Sensory Integration Difficulties and Dysfunctions in Children with Fetal Alcohol Spectrum Disorders by Maritha du Plooy B Occupational Therapy (US) Dissertation submitted in fulfilment of the requirements in respect of a Master’s Degree M. Occupational Therapy in the DEPARTMENT: OCCUPATIONAL THERAPY FACULTY: HEALTH SCIENCES UNIVERSITY OF THE FREE STATE JUNE 2017 Study leader: Biostatistician: Mrs A van Jaarsveld Dr J Raubenheimer Co-study leader: Mrs E Janse van Rensburg Sensory Integration Difficulties and Dysfunctions in Children with Fetal Alcohol Spectrum Disorders (FASD). RESEARCHERS Student: Mrs Maritha du Plooy - 2012155566 Study Leader: Mrs Annamarie van Jaarsveld Co-study Leader: Mrs Elize Janse van Rensburg Biostatistician: Dr Jacques Raubenheimer i In the words of Eloise McGraw…. “To all children who have ever felt different” ii DECLARATION I, ………………………… ………., declare that the Master’s Degree research dissertation entitled Sensory Integration Difficulties and Dysfunctions in Children with Fetal Alcohol Spectrum Disorders that I herewith submit for the Master’s Degree qualification Magister in Occupational Therapy at the University of the Free State, is my independent work, and that I have not previously submitted it for a qualification at another institution of higher education ………………………………….. Maritha du Plooy iii "I continue to believe that if children are given the necessary tools to succeed, they will succeed beyond their wildest dreams!" David Vitter, U.S. Senator iv ACKNOWLEDGEMENTS I hereby acknowledge the following people for their support and assistance in the completion of this dissertation. • Every parent who was willing to participate in the study and allowed me to assess their child. • Every child who enthusiastically participated. Each of you is very special. • Every educator for their cooperation and time. • My supervisor, Annamarie van Jaarsveld, for guiding me with expertise and endless patience. Thank you for your belief in this study. • My co-supervisor, Elize Janse van Rensburg, for setting the academic bar high. You continuously inspired me to do better. • My statistician, Dr Jacques Raubenheimer, for making sense from the raw data and for assuring me that I needn’t know everything! • My friend Pieter, for your huge contribution in capturing the data. • Heather, for being my right hand throughout the months of testing. Thank you for motivating and encouraging me and for your kind, gentle way with each child. • My husband Jaco, for always allowing me to spread my professional wings. • My children, Elri, Petrie and Adoré, for assuring me that this was possible when I started doubting myself. • My mother Engela, for teaching me by example what empathy looks like. • SAISI and the University of the Free State - SAISI for their financial contribution and the University of the Free State for a master’s scholarship, one of those awarded since 2016 – making this study more affordable. • My heavenly Father, for giving me a love of children and the opportunity to be in a profession where I can make a difference in other’s lives. • John Kench, for your superb language editing of the thesis. • Matty, Molly, Asha, Lexie, Raph, Muffin and Jesse, for your quiet, loyal support and presence, either by my feet or on the keyboard blocking my view! v TABLE OF CONTENTS Page DEDICATED TO ii DECLARATION iii ACKNOWLEDGEMENTS v TABLE OF CONTENTS vi LIST OF TABLES x LIST OF FIGURES xi ACRONYMS AND ABBREVIATIONS xii CONCEPT CLARIFICATION xiii SUMMARY AND KEY WORDS xvi CHAPTER 1 – INTRODUCTION AND ORIENTATION TO RESEARCH 1 1.1 INTRODUCTION 1 1.2 PROBLEM STATEMENT 5 1.3 PURPOSE OF THE STUDY 6 1.3.1 Aim 6 1.3.2 Objective 6 1.4 DELIMITATIONS 7 1.5 METHODOLOGY 7 1.6 THE IMPORTANCE AND VALUE OF THE STUDY 8 1.7 ETHICAL CONSIDERATIONS 9 1.8 OUTLINE OF CHAPTERS 9 1.9 SUMMARY 10 CHAPTER 2 – LITERATURE REVIEW 11 2.1 INTRODUCTION 11 2.2 OVERVIEW OF FETAL ALCOHOL SPECTRUM DISORDERS 11 2.2.1 History 11 2.2.2 Diagnosis of Fetal Alcohol Syndrome 12 2.2.3 Diagnostic process relevant to this study 17 2.2.4 Fetal Alcohol Spectrum Disorders in South Africa 20 2.2.5 The effects of alcohol on brain and behaviour 24 vi 2.3 AN OVERVIEW OF THE CHILD WITH FASD IN SA – SPECIFICALLY 40 IN THE CAPE WINELANDS EDUCATION DISTRICT IN THE WESTERN CAPE 2.4 FASD AND OCCUPATIONAL THERAPY 43 2.4.1 Occupational therapy scope of practice 43 2.4.2 Sensory integration 50 2.4.3 Sensory-motor development and sensory integration 67 in children with FASD 2.4.4 The value of using a sensory integration framework to 77 evaluate children with FASD 2.5 FASD AND EDUCATION 78 2.6 FASD INTERVENTIONS 83 2.6.1 Interventions during alcohol exposure 83 2.6.2 Interventions for individuals with FASD 84 2.7 CONCLUSION 91 CHAPTER 3 – RESEARCH APPROACH AND METHODOLOGY 93 3.1 INTRODUCTION 93 3.2 RESEARCH APPROACH AND STUDY DESIGN 93 3.2.1 Quantitative approach 93 3.2.2 Observational analytical design 94 3.3 RESEARCH POPULATION 94 3.4 SAMPLING 94 3.4.1 Inclusion criteria 95 3.4.2 Exclusion criteria 96 3.4.3 Sampling 97 3.4.4 Sample size 97 3.5 RESEARCH PROCEDURE 98 3.6 PILOT STUDY 100 3.7 MEASUREMENT 101 3.7.1 The measurement instruments 102 3.7.2 Data collection process 112 3.8 DATA ANALYSIS 115 3.9 METHODOLOGICAL AND MEASUREMENT ERRORS 116 vii 3.9.1 Measurement errors 116 3.9.2 Confounding variables 120 3.10 ETHICAL ASPECTS 120 3.11 SUMMARY 124 CHAPTER 4 – RESULTS 125 4.1 INTRODUCTION 125 4.2 DEMOGRAPHIC INFORMATION 126 4.3 DIAGNOSTIC INFORMATION 129 4.4 SENSORY PROFILES 130 4.4.1 Sensory Profile Caregiver Questionnaire 130 4.4.2 Sensory Profile School Companion 141 4.5 SIPT 145 4.5.1 SIPT Clinical observations results by group 145 4.5.2 SIPT subtests mean scores 146 4.5.3 SIPT subtests by group 148 4.5.4 SIPT patterns of dysfunction 150 4.6 CONCLUSIONS 152 CHAPTER 5 – DISCUSSION OF RESULTS 153 5.1 INTRODUCTION 153 5.2 DEMOGRAPHIC INFORMATION 153 5.2.1 Study participants’ demographic information 154 5.2.2 Family structure 154 5.2.3 Maternal information 155 5.3 DIAGNOSTIC INFORMATION 157 5.4 SENSORY PROFILES 157 5.4.1 Sensory Profile Caregiver Questionnaire 157 5.4.2 Sensory Profile School Companion 164 5.4.3 Results summary of sensory profiles 167 5.5 SIPT 171 5.5.1 Clinical observations 171 5.5.2 SIPT subtests 173 viii 5.6 PATTERNS OF SENSORY INTEGRATION DYSFUNCTION 189 5.6.1 General observations 190 5.6.2 Identified patterns in this study 190 5.7 SUMMARY 192 CHAPTER 6 - CONCLUSIONS AND RECOMMENDATIONS 193 6.1 INTRODUCTION 193 6.2 LIMITATIONS OF THE STUDY 193 6.3 CONCLUSIONS 196 6.4 RECOMMENDATIONS 199 6.5 CLOSURE 200 REFERENCES 201 APPENDICES 215 APPENDIX A: Letter of approval from Ethics Committee APPENDIX B: Study permission from Prof Seedat APPENDIX C: Permission to conduct research in public schools in the Western Cape APPENDIX D: Explanatory document and letter of consent to Director of the Cape Winelands Education District APPENDIX E (i): Explanatory document and letter of consent to parents/caregivers of children with FASD APPENDIX E (ii): Explanatory document and letter of consent to parents/caregivers of children in control group APPENDIX F (i): Explanatory document and letter of assent of participant APPENDIX F (ii): Explanatory document and letter of assent of participant (Control Group) APPENDIX G: Diagnostic guidelines for specific fetal alcohol spectrum disorders (FASD) according to the IOM, as clarified by Hoyme et al. (2005) APPENDIX H: Definition of Documented Prenatal Alcohol Exposure (as Applied to the diagnostic categories set forth in APPENDIX I) APPENDIX I: Updated criteria for the diagnosis of FASD ix
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