Community-based palliative care in two primary care settings - nursing homes and home care: a national survey.

AIMS: Based on selected themes from a national survey, the study aims to describe and analyse similarities and differences in community-based palliative care provided to people living at home in two different care settings - the nursing home setting and the home care setting. METHODS: Responses from four palliative care themes covered by a national survey sent to 717 managers in municipality-based care units were used. The themes were: (a) target groups in palliative care; (b) wishes for end-of-life care; (c) tools/guidelines in palliative care; and (d) palliative care provided to relatives. RESULTS: The response rates were 53% in the nursing home setting and 69% in the home care setting (69%). Both settings had target groups for palliative care, in which significantly more units in the home care settings cared for people with other cultural backgrounds or children. Wishes for end-of-life care were addressed by more than 90% of the units in both settings. There were significantly more nursing home units that addressed questions regarding resuscitation, decision making when you are incapable of making decisions for yourself, and the level of medication. In both settings, around half of the units did not use or did not know if they used tools/guidelines to identify palliative care needs. Half of home care and 65% of nursing home settings did not/were unaware of providing palliative care to relatives. CONCLUSIONS: Both settings serve target populations for palliative care with few differences. Identifying palliative care needs seemed to be a low priority in both settings. A difference was found between the settings regarding end-of-life care questions and palliative care promotion to relatives.

When and how to stop palliative antineoplastic treatment and to organise palliative care for patients with incurable cancer.

BACKGROUND: Improving the organisational aspects of the delivery of palliative care in order to support patients throughout their disease trajectory has received limited attention. AIM: To investigate the opportunities and barriers related to organising palliation for people with terminal cancer and their families. METHODS: An explorative interview study was conducted among 31 nurses and three physicians concerning an intervention facilitating a fast transition from treatment at a cancer centre at a university hospital to palliation at home. A thematic analysis was conducted. FINDINGS: This article presents three out of seven themes: 1) improvement in the cessation of antineoplastic treatment in palliation; 2) improvement in organisations delivering palliation; and 3) improvement in multidisciplinary and cross-sectoral collaboration. CONCLUSIONS: The results demonstrate the demand for flexible, family-centred and integrated palliation at all levels, from communication and the collaborative relationship between healthcare professionals and families to service sectors.

Combined rehabilitation and palliative care interventions for patients with life-threatening diseases - PREGOAL. A scoping review of intervention programme goals.

PURPOSE: WHO recommends integrating rehabilitation into palliative care when providing services for people with life-threatening conditions. Recently, there has been increasing interest in exploring how rehabilitation and palliative care approaches could be combined. The aim of this study was to map and discuss the goals of intervention programmes that combine rehabilitation and palliative care. METHODS: A scoping review was performed. The electronic databases MEDLINE, EMBASE, and CINAHL were searched for papers published between January 2014 and September 2022. Papers were considered eligible if the participants in question had a life-threatening disease and if interventions included both rehabilitation and palliative care. All study types were included. RESULTS: Ten papers describing five interventions were included. Qualitative goals were narratively described, and quantitative goals were analysed according to the International Classification of Functioning, Disability and Health, and the Total Pain framework. Findings showed an overall focus on functioning and quality of life. Further analysis indicated an emphasis on physical and psychological dimensions. Social participation, and the social and spiritual dimensions were rarely evaluated. CONCLUSION: This review indicates that goals relative to social participation, the social and spiritual dimensions, and the patient's own goals may well be overlooked as points of orientation for interventions.

There is an increasing interest in combining palliative care and rehabilitation approaches in clinical work.When rehabilitation and palliative care are combined, goals may be overlooked, and the patient's own goals can be used as a point of orientation for interventions.Future practice should pay special attention to subjective goals, social participation, and the social and spiritual dimensions when combining rehabilitation and palliative care.

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.

The Bangladeshi Rights and Protection of Persons With Disability Act of 2013: A Policy Analysis.

The government of Bangladesh enacted the Rights and Protection of Persons with Disability Act of 2013 (the Act) in line with the United Nations Convention on the Rights of Persons with Disabilities. This article sheds light on the Act with particular emphasis on (a) support offered to children with disabilities (CWDs) and their families to address their needs; and (b) the extent to which the Act is in line with the international disability policy analysis framework. We compared the Act with the 18 core concepts of disability policy developed by Turnbull et al. (2001). The results affirm the government's effort toward Sustainable Development Goals in providing support to CWDs and their families. They indicate a high degree of congruency of the Act with the core concepts. The findings also highlight the need to embrace the concepts of autonomy, confidentiality, and family-centeredness in great detail in any policy initiatives pertaining to CWDs. Furthermore, the finding shows that collaboration and coordination among ministries are imperative to achieve the goal of policies related to disability. In addition, the results highlight the need for more budgetary allocation and robust monitoring systems to track the progress of policy initiatives. As policy implementation is affected by changes in global contexts such as the coronavirus disease 2019 pandemic, policymakers in Bangladesh and other low- and middle-income countries should ensure that emergency responses are disability-inclusive and appropriate for CWDs. To ensure a disability-inclusive response, it is critical to engage individuals with disabilities and their families in meaningful consultations to identify their needs.

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.

Palliative care for older South Asian migrants: A systematic review.

OBJECTIVE: South Asian migrants have a higher burden of life-threatening diseases and chronic diseases compared to other ethnic groups. Yet, knowledge gaps remain around their palliative care needs in the host countries. The aim of the review was to present results from a systematic literature review of available international evidence on experiences with and perspectives on palliative care among older South Asian migrants, relatives, and healthcare providers. METHODS: A systematic review in accordance with PRISMA guidelines was conducted in February 2018, searching PubMed, CINAHL, PsychINFO, and EMBASE databases. PROSPERO #CRD42018093464. Studies included empirical research, providing international evidence on experiences and perspectives on palliative care of South Asian migrants and were published between 2000 and 2018. Thematic synthesis was used to analyze data. RESULTS: A total of 30 articles were included: qualitative (24), quantitative (5), and mixed methods (1). Three main themes were discovered: 1) palliative care practice within the family, 2) trust as a precondition of palliative care, and 3) the importance of knowledge and cultural competency. All the themes, to a greater or lesser extent, are related to access to and use of palliative care services by South Asian migrant families. SIGNIFICANCE OF RESULTS: Involvement of family members in palliative care decision making could improve the satisfaction of South Asian migrant families toward the service. For example, Advanced Care Planning involving family members could be a possible way to engage family members in palliative care decision making. Supportive interventions, e.g. providing knowledge, aimed at patients and their family members might improve knowledge and increase awareness among South Asian migrant families of palliative care. Knowledge gained from this review could be implemented with other ethnic minority groups.

Economic empowerment of women and utilization of maternal delivery care in bangladesh.

OBJECTIVE: Maternal mortality is a major public health problem in low-income countries, such as Bangladesh. Women's empowerment in relation to enhanced utilization of delivery care is underexplored. This study investigates the associations between women's economic empowerment and their utilization of maternal health care services in Bangladesh. METHODS: In total, 4925 women (15-49 years of age) with at least one child from whole Bangladesh constituted the study sample. Home delivery without skilled birth attendant and use of institutional delivery services were the main outcome variables used for the analyses. Economic empowerment, neighborhood socioeconomic status, household economic status, and demographic factors were considered as explanatory variables. The chi square test and unadjusted and adjusted logistic regression analyses were applied at the collected data. RESULTS: In the adjusted model, respondent's and husband's education, household economic status, and residency emerged as important predictors for utilization of delivery care services. In the unadjusted model, economically empowered working and microfinanced women displayed more home delivery. CONCLUSION: The current study shows that use of delivery care services is associated with socioeconomic development and can be enhanced by societies that focus on general issues such as schooling, economic wellbeing, and gender-based discrimination.