The United Republic of Tanzania The 2019 Baseline Survey on Socio-Economic Status of Persons with Albinism and Their Households in The Lake Zone Tanzania Albinism Society (TAS) and Karagwe Community Based Rehabilitation Programmes (KCBRP) December 2019 Table of Contents List of Tables ............................................................................................................... v List of Figures ............................................................................................................ xii List of Plates ........................................................................................................... xvi Abbreviations and Acronyms ................................................................................... xvii Acknowledgement ................................................................................................... xviii Executive Summary ................................................................................................... xix CHAPTER ONE: INTRODUCTION ........................................................................ 1 1.1 Background .............................................................................................................. 1 1.2 Objective of the Survey ........................................................................................... 4 1.3 Survey Organization ................................................................................................ 5 1.3.1 Survey Design ....................................................................................................... 5 1.3.2 Study Population ................................................................................................... 6 1.3.3 Sampling Design ................................................................................................... 6 1.3.4 Sample Implementation ........................................................................................ 7 1.4 Geographical Distribution of Surveyed Areas ......................................................... 7 1.5 Training of Field Staff ............................................................................................. 7 1.6 Fieldwork ............................................................................................................... 8 1.7 Data Processing ........................................................................................................ 8 1.8 Limitation of the Survey .......................................................................................... 9 CHAPTER TWO: POPULATION CHARACTERISTICS OF SURVEYED HOUSEHOLDS .............................................................. 10 2.0 Introduction ............................................................................................................ 10 2.1 Age and Sex Structure ........................................................................................... 10 i 2.2 Population Distribution of Special Age Groups .................................................... 12 2.2.1 Young Population (0-14 years) by Council ........................................................ 12 2.2.2 Youth Population by Council – International Definition (15-24 years) ............. 14 2.2.3 Youth Population by Council – National Definition (15-35 years) ................... 16 2.2.4 Women of Reproductive Age (15-49 years) ....................................................... 18 2.2.5 Working Age Population (15-64 years) .............................................................. 20 2.2.6 Elderly Population (60 years or above) .............................................................. 22 2.3 Marital Status ......................................................................................................... 26 2.4 Literacy and Education .......................................................................................... 32 2.4.1 Literacy ............................................................................................................. 32 2.4.1.1 Literacy Status in Surveyed Population ........................................................... 33 2.4.2 Adult Literacy in Surveyed Population .............................................................. 34 2.4.2 Education ............................................................................................................ 35 2.4.2.1 Education Attainment ...................................................................................... 36 2.5 Prevalence of Persons with Albinism .................................................................... 37 2.6 Birth Certificate ...................................................................................................... 48 2.7 Entrepreneurship, Credits and Personal Assistance ............................................... 51 CHAPTER THREE: HOUSING CHARACTERISTICS ...................................... 67 3.1 Introduction ............................................................................................................ 67 3.2 Ownership Status of the Main Household Building .............................................. 67 3.3 Legal Right of Ownership of Land where Main Household Building is Located .................................................................................................... 68 3.4 Main Roofing Building Materials .......................................................................... 70 3.5 Main Flooring Materials ........................................................................................ 71 3.6 Building Materials for Walls ................................................................................. 72 ii 3.7 Main Source of Drinking Water ............................................................................ 73 3.8 Main Source of Energy for Cooking ...................................................................... 76 3.9 Main Source of Energy for Lighting ...................................................................... 77 3.10 Toilet Facility ....................................................................................................... 79 3.11 Number of Rooms for Sleeping ........................................................................... 82 3.12 Household Wealth Index ...................................................................................... 84 CHAPTER FOUR: PERSONS WITH ALBINISM ............................................... 93 4.1 Introduction ............................................................................................................ 93 4.2 Age and Sex Distribution ....................................................................................... 93 4.3 Location ............................................................................................................. 94 4.4 Marital Status ......................................................................................................... 95 4.5 Education ............................................................................................................. 98 4.5.1 Current Education Status .................................................................................... 98 4.5.2 Education Attained by Persons with Albinism ................................................. 100 4.5.3 Literacy Rate ..................................................................................................... 102 4.5.4 Reasons for Partially or Never Attended School .............................................. 103 4.6 Employment Status .............................................................................................. 110 4.7 Reasons for Not Being Employed........................................................................ 116 4.8 Sense of Security .................................................................................................. 120 4.9 Use of Assistive Devices ..................................................................................... 123 4.10 Reasons for Not Using Assistive Devices ......................................................... 127 4.11 Healthcare Services for Persons with Albinism ................................................ 129 4.12 Use of Sunscreen Lotions .................................................................................. 138 4.13 Access to Sunscreen Lotions ............................................................................. 140 4.13 Reasons for Not Using Sunscreen Lotions ........................................................ 145 iii 4.14 Violence ........................................................................................................... 146 4.15 Awareness of the Police Gender and Children’s Desk ...................................... 158 CHAPTER FIVE: CONCLUSION AND RECOMMENDATIONS .................. 161 5.1 Introduction .......................................................................................................... 161 5.2 Summary of Findings and Conclusion ................................................................. 161 5.2.1 Demographic Characteristics ............................................................................ 161 5.2.2 Birth Certificates ............................................................................................... 163 5.2.3 Entrepreneurship, Credits and Personal Assistance .......................................... 163 5.2.4 Household Wealth ............................................................................................