Khalid, Dalhat Sani
(2019)
Exploring the process and experiences of nursing care of patients at the end of life: nurses’, patients’, and family carers’ perspectives.
PhD thesis, University of Nottingham.
Abstract
Background: Nurses, patients, and family carers in Nigeria face several challenges associated with inadequate resources to care for patients at the end of life. This is evidenced in the recent ranking of palliative and end-of-life care across the world for the 2015 Quality of Death Index by the Economist Intelligence Unit; where Nigeria is at the position 77out of 80 countries. There is a dearth of literature relating to palliative and end-of-life care in Nigeria. A systematic review of end-of-life care in sub-Saharan Africa reveals that most of the studies in sub-Saharan Africa (SSA) were centred on HIV/AIDS, and the majority were in South Africa. No studies were from Nigeria nor found to explore the nurses’ experiences and understanding of caring for patients in hospitals during the end of life. To the researcher’s knowledge, this is the first study to explore the process and experiences of nursing care of patients at the end of life in a hospital from the perspective of nurses, patients, and family carers which justifies the current study.
Research Question: How is nursing care delivered to patients in the hospital at the end of life from the perspective of nurses, patients, and family carers?
Purpose: To explore the process and experiences of nursing care of patients at the end of life from the perspective of nurses, patients, and family carers.
Methodology and Methods: A qualitative ethnographic case study design was employed for the study. Participant observations consisting of 188 hours of observation, and semi-structured interviews with 40 participants (fourteen nurses, twelve patients, and fourteen family carers) were undertaken. Data analysis follows an inductive thematic approach using NVivo 11 qualitative data management programme, guided by an analytical framework identified by Roper & Shapira (2000) and Braun & Clarke (2013).
Findings: The nurses, family carers and other healthcare professionals play significant roles in delivering care to patients. The pattern of care discovered in the study was presented in the form of nurses-family carers care model describing care in three dimensions: care by nurses, care by family carers, and collaborative care. The nurses delivered care to patients at the end of life without a clear pathway or a definitive approach, due to the absence of policies and guidelines. Palliative and end-of-life care is not included in either undergraduate or postgraduate medical and nursing curriculum and is not integrated in the mainstream healthcare system in the country. Both nurses and family carers experienced distress and inadequacies, and are often faced with numerous conflicting situations when the plan of care is perceived to be shifted to end-of-life care. The findings also show expression of mixed feelings about the care, in which the majority of patients and their family carers expressed negative emotions, while others with positive feelings felt that the nurses could do better if provided with the enabling environment. Some of the patients and family carers complained about healthcare professionals withholding information from them. This inadequate information generates tension and anxiety for both patients and their family carers because of fear of unknown circumstances. The participants highlighted several factors that affected the provision of quality patient care such as a shortage of nurses, logistical problems, poor conditions of service, decayed infrastructure, security laxity, and language barrier. Finally, all the participants perceived that the improvement of drug supplies, improvement of staffing levels, provision of rewards/incentives, and continuing education and training of staff could promote good end-of-life care.
Conclusion: The findings showed how nurses and family carers delivered care to patients at the end of life; they carry out various activities to ensure the wellbeing of patients. Both nurses and family carers have varying experiences during end-of-life care ranging from degrees of discomfort and emotional distress to a feeling of fulfilment. It was clear from the findings that most of the patients have their needs unmet at the end of life. Financial problems were a major concern among patients and their family carers because healthcare expenses are paid out-of-pocket. The findings also show that patients and family carers receive insufficient information regarding patient care. While the patients and their family carers expressed dissatisfaction about the care they received, the nurses attributed the poor quality of care to inadequate staffing, decayed infrastructure, logistical problems and poor conditions of service. The study implies that nurses need to engage actively in the care of patients, especially fundamental care. This would provide them with an opportunity to carry out physical assessment during the fundamental care thus reducing the risk of pressure ulcers and other conditions related to immobility and improve interaction with the patients and family carers. Healthcare professionals, policymakers, and all stakeholders need to collaborate on how best to help patients and their family carers and strengthen the healthcare institutions. This could be achieved by introducing palliative and end-of-life care in both undergraduate and postgraduate medical and nursing curriculum, development of policies and guidelines, and integrating palliative and end-of-life care in the mainstream healthcare system in the country.
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