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Exploring the Impact of Having a Child with a Disability in Saudi Arabia

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Exploring the Impact of Having a Child with a Disability in Saudi Arabia THE UNIVERSITY OF HULL Exploring the Impact of having a Child with a Disability in Saudi Arabia: Implications for Family Support Services being a Thesis submitted in partial fulfilment of the requirements for the degree of Doctor of Philosophy in the University of Hull By Mashael Suliman Alariefy B.A in Childhood Studies, King Abdulaziz University, Saudi Arabia Master of Education, the University of Hull December, 2016 Acknowledgment I would like to express my sincere thanks and profound appreciation to my supervisor, Professor Kiki Messiou, for her true, sincere concern, constant support, valuable guidance, and most importantly kind encouragement, even when I lost confidence in my aptitude. My appreciation also goes to all of the mothers and fathers of children with disability who participated in my study and who offered me their time and effort. Their contribution was absolutely invaluable to the success of this study. A special warm tribute to my husband; his love, patience, sacrifices, and understanding made this study possible. I cannot find the words to express my apologies to my mother and father for the long busy days I have had and for spending to long away from them. Finally, I would like to offer my warmest thanks to all of my friends for their support and constant encouragement. Abstract This study explores the impact of having a child with a disability in Saudi Arabia, with a focus on the challenges involved and the implications for the development of relevant family support services. A qualitative approach was employed for the study, using individual interviews and focus groups, with a total of 42 parents, both fathers and mothers. A total of twenty individual semi-structured interviews were conducted in Riyadh, the capital of Saudi Arabia, in Jeddah, its second largest city and in two rural areas. Three focus groups were also held in each city, two of which comprised four mothers and the third three fathers. Data analysis suggests that having a child with disability often profoundly affects the perceptions of parents about disability, their feelings, and their way of life. In addition, many face particular challenges in relation to education, health care, regulations and the community. Finally, the study highlights that the current provision of services for people with disability and their families in Saudi Arabia is modest and that many parents lack awareness about the existing as well as potential services. Overall, the views of parents reflect the medical model of disability, which is also reflected in the position of Saudi Arabia as a whole, as illustrated by official policies. Religion and culture were found to be instrumental in shaping such attitudes and should therefore be factored into the design of related services. The study outcomes suggest that the development of a more inclusive approach for these children will require the perceptions of disability to change among parents and the wider society. Education on disability with regards to religious and cultural issues, supplemented by the provision of appropriate services through family support services centres, can enable the development of awareness and knowledge to better meet the rights and needs of children with disability and their families. Table of Contents ACKNOWLEDGMENT 2 ABSTRACT 3 CHAPTER 1: INTRODUCTION 11 1.1 INTRODUCTION 11 1.2 RESEARCH MOTIVATION 12 1.3 RESEARCH QUESTIONS 15 1.4 THESIS STRUCTURE 16 CHAPTER 2: LITERATURE REVIEW 19 2.1 INTRODUCTION 19 2.2 WHAT IS INCLUSIVE EDUCATION? 21 2.3 DISABILITY 23 2.3.1 DEFINITIONS OF DISABILITY 23 2.3.2 HISTORICAL BACKGROUND 27 2.3.3 DISABILITY MODELS 30 2.4 FAMILY 32 2.4.1 FAMILY MEANING 32 2.4.2 WHY FAMILY MATTERS 34 2.4.3 THE IMPACT OF A CHILD’S DISABILITY ON THE FAMILY 37 2.4.3.1 IMPACT ON THE FAMILY’S FUNCTIONS 38 2.4.3.2 ECO-CULTURAL MODIFICATIONS TO THE FAMILY’S ROUTINE 40 2.4.3.3 STRESS, DEPRESSION OR THE BURDEN OF PROVIDING CARE 42 2.4.4 PARENTS’ ATTITUDES 45 2.5 FAMILY SUPPORT 48 2.5.1 THE MEANING OF FAMILY SUPPORT 50 2.5.2 BACKGROUND OF FAMILY SUPPORT IN RELATION TO DISABILITY 53 4 2.5.3 THE RELATIONSHIP BETWEEN PARENTS AND FAMILY PROFESSIONALS 58 2.5.4 TYPES OF FAMILY SUPPORT SERVICES 60 2.5.4.1 FAMILY SUPPORT SERVICES ACCORDING TO THE PROVIDER OR THE LEADER 61 2.5.4.2 FAMILY SUPPORT SERVICES ACCORDING TO TYPE OF SERVICE 63 2.6 SUMMARY 65 CHAPTER 3: RESEARCH CONTEXT; SAUDI ARABIA 67 3.1 INTRODUCTION 67 3.2 SAUDI SOCIETY 67 3.3 EDUCATION 72 3.4 HEALTH 76 3.5 MAIN WELFARE RIGHTS FOR PEOPLE WITH DISABILITY 76 3.6 SUMMARY 78 CHAPTER 4: METHODOLOGICAL FRAMEWORK 79 4.1 INTRODUCTION 79 4.2 RESEARCH APPROACHES 81 4.3 RESEARCH PHILOSOPHY 82 4.4 QUALITATIVE RESEARCH AND THE ROLE OF THE RESEARCHER 84 4.4.1 QUALITATIVE RESEARCH 84 4.4.2 ROLE OF RESEARCHER 87 4.5 DATA COLLECTION METHODS 90 4.5.1 TYPES OF INTERVIEW 90 4.5.2 DATA COLLECTION PROCESS 95 4.5.3 INTERVIEWS 99 4.5.4 TIME AND LOCATION 101 4.6 PARTICIPANTS 103 4.6.1 NUMBER OF INTERVIEWS AND SIZE OF GROUPS 103 4.6.2 PARTICIPANTS SELECTION 104 5 4.7 ETHICAL ISSUES 110 4.7.1 INFORMED PARTICIPATION 112 4.8 TRUSTWORTHINESS 114 4.9 QUALITATIVE DATA ANALYSIS 117 4.9.1 PREPARING DATA FOR ANALYSIS 118 4.9.2 CODING, CREATING CATEGORIES AND DEVELOPING A MATRIX 118 4.9.3 GENERAL OBSERVATIONS 120 4.10 CHAPTER SUMMARY 120 FINDINGS 122 CHAPTER 5: THE IMPACT OF HAVING A CHILD WITH A DISABILITY ON FAMILY 122 5.1 INTRODUCTION 122 5.2 PARENTS’ PERCEPTIONS OF DISABILITY 123 5.2.1 THE USE OF LANGUAGE 123 5.2.2 PARENTS’ ATTITUDES 126 5.2.2.1 CURE AND ABORTION OF A DISABLED FOETUS 126 5.2.2.2 THE SHOCK OF HAVING A CHILD WITH A DISABILITY 129 5.2.2.3 PARENTS’ UNDERSTANDING OF THEIR CHILDREN’S ATTITUDE TOWARDS THEIR OWN DISABILITY 130 5.2.2.4 IMPACT OF SEEING OTHER CHILDREN WITH DISABILITY 132 5.2.2.5 NEGATIVITY IN CLAIMING RIGHTS 134 5.2.3 RELIGIOUS OUTLOOK 136 5.2.4 EXPLOITATION OF DISABILITY 138 5.2.4.1 BY PARENTS 139 5.2.4.2 BY MEDIA 141 5.2.4.3 BY HOSPITALS AND SCHOOLS 145 5.2.4.4 BY TRADITIONAL HEALERS AND SPIRITUALITY 146 5.3 PARENTS’ FEELINGS 147 6 5.3.1 UNCERTAINTY AND DESPAIR 147 5.3.2 ANGER AND FRUSTRATION 154 5.3.3 UNIMPORTANCE 157 5.3.4 EMOTIONAL STRESS 159 5.4 THE IMPACT OF HAVING A CHILD WITH A DISABILITY ON HIS/HER FAMILY’S WAY OF LIFE. 162 5.4.1 THE IMPACT OF HAVING THE CHILD ON PARENTS’ CAREER PATH 162 5.4.2 THE IMPACT OF HAVING THE CHILD ON THE LIFESTYLE OF THE FAMILY 164 5.4.3 THE IMPACT OF HAVING THE CHILD ON THE ROLE OF EACH PARENT 165 5.4.3.1 THE DIVISION OF ROLES BETWEEN MOTHERS AND FATHERS 165 5.4.3.2 WITHDRAWAL OF FATHERS 168 5.5 POSITIVE IMPACT OF A CHILD ON HIS/HER PARENTS: 171 5.6 SUMMARY 172 CHAPTER 6: CHALLENGES FACED BY PARENTS 175 6.1 INTRODUCTION 175 6.2 EDUCATION 175 6.2.1 FINDING SCHOOLS 176 6.2.2 EDUCATION COSTS 179 6.2.3 INTEGRATION OF CHILDREN INTO MAINSTREAM SCHOOLS 180 6.2.4 PARENTS’ LACK OF AWARENESS OF CHILDREN’S EDUCATION 184 6.3 HEALTH CARE 187 6.3.1 MEDICAL SUPPORT 188 6.3.2 PARENTS’ RELATIONSHIP WITH DOCTORS 190 6.4 REGULATIONS AND OFFICIALS 191 6.4.1 MINISTRY OF SOCIAL AFFAIRS 192 6.4.2 OFFICIALS AND THE SYSTEM 194 6.4.3 SUBSIDY 195 6.4.4 AID DEVICES 196 7 6.5 COMMUNITY 198 6.5.1 EXTENDED FAMILY 198 6.5.2 ABUSE AND PITY 200 6.5.3 TRANSPORTATION 201 6.6 SUMMARY 203 CHAPTER 7: PARENTS’ VIEWS OF FAMILY SUPPORT SERVICES 204 7.1 INTRODUCTION 204 7.2 PARENTS’ VIEWS REGARDING FAMILY SUPPORT SERVICES IN SAUDI ARABIA 205 7.3 PARENTS’ VIEWS REGARDING FAMILY SUPPORT SERVICES PROVIDED IN OTHER COUNTRIES 207 7.3.1 SUPPORT AND ADVICE 209 7.3.1.1 SUPPORT AND ADVICE BY SPECIALISTS 209 7.3.1.2 PARENT-TO-PARENT SUPPORT 212 7.3.1.3 PARENT SUPPORT GROUPS 216 7.3.2 EDUCATING PARENTS AND RAISING AWARENESS 220 7.3.2.1 THE CURRENT SITUATION 220 7.3.2.2 WHAT THE PARENTS WISH TO HAVE 223 7.3.3 PROVIDING RELIABLE INFORMATION 226 7.3.4 SERVICES AT HOME 228 7.3.5 ENTERTAINMENT 231 7.4 PARENTS’ SUGGESTIONS 232 7.4.1 AN ENTITY SPEAKING ON BEHALF OF THE DISABLED 232 7.4.2 ADVISORS AND MEDIATORS 233 7.4.3 TRANSPORTATION ALTERNATIVES 236 7.4.4 FINANCIAL SUPPORT 237 7.5 SUMMARY 237 CHAPTER 8: DISCUSSION 238 8 8.1 INTRODUCTION 238 8.2 PARENTS’ SUGGESTIONS AND PREFERENCES 240 8.2.1 PERSONAL AND SHORT TERM SUGGESTIONS 240 8.2.2 GENERAL AND LONG TERM SUGGESTIONS 242 8.3 THE BASES FOR PARENTS’ SUGGESTIONS 244 8.3.1 LACK OF AWARENESS 244 8.3.1.1 LACK OF RESOURCES 245 8.3.1.2 LACK OF TRAINING COURSES 246 8.3.1.3 MEDIA 247 8.3.2 GOVERNMENT SYSTEM FEATURES 250 8.3.2.1 POLICIES 251 8.3.2.2 SERVICES 252 8.3.2.3 LACK OF COLLABORATION WITH PARENTS 255 8.4 CONCEPTUALISATION OF DISABILITY AND MEDICAL MODEL IN SAUDI ARABIA 256 8.4.1 DISABILITY MEANING AND THE USED LANGUAGE 257 8.4.2 FINDING A CURE 262 8.4.3 MENTAL AND SOCIAL PRESSURE 264 8.4.4 FUTURE 268 8.5 RECOMMENDATIONS ABOUT FAMILY SUPPORT SERVICES 270 8.5.1 ISSUES TO BE CONSIDERED 271 8.5.2 USEFUL TOOLS FOR FAMILY SUPPORT CENTRES 274 8.6 SUMMARY 275 CHAPTER 9: CONCLUSION 276 9.1 CONCLUSION 276 9.2 LIMITATIONS AND DIFFICULTIES 279 9.3 RECOMMENDATIONS 279 9.4 SUGGESTIONS FOR FUTURE RESEARCH 280 9 9.5 SUMMARY 281 REFERENCES: 282 APPENDIX: 302 A: INDIVIDUAL INTERVIEW QUESTIONS: 302 B: FOCUS GROUP QUESTIONS: 306 C: THE ETHICAL REQUIREMENTS: 308 D: INFORMED CONSENT PARTICIPATES: 309 E: EXAMPLE OF TRANSCRIPTION: 310 F: EXAMPLES OF CODING BY SIMPLEMIND: 311 List of tables and Figures Page Table 1: a list of fathers that were interviewed 104 Table 2: a list of mothers that were interviewed 105 Figure 1: A representation of the different sections of this chapter, illustrating the structure of the discussion.
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