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Barriers and Enablers to Childhood Cataract Services in India

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Barriers and Enablers to Childhood Cataract Services in India City Research Online City, University of London Institutional Repository Citation: Sethu, S. (2018). Barriers and enablers to childhood cataract services in India. (Unpublished Doctoral thesis, City, University of London) This is the accepted version of the paper. This version of the publication may differ from the final published version. Permanent repository link: https://openaccess.city.ac.uk/id/eprint/20553/ Link to published version: Copyright: City Research Online aims to make research outputs of City, University of London available to a wider audience. Copyright and Moral Rights remain with the author(s) and/or copyright holders. URLs from City Research Online may be freely distributed and linked to. Reuse: Copies of full items can be used for personal research or study, educational, or not-for-profit purposes without prior permission or charge. 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City Research Online: http://openaccess.city.ac.uk/ [email protected] Barriers and enablers to childhood cataract services in India Sheeladevi Sethu Thesis submitted for the degree of PhD City, University of London School of Health Sciences 2018 1 2 Contents ACKNOWLEDGEMENTS .................................................................................................................. 12 DECLARATION ................................................................................................................................ 13 ABSTRACT ...................................................................................................................................... 14 CHAPTER 1 ..................................................................................................................................... 15 1 INTRODUCTION AND RESEARCH OVERVIEW ......................................................................... 15 EPIDEMIOLOGY OF CHILDHOOD BLINDNESS ...................................................................................... 15 CAUSES OF BLINDNESS IN CHILDREN ................................................................................................ 17 AVOIDABLE CAUSES OF BLINDNESS IN CHILDREN ................................................................................ 18 CHILDHOOD CATARACT ................................................................................................................ 19 1.4.1 Anatomy of the lens ................................................................................................. 20 1.4.2 Morphology ............................................................................................................. 21 1.4.3 Visual development in childhood ............................................................................. 23 1.4.4 Causes of cataract in children .................................................................................. 25 CATARACT SURGERY IN CHILDREN ................................................................................................... 26 1.5.1 Importance of postoperative follow up ................................................................... 29 1.5.2 Importance of early treatment ................................................................................ 31 DELAYED PRESENTATION FOR CHILDHOOD CATARACT SURGERY ............................................................. 33 BARRIERS TO ACCESS CHILDHOOD CATARACT SERVICES ........................................................................ 34 STUDIES FROM INDIA ON CHILDHOOD CATARACT ............................................................................... 35 1.8.1 Report from schools for the blind ............................................................................ 35 1.8.2 Population based studies ......................................................................................... 36 STRUCTURE OF THIS THESIS ........................................................................................................... 37 CHAPTER 2 ..................................................................................................................................... 40 2 METHODOLOGY .................................................................................................................... 40 RATIONALE FOR ADOPTING MIXED METHODS .................................................................................... 40 RESEARCH STRATEGY ................................................................................................................... 41 MIXED METHODOLOGIES IN PUBLIC HEALTH RESEARCH ....................................................................... 43 MIXED METHODS IN THE CONTEXT OF THE PRESENT RESEARCH ............................................................. 43 QUANTITATIVE METHODS ............................................................................................................. 46 2.5.1 Pilot study ................................................................................................................ 48 3 2.5.2 Validity and reliability .............................................................................................. 49 2.5.3 Sample size ............................................................................................................... 50 QUALITATIVE METHODS ................................................................................................................ 52 2.6.1 In-depth interviews .................................................................................................. 52 2.6.2 Focus group discussion with the primary eye care providers ................................... 54 STUDY ENROLMENT PROCESS ......................................................................................................... 57 DATA COLLECTION PLAN................................................................................................................ 58 ETHICAL CONSIDERATIONS ............................................................................................................. 60 RESEARCH COLLABORATION ...................................................................................................... 61 STUDY LOCATIONS .................................................................................................................. 63 ANALYSIS PLAN....................................................................................................................... 67 INTRODUCING THE RESEARCH FIELD ............................................................................................ 68 2.13.1 Children in India ....................................................................................................... 69 2.13.2 Gender ratio ............................................................................................................. 69 2.13.3 Eye care infrastructure in India ................................................................................ 74 2.13.4 Paediatric eye care in India ...................................................................................... 76 CHAPTER 3 ..................................................................................................................................... 78 3 SYSTEMATIC REVIEW ON GLOBAL PREVALENCE OF CHILDHOOD CATARACT......................... 78 INTRODUCTION ........................................................................................................................... 78 OBJECTIVES ................................................................................................................................ 79 METHODS .................................................................................................................................. 79 3.3.1 Inclusion and Exclusion criteria ................................................................................ 80 3.3.2 Data Abstraction and Quality Assessment ............................................................... 80 3.3.3 Statistical methods ................................................................................................... 84 RESULTS .................................................................................................................................... 85 3.4.1 Study Characteristics and Methodological quality ................................................... 87 3.4.2 Quantitative data synthesis ..................................................................................... 99 3.4.3 Prevalence of childhood cataract regional wise ..................................................... 102 3.4.4 Prevalence of childhood cataract in India .............................................................. 103 3.4.5 Incidence of childhood cataract ............................................................................. 106 DISCUSSION .............................................................................................................................106 CONCLUSION ............................................................................................................................111 CHAPTER – 4 ................................................................................................................................ 112 4 4 AGE AT PRESENTATION FOR CHILDHOOD CATARACT SURGERY ACROSS INDIA ................... 112 SUMMARY .......................................................................................................................................
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