Experiences of patients living and dying with advanced heart failure in Kenya: a qualitative serial interview study

Abstract

Background The number of people in Sub-Saharan Africa dying of heart failure is increasing. However, little is known about their experiences and needs. In Kenya, palliative care services are available for some people with cancer and HIV/AIDS, but these services may not be configured to meet the needs of patients dying with heart failure. Aims and objectives This study aimed to explore the experiences of patients living and dying with heart failure in Kenya. Specifically, it sought to understand how patients describe their illness experience, their experience of receiving treatment and care, and their perspectives on how their care could be improved. Methods Twenty patients admitted and diagnosed with advanced heart failure were purposively recruited from a rural district hospital. Serial in-depth interviews were conducted with patients at 0, 3 and 6 months after recruitment. Bereavement interviews were carried out with carers. All interviews were conducted and recorded in the local language of Kiswahili, transcribed into English and analysed thematically with the assistance of Nvivo software. Results Forty-four interviews were conducted. Three significant phases were identified in patients’ experience (i) coming to a diagnosis, (ii) living with heart failure and (iii) dying with heart failure. Before receiving the diagnosis of heart failure, many patients were mistakenly misdiagnosed with common serious infectious conditions such as pneumonia, tuberculosis, and malaria. Once treatment commenced and physical symptoms abated, many patients were hopeful of a full recovery, unaware that there would be a progressive deterioration in their health. Social relationships were a source of encouragement but were strained by the accumulating cost of care. Patients particularly those who were younger, felt anxious or depressed when symptoms failed to improve with treatment. Uncertainty was prevalent and underlay patients’ experiences from the time of diagnosis to the end of life. Very few patients spoke about the possibility of death believing that life and death are in the hand of God. Majority of patients had poor understanding of their illness and expressed a need for more information and better communication with health professionals. Conclusion Patients with advanced heart failure in Kenya have significant unmet physical, psychological, social, spiritual, financial, and information needs. Patients’ narratives pointed to how they could benefit from a holistic approach aimed at catering for their multidimensional wellbeing. There is need to improve patients access to information and support better communication with health professionals. Chronic disease management aimed at (i) early identification of patients (ii) improving treatment and care guidelines and (iii) promoting primary and secondary prevention to identify, treat and control common risk factors for heart failure is needed.