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Social Inclusion, Care and Belonging of Children with Spina Bifida: Perspectives from Uganda

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Social Inclusion, Care and Belonging of Children with Spina Bifida: Perspectives from Uganda Social inclusion, care and belonging of children with spina bifida: perspectives from Uganda Femke Bannink Promotor: Prof. dr. Geert van Hove Co-promotor: Prof. dr. Richard Idro Proefschrift ingediend tot het behalen van de academische graad van Doctor in de Pedagogische Wetenschappen 2016 Dutch title: Sociale inclusie, zorg, betrokken- en geborgenheid van kinderen met spina bifida: perspectieven uit Oeganda Supervisory committee: Prof. dr. Geert van Hove Dr. Richard Idro Prof. dr. Johnny Fontaine Prof. dr. Maria de Bie Prof. dr. Koenraad Stroeken Prof. dr. Rudy van Coster To all the children with spina bifida who participated in this study iii Foreword In May 2007 my employer (AVSI) introduced me to Pierre Mertens, president of the International Federation of Spina Bifida and Hydrocephalus (IF) at the time, who asked me to attend a session at the International Spina Bifida and Hydrocephalus Conference in Kampala, Uganda. I had met children with spina bifida and hydrocephalus in northern Uganda, where AVSI had set up a referral system for children requiring neurosurgery from the Gulu orthopaedic workshop and rehabilitation centre to CURE hospital in Mbale. A partnership between AVSI, my employer, and IF then started, and AVSI hosted the IF Uganda office. I was asked to supervise the staff in the IF Uganda office and implementation of the program in Uganda. My meetings with children with disabilities and their familiesspurred my interest in carrying out research and furthering my professional developmentas a psychologist, anthropologist, and development program advisor. With the help of colleagues and friends I explored the possibilities of pursuing a PhD in disability studies whilst living and working in Uganda. This thesis is the results of a 6 year journey, in which I learned a lot about research, academic writing, politics, belonging, resilience and hope. I met, spoke, and played with children and families who often struggled economically, and socially. Some were surprised I wanted to speak to them. Through my work and research, there were a few children I met regularly. Ruth was one of them. She was born with spina bifida and developed hydrocephalus shortly after birth. Her father left her mother after she had given birth to her. Ruth, her mother, and aunt live in a room of 3x4 meters in a slum area of Kampala and have a monthly household income of less than a hundred euros. Ruth’s mother is a teacher; every day she carries Ruth on her back to school. Ruth enjoys school, and she loves singing. The traditional greeting of welcome in Ruth’s home and many others I have entered in the central region in the past few years is ‘karibu, nsanyuse okubalaba’. There are similar greetings in the languages of the other regions, and all mean: ‘Welcome, I am happy to see you.’ When leaving one does not say goodbye, but says ‘nkomawo’: I am coming back. Uganda’s languages and context show how we are because of others, and how interdependency can give us a different sense of belonging, not related to autonomy and rights but through being part of and practising humanity. iv Acknowledgements My gratitude goes to my promotor Prof. dr. Geert van Hove for his encouragement, enthusiasm, and guidance over the past six years. I am truly grateful to Dr Richard Idro for his academic support as a co-promotor and his expertise as a colleague in our work with children with disabilities in Uganda. I would like to thank the members of my guidance committee, Prof. dr. Johnny Fontaine, Prof. dr. Maria de Bie, Prof. dr. Koenraad Stroeken, and Prof. dr. Rudy de Coster, for their continuous support over the years. I am grateful for their flexibility and understanding of my irregular presence in Ghent. A special thank you to Johnny for his guidance and support in the statistical analyses. I thank Prof. dr. Ilse Derluyn for introducing me to Geert and supporting and encouraging me throughout my doctorate. Without the inspiring story of Pierre and Mol Mertens I would not have started this journey. I thank them and Lieven Bauwens and his family for their support, hospitality and encouragement. I am indebted to the International Federation for Spina Bifida and Hydrocephalus, and Child-Help for their financial support to this study. This study would not have been possible without the support I received from the staff of AVSI Foundation, Cure Children’s Hospital Uganda, Gulu Regional Referral Hospital, Katalemwa Cheshire Home, Lira Government Hospital, Mukisa Foundation, and Our Useful Rehabilitation Services. My special thanks go to Olivia Nakato, Rebecca Nakitto, Beatrice Lule of the IF Child-Help Uganda office; Joyce Laker, Rita Larok, Dr Francis Obita, Fred Opok, Dr Lawrence Ojom, Peter Galibwa, John Makoha, Davide Naggi and Dr Filippo Ciantia from AVSI Foundation; Kordelia Fischer and Ambrose Ganshanga from Our Useful Rehabilitation Services; Rebecca Muduwa, Moses Makhalu, Brian Nsubuga Kaaya, Derek Johnson and Dr John Mugamba, from CURE children’s hospital Uganda; Olive Nabiryo from Katalemwa Cheshire Home; and Florence Namaganda from Mukisa Foundation. I would like to thank my friends for standing by me over these years, in particular Prof. dr. Alison Elliott for encouraging me to pursue a PhD program, supporting me through this journey, and linking me to key people in the Ugandan research setting, including my co-promotor Richard. To Fiona Davies for listening, offering my children a second home, and the English proofreads. To Marieke Janssen and Monica Imi for their friendship. To Agnes, Rita, and other choir members for your support and the music. To my friends in Europe: Annemarie, Carolyn, Frank, Godfrey, Jacobien, Karin, Lisette, Marlies; with special mention to Wolter van der Vlist for his encouragement and Dutch summary proofread, and Ingmar Pfähler for her friendship and critical questions. I thank my Ugandan family for their support over the years: the late Absolom Sengendo, Margaret Nalongo Namuddu, Paul and Esther Nteza, Edward and Laetitia Wamala, Unior and Saad Katemba, Martin Lubwama, and all others for making me belong. Acknowledgements v I am grateful to my Dutch family members who have been supportive of my work and life in Uganda. With special mention to my cousins from Zeeland; my aunts Corine and Lenie who inspired me through their work; Jobjan for your visit to Uganda; Natalja for your encouragement. To my late cousin Lendo, for inspiring me to travel and visit Africa. I thank my beloved parents Wim and Ada Bannink for giving me the opportunity to grow and learn in freedom, love and faith, and supporting me in all the choices I made (and dad for the photo edits and mom for the Dutch language edits for my presentations). I thank my sister Janneke for her consistently positive outlook and encouragement and love. My dear husband James, thank you for your love, patience, and support. Our beautiful children, Elisa and Matthias, thank you for coping with me studying in the evenings and weekends, and giving us abundant joy and love. Table of Contents Foreword .......................................................................................................................... iii Acknowledgements .......................................................................................................... iv Chapter 1: Introduction ..................................................................................................... 1 1.1 African Childhood Disability Studies ........................................................................... 2 1.2 Spina bifida ................................................................................................................. 4 1.3 Study setting ............................................................................................................... 6 1.4 Study Questions ........................................................................................................ 10 1.5 Methods .................................................................................................................... 11 Chapter 2: Knowledge, Attitudes, and Practices ............................................................... 22 2.1 Community Knowledge, Beliefs, Attitudes, and Practices Towards Children with Spina Bifida and Hydrocephalus in Uganda .................................................................................. 23 Chapter 3: Health and Rehabilitative Services .................................................................. 41 3.1 Prevention of spina bifida: folic acid intake during pregnancy in northern Uganda ..... 42 3.2 Interdisciplinary care for children with spina bifida in East and Southern Africa .......... 53 Chapter 4: Social inclusion and belonging ........................................................................ 68 4.1 ‘I like to play with my friends’: children with spina bifida and belonging in Uganda .... 69 4.2 Cognitive abilities of pre-primary and primary school children with spina bifida in Uganda ................................................................................................................................. 94 4.3 Teacher’s and parent’s perspectives on inclusive education for children with spina bifida in Uganda ................................................................................................................. 116 Chapter 5: Family relationships and care ....................................................................... 131 5.1 Parental stress and support of parents of children with spina bifida in Uganda
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