THE UNIVERSITY OF HULL Experiences of Women with Obstetric Fistula in Nigeria: A Narrative Inquiry A Thesis Submitted to the University of Hull in Fulfilment of the Award of Degree of Doctor of Philosophy in Health Studies By Hannah Mafo Degge MPH (2011) University of Leeds, UK April 2018 DEDICATION In loving memories of my beloved husband, Abraham Degge (who believed in me and set me on the path to doing a PhD) and my beloved son Boyesoko Degge (too wonderful a son to be forgotten) And to the brave women, who shared their stories- “A voice to make maternal healthcare accessible to all” ii ACKNOWLEDGEMENT The PhD journey has been a long and hard journey that would have been impossible to achieve without the kindness, support and encouragement of numerous people. First and foremost, I sincerely and deeply appreciate my supervisors, Prof Mark Hayter and Dr Mary Laurenson, for their thorough and relentless guidance, support and encouragement all through the study process. I acknowledge with deep gratitude Dr Moira Graham, Research Director, Faculty of Health Sciences for your ceaseless words of encouragement and support. I wish to also acknowledge the support of EVVF centre, BHUTH, and particularly the director, Dr Sunday Lengmang for the encouragement and sustained motivation to do this research. My parents Chief and Mrs. Andrew Aileku OFR, my brothers and sisters and their families, who stood solidly behind me in this journey. I sincerely appreciate your prayers, support and encouragement, that kept me moving on throughout the study period. My PhD colleagues who became like a family to me, too numerous to mention, I appreciate the support and encouragements of Sheena McRae, Love Onuorah, Yetunde Atayeiro, Franklin Onwukgha, and Peninah Agaba, challenging me to keep moving forward. I sincerely appreciate special friends that stood by me worthy of mention: Prof Leonard Fwa, for believing I could make it and supporting me through this journey, Pat and Abraham Otsapas, Fadeke and Abraham Awobem, James and Rose Masamha, and my Jubilee family; for taking my boys and I into your families and doing all your best to make our stay in UK a wonderful one, I am deeply grateful. And I am grateful to friends who have become more like sisters-Lily Asare, Blessing Eseke, Bimpe Oyeyipo, Tope Eboigbe, Ngozi Olulana, Christy Fola-Toluhi, Akpos Osim, Marion Osuide, Dorcas Omeire holding my hands, praying for me, ever ready to listen, encourage and assist my family. And to my beloved sons, Ayemlo and Nimmo Degge, for being such loving and wonderful children; for supporting me all these years of my academic pursuit and bearing the brunt of having a ‘studying mum’, I am deeply grateful it all helped greatly to make this a reality. iii ABSTRACT Obstetric Fistula is an abnormal opening between the vagina and rectum resulting from prolonged and obstructed labour. It occurs mostly in developing countries and is a neglected maternal health issue in Nigeria. Women’s experiences of living with fistula often reflect gender inequities. This study explored how women attending a reintegration service described their experiences of living with fistula. Using narrative inquiry methodology, 15 women (treated and rehabilitated) were interviewed. Data were analysed using the core story creation and emplotment method of narrative analysis. A reconstructed narrative provided plot headings of ‘fistula ordeal, treatment process, and returning to life’. Fistula formation was linked to the influence of others, geographical remoteness and transport and poor health systems. Fistula survivors and families facilitated access to treatment; aided to cope with incontinence that triggered stigma issues. Negative identity changes through incontinence were: ‘Leaking’ identity, ‘Masu yoyon fitsari’ (the leakers of urine identity), and ‘spoiled’ identity. Attending the repair centre conferred hope and relief through mutual survivors (‘Masu yoyon fitsari’) support. ‘Spoiled’ identity reflected the challenges of the ‘leaking’ identity in the face of ‘failings’ as a woman with respect to sexual and reproductive responsibilities. Reversing the negative identities was pivotal in the women’s resilience in seeking a cure. The ‘improved’ identity achieved after fistula repair and rehabilitation provided continence control and improved financial status. This research is the first known comprehensive empirical study of the experiences of treated and rehabilitated obstetric fistula survivors in Nigeria. The prevalence of fistula in Nigeria reflects inequitable distribution of health care compounded by socio-cultural practices. This research is the first application to women’s health in the African context using Frank’s narrative typology. The study contributes to the empirical evidence of women’s pathway through developing fistula, to treatment, and rehabilitation into family and community life in Nigeria. iv TABLE OF CONTENT DEDICATION ................................................................................................................................... ii ACKNOWLEDGEMENT ................................................................................................................... iii ABSTRACT ...................................................................................................................................... iv TABLE OF CONTENT ....................................................................................................................... v LIST OF ABBREVIATIONS .............................................................................................................. xii RESEARCH/ PUBLICATIONS ......................................................................................................... xiii CHAPTER ONE ............................................................................................................................... 1 INTRODUCTION AND BACKGROUND TO STUDY ........................................................................... 1 1.0 Introduction to Chapter ................................................................................................ 1 PART A: Introduction of Study ................................................................................................. 1 1.1 Thesis Overview .................................................................................................................. 1 1.2 Rationale for Study ............................................................................................................. 3 PART B: Research Context ........................................................................................................ 6 1.3 Maternal Health Issues in Developing Countries ................................................................ 6 1.4 Maternal Morbidity/Complications .................................................................................... 8 1.5 Obstetric Fistula a Public Health Problem ........................................................................ 12 1.5.0 What is Obstetric Fistula? .......................................................................................... 12 1.5.1 Demographic Characteristics of Women with Obstetric Fistula ................................ 13 1.5.2 Causes of Obstetric Fistula in Developing Countries ................................................. 14 1.5.3 Consequences of Obstetric Fistula ............................................................................. 18 1.5.4 Classification of Fistula ............................................................................................... 19 1.5.5 Epidemiology of Obstetric Fistula .............................................................................. 20 1.5.6 Role of Health System in Obstetric Fistula Development .......................................... 21 1.5.7 Prevention of Obstetric Fistula .................................................................................. 24 1.5.8 Treatment of Obstetric Fistula ................................................................................... 29 1.5.9 Social Reintegration of Treated Women .................................................................... 33 1.6 Study Setting- Nigeria ....................................................................................................... 36 v 1.6.0 Country Brief; History, Geography and Economy ...................................................... 36 1.6.1 Maternal Health and Development ........................................................................... 38 1.7 Obstetric Fistula in Nigeria ................................................................................................ 43 1.7.0 Prevalence and Incidence of Fistula ........................................................................... 43 1.7.1 Risk Factors for Obstetric Fistula Development in Nigeria ........................................ 44 1.7.2 Treatment and Prevention Programs in Nigeria ........................................................ 47 1.7.3 Rehabilitation and Reintegration Program ................................................................ 50 1.7.4 Community Participation and Social Reintegration ................................................... 52 1.8 Conclusion of Chapter ................................................................................................. 53 CHAPTER TWO ............................................................................................................................ 55 LITERATURE REVIEW