Development of a complex intervention (safe and secure) to support non-western migrant patients with palliative care needs and their families.

PURPOSE: International evidence supports the benefits of early use of palliative care, although the best use of services is often under-utilised among Danish migrants. The study aims to develop a theoretically informed, evidence-based intervention to increase support in palliative care service provision among non-western migrant patients with a life-threatening disease and their families in Denmark. METHODS: The overall approach was guided by the United Kingdom Medical Research Council framework for developing and evaluating complex interventions by involving stakeholders for example patients, family caregivers, and healthcare professionals. The intervention was developed iteratively by incorporating theory and evidence. Evidence was synthesized from a systematic review, semi-structured interviews, and group discussions with patients (n = 8), family caregivers (n = 11), healthcare professionals (n = 10); and three workshops with migrants (n = 5), social and healthcare professionals (n = 6). The study took place in six different settings in two regions across Denmark. RESULTS: The safe and secure complex intervention is a healthcare professional (e.g. nurse, physiotherapist, or occupational therapist) led patient-centred palliative care intervention at the basic level. The final intervention consists of three components 1. Education and training sessions, 2. Consultations with the healthcare professional, and 3. Coordination of care. CONCLUSION: This study describes the development of a supportive palliative care intervention for non-western migrant patients with palliative care needs and their families, followed by a transparent and systematic reporting process. A palliative care intervention combining multiple components targeting different stakeholders, is expected that safe and secure is more suitable and well customized in increasing access and use of palliative care services for non-western migrant families in Denmark.

Palliative Care Utilisation Among Non-Western Migrants in Denmark: A Qualitative Study Of the Experiences of Patients, Family Caregivers and Healthcare Professionals.

This study explores care experiences while utilising palliative care services of non-western migrant families from the perspectives of patients, family caregivers, and healthcare professionals in Denmark. Twenty-three semi-structured individual and group interviews were conducted among eight patients with a life-threatening disease, 11 family caregivers, and ten healthcare professionals. Thematic analysis revealed three themes: 1) Communication between families and healthcare professionals; 2) Building and lack of trusting relations, and feeling safe, and 3) Access to information and navigating in the healthcare system. Moreover, ''language and culture'' emerged as transaction themes that are not mutually exclusive, however, interconnect across the mentioned three themes. Non-western migrant families can be supported by healthcare professionals' cultural competency training, negotiating on providing services concerning information, patient preferences, family involvement, and palliative care setting. This study findings urge inter-sectoral collaboration to ensure needs-oriented and linguistically and culturally appropriate palliative care services for non-western migrant families in Denmark.

Palliative Care Utilization Among Non-Western Migrants in Europe: A Systematic Review.

The paper aims to identify and describe the European evidence on opportunities and barriers to access and utilization of palliative care among non- western migrants. A systematic review in accordance with PRISMA guidelines was conducted in June 2020, searching Medline, CINAHL, PsychINFO and EMBASE databases. PROSPERO# CRD42020193651. Studies included empirical research published between 2011 and 2020. Search words were, for example, ethnic groups and palliative care. Thematic analysis was used to analyze data. Twenty nine qualitative and six quantitative studies were included. Four main themes were identified: communication and language; knowledge and awareness; patient preferences, cultural and religious issues; and lack of resources at different levels of palliative care service provision. Migrants' access to palliative care is impeded at system, community and individual levels, yet, recommendations are mostly at the individual level. Closer attention is required to these different levels when designing future palliative interventions for migrants.

What are the prevalence and predictors of psychosocial healthcare among patients with heart disease? A nationwide population-based cohort study.

OBJECTIVES: Psychosocial healthcare is recommended, but little is known about how patients perceive the level of care and whether subgroups of patients experience less psychosocial healthcare than others. We examined the prevalence of patient-reported psychosocial healthcare and factors predicting patient-reported lack of psychosocial healthcare among patients with heart disease. DESIGN: A cohort study. SETTING: Denmark, nationwide. PARTICIPANTS: A registry-based random sample of 5000 patients with incident heart disease in 2013. MEASURES: Patient-reported psychosocial healthcare was obtained from a survey and potential predictors before disease onset from registries. We used multivariable logistic regression analysis to determine predictors of patient-reported lack of care. RESULTS: We received responses from 56%; 40% reported lacking information on psychosocial aspects, 51% lacking psychosocial rehabilitation and support and 32% reported lacking both types of psychosocial healthcare. The type of heart disease was the strongest predictor of patient-reported lack of psychosocial healthcare, especially among patients with atrial fibrillation (OR: 3.11-3.98). Older age (OR: 1.48-2.05), female gender (OR: 1.27-1.53) and no contact with general practitioner (OR: 1.47-1.84) also predicted patient-reported lack of psychosocial healthcare. Patients outside the labour force (OR: 1.29) and living in the capital region (OR: 1.50) more frequently reported lacking psychosocial rehabilitation and support, and patients with recent (OR: 1.63) or past (OR: 1.33) anxiety or depression and severe comorbidities (OR: 1.34) more frequently reported lacking both types of psychosocial healthcare. CONCLUSIONS: Many patients with heart disease reported lacking psychosocial healthcare. Importantly, patients who most need psychosocial healthcare are not those who report receiving it. Our results call for action to translate guidelines into clinical practice.

Qualitative study to explore what patients with heart failure find significant during integrated palliative care sessions in a Danish clinic.

OBJECTIVE: In the field of palliative care (PC) as it is integrated into heart failure (HF) treatment, it is essential to explore the patient experience and build on this knowledge for the further development of PC practice and policy. Based on an intervention study, this paper explores what patients with HF find significant in integrated sessions using a narrative S' approach. DESIGN: We conducted a semistructured interview study with a qualitative analysis focused on meaning making. The study follows the guidelines of Consolidated Criteria for Reporting Qualitative Research. PARTICIPANTS AND SETTING: The inclusion criteria for the PC intervention were (1) a new diagnosis of HF, (2) follow-up treatment at this local Danish HF clinic and (3) informed consent to participate in the integrated PC intervention. The only exclusion criterion was if the patient was already engaged in a PC programme. 20 patients agreed to participate in the intervention, and 12 of these completed the S' approach sessions and participated in this interview study. RESULTS: Overall, the analysis showed that the integrated S' approach sessions were successful in joining an embodied patient perspective with a medical perspective. The thematic analysis resulted in three themes supporting the overall findings: sessions bring comfort, telling your story provides a sense of meaningfulness, and integrating perspectives of HF into everyday life. CONCLUSION: The method using the S' approach in integrated PC and HF sessions was significant in various ways. First, patients experienced a calm and safe atmosphere and perceived that the nurse was truly interested in them. Second, the integrated sessions based on the S' approach were able to bring comfort to lived physical, psychosocial and existential issues. Last, it allowed patients to combine their embodied understanding of HF with a medical perspective, thereby finding meaning in the sense of how everything is connected.

The use of personal narratives in hospital-based palliative care interventions: An integrative literature review.

BACKGROUND: People living with life-threatening illness experience unmet existential needs despite the growing research and clinical field of palliative care. Narrative interventions show promise in managing these problems, but more knowledge is needed on the characteristics of narrative interventions and the feasibility of using personal narratives in a hospital. AIM: To review the literature on personal narratives in hospital-based palliative care interventions and to strengthen palliative care practices. DESIGN: We conducted a systematic integrative review with qualitative analysis and narrative synthesis in accordance with PRISMA where applicable (PROSPERO#:CRD42018089202). DATA SOURCES: We conducted a systematic search in PubMed, Embase, Scopus, Cinahl, SocINDEX and PsychInfo for primary research articles published until June 2018. We assessed full-text articles against the eligibility criteria followed by a discussion of quality using the Critical Appraisal Skills Programme. RESULTS: Of 480 articles, we found 24 eligible for this review: 8 qualitative, 14 quantitative and 2 mixed methods. The articles reported on dignity therapy, legacy building, outlook, short-term life review and life review. Data analysis resulted in five themes: core principles, theoretical framework, content of narrative, outcome and, finally, acceptability and feasibility. CONCLUSION: Various types of systematic palliative care interventions use personal narratives. Common to these is a shared psychotherapeutic theoretical understanding and aim. Clinical application in a hospital setting is both feasible and acceptable but requires flexibility regarding the practices of the setting and the needs of the patient.

Talking about end of life in general palliative care - what's going on? A qualitative study on end-of-life conversations in an acute care hospital in Denmark.

BACKGROUND: End-of-life (EOL) conversations in hospital should serve to give patients the opportunity to consider future treatment options and help them clarify their values and wishes before it becomes relevant to make decisions about treatment. However, it is known that EOL conversations are not performed systematically in hospital. This may mean that patients and their relatives do not address EOL issues. There is a lack of knowledge about who is responsible for conducting these conversations, and when and under what circumstances they are conducted. The aim of this study was to explore the existing practices regarding EOL conversations in an acute care hospital setting. METHODS: The design was Interpretive Description and the methods for the data collection included: 1. Participatory observational studies in a pulmonary medical and surgical ward (a total of 66 h); 2. Four focus group interviews with healthcare professionals (n = 14) from the wards. The analysis followed Spradley's ethnosemantic analysis. RESULTS: The results revealed three cultural categories related to: 1. The physical and organizational setting; 2. The timing of EOL conversations and competencies and roles in addressing EOL issues and 3. Topics addressed in EOL conversations. The EOL conversations were part of daily clinical practice, but there was a lack of competencies, roles were unclear and the physical and organizational environment was not conducive to the conversations. The topics of the EOL conversations revolved around a "here-and-now" status of the patient's disease progression and decisions about the level of treatment. To a lesser extent, the conversations included the patient's and relatives' thoughts and wishes concerning EOL, which allowed long-term care planning. CONCLUSION: This study demonstrates that there are several barriers to talking about EOL in an acute care hospital setting, and future strategies must address an overall approach. In order to provide patients and their relatives with better opportunities to express their EOL wishes, there is a need for clearer roles and guidelines in an interdisciplinary approach to EOL conversations, alongside improved staff competencies and changes to the organizational and physical environment.