WOMEN-LED TSETSE CONTROL: A PILOT STUDY IN NORTHWEST UGANDA Thesis submitted in accordance with the requirements of the University of Liverpool for the degree of Doctor in Philosophy by Vanja Kovačič. December, 2015 DEDICATION This piece of work is dedicated to two people, who greatly influenced me with their values of integrity and profound understanding of freedom. I was lucky enough to be born into your company. To Jožica and Stane Kovačič I ACKNOWLEDGEMENTS ‘Ba alu pamvu siri (a) ru. “The footprint (track) of only one person is narrow1”. (Lugbara proverb, Uganda) In the past couple of years there were many people who inspired me, encouraged me, made me think and dream and grow; in short, who made me who I am now. So my sense of gratitude is not limited to the people I mention here. First I am extremely grateful to my supervisors, Dr. Helen Smith, Prof. Steve Torr: Your support, openness to my ideas, patience and friendship has been invaluable. It has been a long journey… I would like to thank to Dr. Alex Shaw: Your guidance and support in the development of protocols and costing analysis was immensely useful. To Dr. Hannah Betts: Thank you for your advice and assistance in the analysis of the tracking data and help with the production of maps. I would like to offer my special thanks to Prof. Mike Lehane. You were always ready to give me a fatherly advice. A big thanks to my field staff who worked alongside me: Alia Warida, Grace Bethel Alimani, Nixon Omviti, Henry Obanya, Irene Ajomeya, Jeremiah Onzika, Angelo Amguyo, and John Adiamdu: for your incredible collaboration, invaluable contributions in facilitating data collection, for the optimism, energy and laughter. It was a great pleasure to work with you all. To all the participants, for all your inspiration, sharing your stories, enthusiasm and trust and for welcoming me like I belonged to you. You have not only shaped my research, you also shaped me. Thank you, to my colleagues and friends, Inaki Tirados, Clement Mangwiro, Johan Esterhuizen for many special moments and interesting debates on our veranda in Arua. My time in Uganda would not have been the same without you. To my MSF neighbours in Arua, for all the fun movie nights, shared meals, ‘chatty runs’, dance hours, and the light you brought to our house anytime you came to visit. 1 “EXPLANATION: Unlike a single track, many travellers create a wide path. This Lugbara proverb refers to the fact that someone working on his own does not achieve as much as those who work together to achieve success.” (In: Steward D. (2005) Wisdom from Africa, A collection of proverbs. Struik Publishers, South Africa) II To Paul Garner, for opening the doors of your home when I returned from the field, to Liverpool, in my usual, exhausted state; and for making the most delicious meals. But mostly for your incredible friendship and consistent support. To my ‘scouse family’: Lirije Hyseni, Emma Kinghan and Katharine Hopping, for being my second family. To my dear friend, Sheila Ramaswamy, for all the beautiful editing, but mostly for being such a loyal friend, and being there for me, always. Distance never seems to exist between us and you always amaze me with your wonderful sense of humour and strength. Thank you, to my ‘library support and wellbeing team’: Sulaiman Sadi Ibrahim and Austin Johnson for many coffees delivered, and for smiles that arrived just at the moments when I needed them most. To Chiara Lepora and Ana Alvarez Mingote for sharing your wisdom. I am grateful to Darja and Matej Kovačič for keeping me feel rooted. And to Juta and Jakob Kovačič, for forgiving me for my absence, receiving me with the sweetest hugs and for all the beautiful drawings you gave me to remind me of the home anytime I was away. To all the Klemen’s clan for the consistent reminder where I come from and where I can always return to. And to all those who left, without me being able to say goodbye… To all of you, amazing people, my biggest thank you. I feel lucky that our paths have crossed. III ABSTRACT Women-led tsetse control: a pilot study in North West Uganda Vanja Kovačič INTRODUCTION Human African Trypanosomiasis (HAT) is a disease caused by infection with trypanosomes and transmitted by tsetse flies, which continues to threaten thousands of people in Africa. Tiny targets –small pieces of cloth impregnated with insecticide– are a new, cheap, and effective entomological tool to prevent transmission. The most sustainable and effective way to implement these targets remains uncertain, but their simplicity makes them an excellent candidate for community led schemes. The aim of this research was to design, implement, and evaluate a women-led tsetse control intervention using tiny targets in an area endemic to HAT. METHODS The research was conducted in North West Uganda and organized in three distinct phases: 1) The baseline phase used in-depth interviews, GPS human tracking, seasonal calendars and participatory mapping to explore the factors influencing community participation; 2) The intervention and evaluation phase piloted a women-led tsetse control operation in three villages and evaluated its impact using action research; 3) The stakeholders’ reflections phase explored the community and decision-makers’ perceptions of community involvement in future HAT control interventions, through community role play and in-depth interviews with decision-makers. RESULTS During the baseline phase, the community did not express negative perceptions towards HAT control programmes, although they recalled past experiences with different programmes imposed upon them. Both men and women perceived women to be at greater risk of tsetse bites then men because of their daily activities in close proximity to rivers, and this was an important facilitator for their involvement. However, the GPS human tracking study suggested that the actual risk was similar among men and women. During the six month pilot intervention, women were highly motivated, and their ownership of the programme and sense of empowerment increased. Participants perceived the intervention as feasible. The evaluation demonstrated that more tiny targets were functional at six months post deployment in the pilot villages than in an expert-led programme in an adjacent area, due to community maintenance of the targets. The pilot community-led intervention was also more cost-effective. IV Through role-play in the stakeholders’ reflection phase, women demonstrated with confidence their ability to define priorities, good negotiation skills, and critical insights into decision-making. During in- depth interviews, decision- makers acknowledged that the community has an important role in HAT elimination, but that they lacked knowledge and skills in community based approaches. Women are not well represented in HAT control policy and planning, and the perception of tsetse control as a male domain was an additional barrier to women-participation approaches. CONCLUSIONS This study demonstrated that a community-based tsetse control programme organized and led by women was feasible and cost-effective. The high-level of engagement and motivation of these women and their effective management of the tiny targets provide evidence that community-based approaches may be a sustainable option for tsetse control. However, this will need widespread engagement of policy and programme staff and recognition that communities are equal partners in HAT elimination. V ACRONYMS AIDS Acquired Immune Deficiency Syndrome AR Action Research AU African Union CAR Central African Republic COCTU Coordinating Office for Control of Trypanosomiasis in Uganda DALY Disability-adjusted Life Year DFID Department for International Development DRC Democratic Republic of Congo EU European Union FAO Food and Agriculture Organization FGD Focus Group Discussion GLM General Linear Model GPS Global Positioning System HAT Human African trypanosomiasis HIV Human immunodeficiency virus IAEA International Atomic Energy Authority ICIPE International Centre on Insect Physiology and Ecology IMC International Medical Corps LSTM Liverpool School of Tropical Medicine MOH Ministry of Health MSF Médecins sans Frontières NGO Non-Governmental Organization NTD Neglected Tropical Disease PAR Participatory action research UGX Uganda Shilling UN United Nations UNICEF United Nations International Children's Emergency Fund UNCST Uganda National Council of Science and Technology USD United States dollar VHT Village Health Team WHO World Health Organization VI TABLE OF CONTENTS DEDICATION ............................................................................................................................................... I ACKNOWLEDGEMENTS ............................................................................................................................. II ABSTRACT ................................................................................................................................................ IV ACRONYMS .............................................................................................................................................. VI TABLE OF CONTENTS .............................................................................................................................. VII LIST OF FIGURES ........................................................................................................................................X LIST OF TABLES .........................................................................................................................................XI