debilitating symptoms develops, many of which do not respond well to treatment. Eventually, dementia develops in most Parkinson patients, while motor disability develops in many dementia patients. In both diseases, symptoms such as pain, apathy, sleeping problems, falls, and a high caregiver burden are prevalent. Advance care planning has benefits in terms of being prepared before the disease progresses into a stage with communication problems or severe cognitive impairment. However, for both conditions, the protracted disease trajectories complicate conceptualization of palliative care through different stages of the disease, with pertinent questions such as when to offer what interventions pro-actively. Given the similarities and differences, we should develop palliative approaches that are partially generic and partially disease-specific. These should be integrated seamlessly with disease-specific care. Substantial research is already being performed on dementia palliative care. This may also inform the further development of palliative care for Parkinson's disease, including an evaluation of palliative interventions and services.