Health services research on end-of-life care

2009 ◽  
Vol 3 (3) ◽  
pp. 190-194 ◽  
Author(s):  
Massimo Costantini ◽  
Monica Beccaro
Author(s):  
Tinne Smets ◽  
Luc Deliens

Health services research in palliative care and end-of-life care involves the study of palliative care needs, access and quality of palliative care, and the feasibility, effectiveness, and cost of palliative and end-of-life care services and interventions. The evaluation of services and interventions involving patients with advanced illness presents unique challenges, both ethical and methodological. In this chapter, several research designs that are useful for the service evaluation of complex interventions in palliative care and end-of-life care are discussed and examples of studies using these designs are described. The designs that are described include both experimental and non-experimental designs. The problems and challenges that doing research with dying patients presents are subsequently described and possible solutions proposed. The challenges dealt with in this chapter include defining the intervention, determining relevant outcome measures, randomization of patients to intervention and control group, achieving recruitment and minimizing attrition, heterogeneity of the patient group, and obtaining informed consent.


2021 ◽  
pp. 1328-1334
Author(s):  
Tinne Smets ◽  
Luc Deliens

Clear information about the effectiveness of services and interventions is often lacking in palliative care service planning. The development of palliative care services and interventions should be based on evidence that they will increase the likelihood of desired outcomes, but also understanding the process of the intervention and how it might work in practice are vital in building an evidence base that informs policy and practice. Health services research in palliative care covers topics such as palliative care needs, access to palliative care, quality of care and feasibility, effectiveness, and cost of palliative care services and interventions. Patients needing palliative care often have complex needs and require complex services and interventions. The Medical Research Council guidance for developing, evaluating, and implementing complex interventions, the MORECare statement on ‘best practice’ methods for research evaluating end of life care, and the Medical Research Council guidance on process evaluation offer useful support for researchers undertaking health services research. To evaluate complex services and interventions, a wide ranch of study designs can be used. Studies that enrol patients with advanced illness present unique challenges, both ethical and methodological.


2018 ◽  
Vol 8 (3) ◽  
pp. 370.1-370 ◽  
Author(s):  
Ishrat Islam ◽  
Anthony Byrne ◽  
Annmarie Nelson

IntroductionA major challenge in developing new models of palliative care is to identify the current needs of the public patients and carer (Dixon 2015). There is a lack of evidence on people’s attitudes towards end of life care (EoLC) in Wales.AimTo increase understanding of people’s feelings views knowledge and preferences around EoLC.MethodAn online survey was conducted using an electronic survey tool. Descriptive statistics and thematic analysis were used to perform data analysis.Results2210 people (Age: Mean +SD; 55+14 years) participated in the survey 43% of those were members of the general public 29% were patients/carers and 23% were health professionals. 49% of respondents thought that available palliative care was inadequate and 92% believed that end of life care for dying people should have equal priority for the NHS. 95% of respondents thought that expressing preferences around EoLC in advance was important but only 13% had done this in practice and 60% did not know how to plan their EoLC. However the top three needs in EoLC were identified as having a trained carer (84%) access to other professionals (59%) and emergency care (44%). The top three preferences for EoLC were being surrounded by loved ones (62%) maintaining dignity (55%) and a feeling of peace (40%). Just 24% respondents would chose to be at home while receiving EoLC.ConclusionsUnderstanding public attitudes is essential to understanding changing contexts of care. Developing a need-based palliative care model enhances an effective service delivery.Reference. Dixon J, et al. Equity in the provision of palliative care in the UK: Review of evidence2015;pg. 1–145. London: Personal Social Services Research Unit. Available at: https://www.mariecurie.org.uk/globalassets/media/documents/policy/campaigns/equity-palliative-care-uk-report-full-lse.pdf


2016 ◽  
Vol 25 (6) ◽  
pp. 760-772 ◽  
Author(s):  
Megan-Jane Johnstone ◽  
Helen Rawson ◽  
Alison Margaret Hutchinson ◽  
Bernice Redley

Background: Trust has been identified as a vital value in the nurse–patient relationship. Although increasingly the subject of empirical inquiries, the specific processes used by nurses to foster trust in nurse–patient relationships with older immigrants of non-English speaking backgrounds hospitalised for end-of-life care have not been investigated. Aims: To explore and describe the specific processes that nurses use to foster trust and overcome possible cultural mistrust when caring for older immigrants of non-English speaking backgrounds hospitalised for end-of-life care. Research design: A qualitative descriptive approach was used. Twenty-two registered nurses were recruited from four metropolitan health services in Melbourne, Australia. Ethical considerations: Research approval was granted by the Human Research Ethics Committees of the host institution and four participating health services. Findings: Thematic analysis revealed that fostering trust encompassed the following three commensurate stages: establishing trust, strengthening trust and sustaining trust. Underpinning the successful achievement of these stages was the nurses’ moral commitment (reflected in their intentional, conscious and conscientious approach) to fostering trust as an essential ingredient of quality end-of-life care. Discussion: This study has shown that while professional competencies are important to providing quality end-of-life care to older immigrant patients of non-English speaking backgrounds, it is a nurse’s moral commitment to fostering trust that may ultimately lay the foundations for a trusting quality care relationship to be established and sustained. Conclusion: This study has captured the processes used by nurses to foster trust as an essential element of quality end-of-life care in older immigrants. The characteristics of trust and the different factors influencing its expression in diverse cultural contexts are, however, under-researched. Accordingly, gaps remain in the knowledge and understanding of the specific cultural nuances and manifestations of trust across and within different cultures. This is an area that is germane to further cross-cultural and international collaborative scholarly inquiry and research.


2007 ◽  
Vol 7 (2) ◽  
pp. 184-188 ◽  
Author(s):  
Yoshihisa Hirakawa ◽  
Yuichiro Masuda ◽  
Masafumi Kuzuya ◽  
Akihisa Iguchi ◽  
Kazumasa Uemura

2016 ◽  
Vol 34 (15_suppl) ◽  
pp. 10521-10521
Author(s):  
Sumit Gupta ◽  
Rinku Sutradhar ◽  
Jason D Pole ◽  
Alisha Kassam ◽  
Adam Rapoport ◽  
...  

2021 ◽  
Vol 9 (20) ◽  
pp. 1-76
Author(s):  
Neil H Chadborn ◽  
Reena Devi ◽  
Christopher Williams ◽  
Kathleen Sartain ◽  
Claire Goodman ◽  
...  

Background Organising health-care services for residents living in care homes is an important area of development in the UK and elsewhere. Medical care is provided by general practitioners in the UK, and the unique arrangement of the NHS means that general practitioners are also gatekeepers to other health services. Despite recent focus on improving health care for residents, there is a lack of knowledge about the role of general practitioners. Objectives First, to review reports of research and quality improvement (or similar change management) in care homes to explore how general practitioners have been involved. Second, to develop programme theories explaining the role of general practitioners in improvement initiatives and outcomes. Design A realist review was selected to address the complexity of integration of general practice and care homes. Setting Care homes for older people in the UK, including residential and nursing homes. Participants The focus of the literature review was the general practitioner, along with care home staff and other members of multidisciplinary teams. Alongside the literature, we interviewed general practitioners and held consultations with a Context Expert Group, including a care home representative. Interventions The primary search did not specify interventions, but captured the range of interventions reported. Secondary searches focused on medication review and end-of-life care because these interventions have described general practitioner involvement. Outcomes We sought to capture processes or indicators of good-quality care. Data sources Sources were academic databases [including MEDLINE, EMBASE™ (Elsevier, Amsterdam, the Netherlands), Cumulative Index to Nursing and Allied Health Literature, PsycInfo® (American Psychological Association, Washington, DC, USA), Web of Science™ (Clarivate Analytics, Philadelphia, PA, USA) and Cochrane Collaboration] and grey literature using Google Scholar (Google Inc., Mountain View, CA, USA). Methods Realist And Meta-narrative Evidence Syntheses: Evolving Standards (RAMESES) guidelines were followed, comprising literature scoping, interviews with general practitioners, iterative searches of academic databases and grey literature, and synthesis and development of overarching programme theories. Results Scoping indicated the distinctiveness of the health and care system in UK and, because quality improvement is context dependent, we decided to focus on UK studies because of potential problems in synthesising across diverse systems. Searches identified 73 articles, of which 43 were excluded. To summarise analysis, programme theory 1 was ‘negotiated working with general practitioners’ where other members of the multidisciplinary team led initiatives and general practitioners provided support with the parts of improvement where their skills as primary care doctors were specifically required. Negotiation enabled matching of the diverse ways of working of general practitioners with diverse care home organisations. We found evidence that this could result in improvements in prescribing and end-of-life care for residents. Programme theory 2 included national or regional programmes that included clearly specified roles for general practitioners. This provided clarity of expectation, but the role that general practitioners actually played in delivery was not clear. Limitations One reviewer screened all search results, but two reviewers conducted selection and data extraction steps. Conclusions If local quality improvement initiatives were flexible, then they could be used to negotiate to build a trusting relationship with general practitioners, with evidence from specific examples, and this could improve prescribing and end-of-life care for residents. Larger improvement programmes aimed to define working patterns and build suitable capacity in care homes, but there was little evidence about the extent of local general practitioner involvement. Future work Future work should describe the specific role, capacity and expertise of general practitioners, as well as the diversity of relationships between general practitioners and care homes. Study registration This study is registered as PROSPERO CRD42019137090. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 20. See the NIHR Journals Library website for further project information.


Sign in / Sign up

Export Citation Format

Share Document