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Living Under the Threat of Ebola: a Phenomenological Study By LIVING UNDER THE THREAT OF EBOLA: A PHENOMENOLOGICAL STUDY by AMANDU GERALD MATUA submitted in accordance with the requirement for the degree of DOCTOR OF LITERATURE AND PHILOSOPHY in the subject Health Studies at the UNIVERSITY OF SOUTH AFRICA PROMOTER: PROF. DM VAN DER WAL January 30, 2014 i Student Number: 351 - 438 - 00 DECLARATION I declare that “LIVING UNDER THE THREAT OF EBOLA: A PHENOMENOLOGICAL STUDY” is my own work and all the sources that I have used or quoted have been indicated and acknowledged by means of complete referencing and that this work has not been submitted before for any other degree at any other institution. ................................... .......................... Amandu Gerald Matua Date ii ACKNOWLEDGEMENTS “The Lord is a merciful and loving God, always patient, always kind and faithful” (Psalm 86:15) I am exceedingly grateful to the Lord Almighty for giving me strength and endurance to complete this study amidst countless odds. May His most abundant grace endure forever! I also express my gratitude to all persons and institutions that contributed towards the successful completion of this doctoral thesis, particularly the outstanding contribution of: The Health Studies Higher Degrees Committee, UNISA, Mildmay-Uganda, Uganda National Council for Science and Technology, Uganda and the Resident District Commissioner, Kibale, for granting me permission to undertake this research study. University of South Africa Administration through the Directorate of Student Funding for selecting me for the prestigious UNISA postgraduate bursary in my final year of studies. Ebola survivors and their close family members who participated in the study, surely without their participation, this study would have been in vain, for this I am appreciative. Colleagues Ms. Evelyn Ayot, Ms. Rhoda S. Muliira, Dr. Joshua K. Muliira and Dr. Johanna Jacoba van der Colff and Richard Sserioza for their constant encouragement. Mr. Hassan Bassajjabalaba my former employer for contributing towards my tuition fees in the early part of my studies at UNISA. I will always be grateful for this generous offer. iii My mentors, Prof. Rozzano C. Locsin, Prof. Frederick I.B. Kayanja, Dr. Ruth Macfreey, Dr. Margaurite Purnell, Mr. Daniel Gerber and Mrs. Janet Gerber for their years of parental guidance, confidence and inspiration. Professors Ganga Limando and Louise de Villiers, my former promoters, who each offered significant insights in shaping this thesis and giving it an initial burst of energy. Professor Frederick J. Wertz of Fordham University, USA for very generously sharing his scholarly works with me and trusting me to adapt them to analyse my research data. My brothers George, Gilbert, Julius and sisters Bibian, Justine and Jane for their prayer. My wife Akello Doreen Amandu for always being there and never giving up. My loving children Rozzano Locsin Econi Jr and Godsend Noela Amandu for their love, understanding and enduring patience throughout the study. The Research Assistants Madira Atwooki, Angude Gilbert Matua, Birungi Juliet Kalyegira, Jane Rose Matua, Catherine Najjemba, Rosemary Akugizibwe and Francis Akiki who all deserve my very special appreciation for without their relentless efforts and quality work, this research would not have been completed within the desired time frame. Most importantly, Professor Dirk Mostert van der Wal, my thesis supervisor and promoter, mentor, counsellor and friend for his unwavering, enduring support and for patiently guiding me throughout the study. His careful suggestions helped to deepen my understanding of research and scholarship in nursing. In a very special way, I will always remember Professor van der Wal for standing by me, at times alone, even when all hope seemed to have been lost and the road ahead appeared but dark. Finally, may God reward all those who contributed in various ways to this work! iv DEDICATION This scholarly enterprise is wholeheartedly dedicated to my beloved parents, Peter Quirino Matua Acile and Lorina Atrabiro Anderu Matua who made me what I am today, and for earnestly and unceasingly teaching me the value of discipline and instilling in me the desire to cherish lifelong learning especially striving to excel even in the face of challenges. In equal measure, I also dedicate this work to all health workers, particularly nurses and student nurses who have contracted and succumbed to Ebola infection while on duty. You are truly the unsung heroes of our time, ultimately laying down your own lives so that others may live. May God grant you eternal peace and forever bless the families you left behind! v LIVING UNDER THE THREAT OF EBOLA: A PHENOMENOLOGICAL STUDY STUDENT NUMBER: 351- 438- 00 STUDENT NAME: AMANDU GERALD MATUA DEGREE: DOCTOR OF LITERATURE AND PHILOSOPHY DEPARTMENT: HEALTH STUDIES, UNIVERSITY OF SOUTH AFRICA SUPERVISOR: PROF. DIRK MOSTERT VAN DER WAL ABSTRACT This study articulates the phenomenon of living under a constant threat of Ebola haemorrhagic fever, including what people’s reactions towards individuals and families affected by the illness symbolizes as well as the meanings ascribed to Ebola. The study was conducted in Kibale district in Midwestern Uganda to aid understanding of the human aspects of Ebola which has continued to result in widespread fear and anxiety, thereby creating challenges for affected individuals, families and health care professionals. A phenomenological inquiry was undertaken using Wertz’s (1983, 2005, 2011) empirical psychological reflection approach for data analysis, after utilizing purposive, convenience and criterion sampling techniques to select twelve (12) adult survivors and caregivers who anticipated, experienced and survived the outbreak and were in good health and also willing to take part in the study. Data were generated using in-depth qualitative interviews and the interviews continued until data redundancy was reached. The interview proceedings were digitally audio-recorded in addition to taking field notes and these were transcribed verbatim. Data analysis occurred at idiographic and nomothetic levels according to the principles of Wertz’s empirical psychological reflection. vi Thematic analysis of the research data revealed seven (7) themes, namely: Living under constant threat of Ebola Nature of Ebola experience: unique and general meanings Surviving Ebola: physical, psychological, social, spiritual and economic implications on survivors Caring for Ebola patients: social and psychological implications Public reaction toward persons affected by Ebola Social-cultural beliefs and practices related to Ebola Coping with and living in the aftermath of Ebola outbreaks Adaptation emerged as the single most encompassing and accommodating concept that united the various themes, categories and sub-categories. It further grounded survivors’, caregivers’ and community’s experience of anticipating, experiencing and coping with challenges associated with Ebola. The findings add substantial knowledge about how survivors and caregivers experience Ebola outbreaks. Important recommendations are made and guidelines that may be used to increase survivors’, caregivers’ as well as the community’s resilience to challenges of future Ebola outbreaks are suggested. KEY WORDS Ebola, threat, phenomenology, lived experience, survivors, family caregivers, fear, stigma, ostracism, coping, adaptation, resilience, Kibale, Uganda. vii TABLE OF CONTENTS PAGE CHAPTER 1: BACKGROUND AND ORIENTATON TO THE STUDY ................................. 1 1.1. INTRODUCTION ..................................................................................... 1 1.2. BACKGROUND TO THE STUDY ............................................................ 2 1.2.1. Geographic and demographic details of Kibale District ......................... 2 1.2.2. Cultural classification, beliefs and practices related to human disease . 3 1.2.3. Nature of Ebola haemorrhagic infection ................................................ 5 1.2.4. Summary of Ebola outbreaks in Uganda ............................................... 8 1.2.5. Current management practices of Ebola epidemics ............................ 17 1.2.6. Psycho-social consequences of Ebola outbreaks ............................... 19 1.3. THE PROBLEM STATEMENT ............................................................... 21 1.4. RESEARCH PURPOSE ......................................................................... 22 1.5. RESEARCH OBJECTIVES .................................................................... 23 1.6. THE GUIDING RESEARCH QUESTIONS ............................................. 23 1.7. RESEARCH PARADIGM ....................................................................... 24 1.8. RESEARCH DESIGN AND METHOD .................................................... 25 1.8.1. The Research Design .......................................................................... 26 1.8.2. Research Method ................................................................................ 26 1.9. MEASURES TO ENSURE TRUSTWORTHINESS ................................ 30 1.10. META -THEORETICAL FOUNDATIONS OF THE STUDY .................. 30 1.10.1. Ontological assumptions ................................................................... 31 1.10.2. Epistemological assumptions ............................................................ 31 1.10.3. Methodological assumptions ............................................................. 31 1.10.4. Axiological assumptions ...................................................................
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