Understanding palliative care in advanced heart failure: a qualitative descriptive study of cultural impact

Background: Heart failure is a complex clinical syndrome that affects more than 65 million people worldwide. Over the next ten years, as the foremost cause of morbidity, mortality, and disability, heart failure could overwhelm the global health infrastructure. Palliative care is intended to relieve symptoms, reduce the burden of severe illness, and improve the quality of life for patients and their families. However, the complexity of palliative care in heart failure is compounded by contextual factors and the often neglected role of culture on peoples’ experiences and understanding. Understanding patients’ situational and contextual circumstances is implicit in any application of effective palliative care, this thesis explores the impact of culture on palliative care for people with advanced heart failure from diverse backgrounds by focusing on individual understandings. Methods: A two-step qualitative descriptive design was used, consisting of a mixed-methods systematic review (Phase 1) and a qualitative descriptive study (Phase 2). Phase 1 incorporated a systematic review of quantitative and qualitative data from scientific and grey literature databases. In total, 13 articles were identified as eligible and thematically analysed, synthesised, and presented. In Phase 2, focus group discussions were utilised to explore the understanding of palliative care in heart failure among people from diverse backgrounds as situated in cultural contexts. Data were purposively collected from seven one-off focus groups, consisting of 55 adult participants. Group discussions were audio-recorded, transcribed, and analysed using reflexive thematic analysis. The project was underpinned by critical realism philosophy, conceptually followed the development phase of the Medical Research Council (MRC) Framework and was theoretically guided by the PEN-3 cultural model. Findings: Phase 1. The findings indicated that the influences of the culture on the HF understanding was seen as iterative and ongoing evident by the three overlapping themes, namely lay knowledge and beliefs, understanding and reporting symptoms, and understanding of self-care. Patients’ understanding of and response to symptoms were strongly linked to their cultural beliefs. Patients from Eastern and Middle Eastern countries somatised their symptoms to a greater extent, whereas patients from Western cultures reported higher symptom distress scores. People’s cultural beliefs about health and disease inform lay knowledge of the diagnosis, causes, treatment, and self-care of heart failure and can thus determine people’s healthcare decisions and behaviours, and their access to and utilisation of healthcare services. Phase 2. Three themes were constructed: (1) culturally embedded understanding of heart failure, in which participants interpreted the illness in terms of a combination of their worldviews and experiences; (2) understanding of palliative care for patients with heart failure, in which context is crucial to unravelling the interpretations and mechanisms by which the process of palliative care is understood; (3) preferences for care, which broadly reflect values indicating which choices are influenced but not controlled by the interplay of illness and cultural understandings. In combination, these three themes highlight the complexity of people’s choices and preferences at the end of life, as contextual responses inform decisions that are made in response to changing health circumstances and care experiences. Conclusion: The results show that people’s understanding of heart failure drives the utilisation of palliative care services, and a lack of understanding is one reason for service failures. People’s cultural background and life experiences underpin their care preferences and decisions during palliative care for heart failure; therefore cultural knowledge is critical to understanding behaviours. The complexity of the context and the uniformity of findings with regard to the cultural understanding of heart failure can both help and hinder access to palliative and end-of-life care services. To enable people from diverse backgrounds to access palliative care, it is necessary to develop a language for talking about heart failure, images, visuals or models, that transcends cultural interpretations and enhances optimal understanding for people from diverse backgrounds. An understanding of cultural beliefs, values, and preferences, together with effective cross-cultural encounters, must become embedded in the development and delivery of culturally aware palliative care interventions

Automatic Service Composition. Models, Techniques and Tools.

Maurizio Lenzerini, Giuseppe De Giacomo, Massimo Mecell

Towards Interoperable Research Infrastructures for Environmental and Earth Sciences

This open access book summarises the latest developments on data management in the EU H2020 ENVRIplus project, which brought together more than 20 environmental and Earth science research infrastructures into a single community. It provides readers with a systematic overview of the common challenges faced by research infrastructures and how a ‘reference model guided’ engineering approach can be used to achieve greater interoperability among such infrastructures in the environmental and earth sciences. The 20 contributions in this book are structured in 5 parts on the design, development, deployment, operation and use of research infrastructures. Part one provides an overview of the state of the art of research infrastructure and relevant e-Infrastructure technologies, part two discusses the reference model guided engineering approach, the third part presents the software and tools developed for common data management challenges, the fourth part demonstrates the software via several use cases, and the last part discusses the sustainability and future directions

Semantic discovery and reuse of business process patterns

Patterns currently play an important role in modern information systems (IS) development and their use has mainly been restricted to the design and implementation phases of the development lifecycle. Given the increasing significance of business modelling in IS development, patterns have the potential of providing a viable solution for promoting reusability of recurrent generalized models in the very early stages of development. As a statement of research-in-progress this paper focuses on business process patterns and proposes an initial methodological framework for the discovery and reuse of business process patterns within the IS development lifecycle. The framework borrows ideas from the domain engineering literature and proposes the use of semantics to drive both the discovery of patterns as well as their reuse

An Institutional View of Resource Integration Misalignment in Projects

Projects as the most tangible manifestation of temporary organizations are playing a significant role in mobilizing resources and navigating constant changes and disruptions in the business environment. Project actors with different institutional affiliations usually join together to accomplish tasks within a limited period of time. Due to the inherent tension between projects’ temporariness and the institutions’ stability, actors with their heterogeneous institutional prescriptions often encounter institutional misalignments, which may be the obstacles in ensuring on-time, on-quality, and on-budget project deliveries. Given the theoretical sophistication and fragmentation in project literature, an integrated framework of project research is provided in this work. In response to the weakness in current theorizing about how institutional forces manifest themselves in projects and how project processes interact with the wider institutional context, this research proposes a new ontology of temporary organizations by drawing implications from institutional theory and service-dominant logic. The micro-level interactions in both intra- and inter-organizational projects are examined with the qualitative methodology. This research reveals the actuality of projects’ multilevel-embeddedness and provides a framework of 18 dimensions of institutional (mis)alignments. A toolkit solution comprising four categories of 27 resource integration enabling practices (RIEP) aggregated from 376 actions taken by practitioners is also presented for the reconciliation of the institutional misalignments in practice