Sharing the Burden: Ugandan Women Speak About Obstetric Fistula Women’s Dignity Project and EngenderHealth November 2007 Sharing the Burden : Ugandan Women Speak About Obstetric Fistula © Women’s Dignity Project, Tanzania, and EngenderHealth, USA, 2007 All rights reserved. This publication may be reproduced without fee or prior permission for educational and informational purposes, providing acknowledgement of the source is recognized in terms of citation. Recommended citation: Women’s Dignity Project and EngenderHealth, Sharing the Burden: Ugandan Women Speak About Obstetric Fistula , Dar es Salaam, Tanzania, 2007 For further information contact: Women’s Dignity Project EngenderHealth PO Box 79402 440 Ninth Avenue Dar es Salaam, Tanzania New York, NY 10001 USA Tel: +255 22 2152577 Tel: +1 212 561 8000 Fax: +255 22 2152986 Fax: +1 212 561 8067 Email: [email protected] Email: [email protected] Website: www.womensdignity.org Website: www.engenderhealth.org ii Acknowledgments Women’s Dignity Project and EngenderHealth would like to thank the women, families, community members, and healthcare providers who gave generously of their time to make this research study possible. This study was a collaborative effort of a number of institutions, including the Women’s Dignity Project and EngenderHealth, together with partners in Uganda: the Association for the Reorientation and Rehabilitation of TESO Women for Development (TERREWODE), Good Hope Foundation for Rural Development (GHFRD), and Kitovu Mission Hospital. We thank the many staff members of those institutions who helped to develop and implement this study: Maggie Bangser, Catherine Kamugumya and Atuswege Mwangomale of Women’s Dignity Project; Manisha Mehta, Rachel Goldberg, Mary Nell Wegner and Karen Beattie of EngenderHealth; Alice Emasu and Janeth Apugo of TERREWODE; Kabanda Obed and Louise Nakabugo of GHFRD; and Annet Nangonzi and Adah Nkolenta Ojur from Kitovu Mission Hospital. The research team would also like to thank the Director of Health Services at Kitovu Mission Hospital, Regis Nansubunga, and the nurse midwives of Kitovu; Dr Fred Kirya at Soroti Hospital; and officials of the Ministry of Health in Uganda for their support and collaboration throughout the study. We would like to acknowledge Nicole Barber, Mevi Gray, Malika Gujrati, and John Lindsay of The New School for their able support and assistance with data management and analysis; and the technical input provided by Janet Singer of Women and Infants’ Hospital. This report was written by Manisha Mehta, Maggie Bangser, Nicole Barber, John Lindsay, and Malika Gujrati. Dr Henry Kakande and Julie Wiltshire from EngenderHealth’s Uganda office reviewed and provided comments on the report. The report was edited by Chris Daly. iii Table of Contents Acknowledgements....................................................................................................................iii List of Abbreviations................................................................................................................. vi Executive Summary ................................................................................................................. vii I. Introduction ...................................................................................................................... 1 II. Study Design and Methodology....................................................................................... 3 A. Study Locations ........................................................................................................ 3 B. Study Partners........................................................................................................... 3 C. Study Instruments ..................................................................................................... 3 D. Study Participants ..................................................................................................... 5 E. Fistula Treatment ...................................................................................................... 7 F. Data Collection ......................................................................................................... 7 G. Approvals for the Study............................................................................................ 7 III. Analysis and Reporting of the Findings.......................................................................... 8 A. Data Analysis and Presentation ................................................................................ 8 B. Community Feedback Meetings ............................................................................... 8 C. District Feedback Meetings ...................................................................................... 9 IV. Study Limitations ............................................................................................................. 9 A. Length of Time Living with Fistula.......................................................................... 9 B. Timing of Labor........................................................................................................ 9 C. Recording of Interviews............................................................................................ 9 D. Lack of Research Experience.................................................................................... 9 V. Study Findings ................................................................................................................ 10 A. Age and Gravidity of Women with Fistula............................................................. 10 B. Pregnancy History................................................................................................... 11 C. Birth Preparation..................................................................................................... 14 D. Labor and Delivery ................................................................................................. 16 E. Perceptions of Causes of Fistula............................................................................. 24 F. Impact of Fistula on Women................................................................................... 28 G. Impact of Fistula on Families ................................................................................. 34 H. Coping with Fistula................................................................................................. 36 I. Fistula Repair.......................................................................................................... 39 VI. Recommendations of Study Participants...................................................................... 43 A. Preventing Fistula ................................................................................................... 43 B. Management and Treatment of Fistula ................................................................... 43 VII. Key Findings and Recommendations............................................................................ 44 VIII. Conclusion....................................................................................................................... 49 References ................................................................................................................................. 50 Annexes...................................................................................................................................... 52 Annex 1. Total Number of Participants by Research Activity and District ............................... 52 Annex 2. Ministry of Health, Uganda: Goal Oriented Antenatal Care Protocol........................ 53 Annex 3. Delivery Trajectory from Initiation of Labor to Final Delivery ................................. 54 Annex 4. Participants’ Recommendations for Preventing Fistula.............................................. 55 Annex 5. Women’s Recommendations for Managing Fistula ................................................... 58 iv List of Tables Table 1: Overall Purpose and Issues Explored for Each Study Instrument ............................ 4 Table 2: Descriptive Indicators............................................................................................... 8 Table 3: Number of Moves from Initiation of Labor to Final Delivery................................ 17 Table 4: Number of Delays Experienced by Women in Reaching and Receiving Emergency Care...................................................................................................... 18 Table 5: Type of Delays Experienced by Women with Fistula ............................................ 18 Table 6: Women’s Perceptions of the Causes of Fistula....................................................... 25 Table 7: Family Members’ Perceptions of the Causes of Fistula ......................................... 25 Table 8: Community Members’ Perceptions of the Causes of Fistula.................................. 26 Table 9: Impact of Fistula on Marital Status......................................................................... 30 Table 10: Impact of Fistula on Women’s Capacity to Work .................................................. 33 Table 11: Women’s Treatment History................................................................................... 40 Table 12: Number of Times Women Sought Treatment/Repair............................................. 40 Table 13: Reasons for Not Seeking Repair............................................................................