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

Alassoud, Bahaa Ahmed I. (2022) Understanding palliative care in advanced heart failure: a qualitative descriptive study of cultural impact. PhD thesis, University of Glasgow.

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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.

Item Type: Thesis (PhD)
Qualification Level: Doctoral
Subjects: R Medicine > R Medicine (General)
Colleges/Schools: College of Medical Veterinary and Life Sciences > School of Medicine, Dentistry & Nursing
Supervisor's Name: Johnston, Professor Bridget and Hogg, Dr. Karen
Date of Award: 2022
Depositing User: Theses Team
Unique ID: glathesis:2022-83167
Copyright: Copyright of this thesis is held by the author.
Date Deposited: 07 Oct 2022 10:30
Last Modified: 07 Oct 2022 10:33
URI: https://theses.gla.ac.uk/id/eprint/83167
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