Family Quality of Life for Families of Children with Intellectual Disability in Saudi Arabia

372 Pages·2017·2.72 MB·English

Family Quality of Life for Families of Children with
Intellectual Disability in Saudi Arabia

Khalid Habib Alshamri

Submitted for the award of Doctor of Philosophy in the School of Education,
Western Sydney University

August, 2016

i
Acknowledgements

I would like to acknowledge the following people who have greatly assisted me
in conducting the current study.
Thanks are due first to my supervisors Christine Johnston and Danielle Tracy.
Their assistance has been invaluable and their patience has been remarkable. Thanks
are also due to Russell Thomson for his helpful advice about the statistical work
conducted for this thesis. I am grateful to all those families who participated in the
current study, to the principals of the schools who assisted with the distribution of the
questionnaires used in the current study, and to the Kingdom of Saudi Arabia‟s
Ministry of Education for providing me with access to schools which made the
current study possible.
Thanks also to Al-Jouf University for providing the financial support necessary
to study in Australia.
Special thanks must also go to my wife and children, who have given me the
strength and encouragement to complete the current study.

ii
Declaration

This work contains no material which has been accepted for the award of
another degree or diploma in any university or other tertiary institution, and to the
best of my knowledge and belief, contains no material previously published or
written by another person except where due reference is made in the text.

Khalid Alshamri
31 August 2016, Sydney

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Table of contents
Chapter 1 : Introduction ................................................................................. 1
1.1 Overview and Justification ............................................................................ 1
1.2 Outline of Thesis Structure ............................................................................ 7
Chapter 2 : Intellectual Disability and Saudi Arabia ................................... 9
2.1 Introduction .................................................................................................... 9
2.1.1 Systematic Review ......................................................................................... 9
2.2 Origins, Definition, and Diagnosis of Intellectual Disability ...................... 12
2.3 Aetiology and Prevalence of Intellectual Disability .................................... 15
2.4 History of United States and international legislation regarding individuals
with disabilities ............................................................................................ 17
2.5 The Social Construction of Disability.......................................................... 21
2.6 Disability and Intellectual Disability in Saudi Arabia ................................. 23
2.6.1 Prevalence of Disabilities and Intellectual Disability in Saudi Arabia ........ 23
2.6.2 Stigma towards Disabilities in Saudi Arabia ............................................... 29
2.6.3 Cultural Perceptions about Disabilities and Intellectual Disability in Saudi
Arabia ........................................................................................................... 30
2.6.4 Legislation and Support Services for Disabilities and Intellectual Disability
in Saudi Arabia ................................................................................................
.............................................................................................................. 33
2.6.5 Educational Policy and Practice for Students with Disabilities in Saudi
Arabia ........................................................................................................... 35
2.7 Saudi Arabian Culture: Hofstede‟s Analysis ............................................... 36
2.8 Conclusion ................................................................................................... 42
Chapter 3 : Family Quality of Life and the Factors Associated With It .. 45
3.1 Introduction .................................................................................................. 45
3.1.1 Systematic Review ....................................................................................... 46
3.2 Quality of Life and Family Quality of Life ................................................. 48
3.2.1 The Emergence and History of Quality of Life and Family Quality of Life 48
3.2.2 Definition and Construct of Quality of Life and Family Quality of Life .... 50
3.2.3 Relationships between Disabilities and (Family) Quality of Life ............... 52
3.3 Measures of Family Quality of Life............................................................. 57
3.3.1 Identification of the Need for a Psychometrically Strong Measure of Family
Quality of Life..................................................................................................
.............................................................................................................. 57
3.3.2 Origins, Development, and Application of the Beach Center Family Quality
of Life Scale ................................................................................................. 59
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3.3.3 Customization of the Beach Center Family Quality of Life Scale for Saudi
Arabia ........................................................................................................... 63
3.4 Factors Impacting on Family Quality of Life .............................................. 71
3.4.1 The Impact of Demographic Factors on Family Quality of Life ................. 72
3.4.2 Family-specific Factors for Families of Children with Intellectual disability .
.............................................................................................................. 85
3.5 Conclusion ................................................................................................... 89
Chapter 4 : Research Aims, Questions and Hypotheses ............................ 93
4.1 Introduction .................................................................................................. 93
4.2 Statement of the Problem ............................................................................. 93
4.3 Research Aims, Questions and Hypotheses ................................................. 96
4.3.1 Research Aims ............................................................................................. 96
4.3.2 Research Questions and Hypotheses ......................................................... 100
4.4 Significance of the Research ...................................................................... 103
4.5 Conclusion ................................................................................................. 106
Chapter 5 : Methodology............................................................................. 108
5.1 Introduction ................................................................................................ 108
5.2 Research Design......................................................................................... 108
5.2.1 The Sequential Quantitative-Qualitative Analysis and Research Aims .... 114
5.2.2 Overview of Sequential Phases of Investigation ....................................... 117
5.3 Phase 1: Development and Face Validation of the Saudi Arabian Quality of
Life Questionnaire ..................................................................................... 118
5.3.1 Participants ................................................................................................. 120
5.3.2 Procedure ................................................................................................... 121
5.3.3 Results ........................................................................................................ 124
5.4 Phase 2: Quantitative Validation and Implementation of the Saudi Arabian
Family Quality of Life Questionnaire ........................................................ 127
5.4.1 Procedure for Recruitment of Participants ................................................. 128
5.4.2 Participants ................................................................................................. 130
5.4.3 Data Collection Instrument: Saudi Arabian Family Quality of Life
Questionnaire ............................................................................................. 136
5.4.4 Data Analysis. ............................................................................................ 143
5.5 Phase 3: Qualitative Examination of Saudi Arabian Family Quality of Life. .
................................................................................................................... 145
5.5.1 Participant Recruitment and Characteristics. ............................................. 145
5.5.2 Data Collection Instrument: Semi-Structured Interviews .......................... 148
5.5.3 Procedure ................................................................................................... 150
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5.5.4 Data Analysis ............................................................................................. 151
5.6 Ethical Concerns ........................................................................................ 153
5.7 Conclusion ................................................................................................. 155
Chapter 6 : Testing the Validity and Reliability of the Saudi Arabian
Family Quality of Life Questionnaire ................................................................ 157
6.1 Introduction ................................................................................................ 157
6.2 Testing for Validity using Exploratory and Confirmatory Factor Analyses ....
................................................................................................................... 159
6.2.1 Exploratory Factor Analysis of Religiosity (Part 2) .................................. 159
6.2.2 Exploratory Factor Analysis of other Religio-cultural Factors related to
Having Children with Intellectual disability (Part 4) ................................. 164
6.2.3 Exploratory Factor Analysis of Religious Support (last six items in Part 3) ...
............................................................................................................ 169
6.2.4 Confirmatory Factor Analysis of the Saudi Arabian Family Quality of Life
Scale (Part 3) .............................................................................................. 170
6.3 Reliability Analysis .................................................................................... 177
6.3.1 Reliability Analysis of Religiosity (Part 2) ................................................ 178
6.3.2 Reliability Analysis of other Religio-cultural Factors related to Caring for a
Child with an Intellectual Disability (Part 4) ............................................. 180
6.3.3 Reliability Analysis of Saudi Arabian Family Quality of Life Scale (Part 3) .
............................................................................................................ 182
6.4 Correlation Analysis .................................................................................. 184
6.5 Conclusion ................................................................................................. 191
Chapter 7 : Modelling of Saudi Arabian Family Quality of Life and
Analysis of Differences Related to Having Children with Intellectual disability
..................................................................................................... 193
7.1 Introduction ................................................................................................ 193
7.2 The Impact of Having a Child with an Intellectual Disability on Family
Quality of Life............................................................................................ 194
7.3 Differences between Families with respect to Demographic and Other
Factors ........................................................................................................ 202
7.4 Conclusion ................................................................................................. 205
Chapter 8 : Qualitative Analysis: Themes from the Interviews .............. 207
8.1 Introduction ................................................................................................ 207
8.2 Key Comparisons along Axes: Families with Relatively Higher/Lower
Quality of Life and with/without Children with Intellectual disability ..... 208
8.2.1 Thematic Comparisons between Families along Axis 1: Relatively
Higher/Lower Family Quality of Life........................................................ 210
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8.2.2 Thematic Comparisons between Families along Axis 2: With/Without
Children with Intellectual disability........................................................... 221
8.3 Perspectives about Intellectual Disability .................................................. 228
8.4 Role of Special Education .......................................................................... 232
8.5 Summary of Interview Findings ................................................................ 238
8.6 Conclusion ................................................................................................. 240
Chapter 9 : Discussion of Findings, Recommendations and Conclusions ....
..................................................................................................... 243
9.1 Introduction ................................................................................................ 243
9.2 Discussion of Findings ............................................................................... 244
9.2.1 Construction and Evaluation of the Saudi Arabian Family Quality of Life
construct ..................................................................................................... 244
9.2.2 Factors Impacting on and Relationships among the Constructs of Saudi
Arabian Family Quality of Life ................................................................. 252
9.2.3 Comparisons between Families with / without Children with Intellectual
disability ..................................................................................................... 258
9.3 Strengths of the Current Study ................................................................... 278
9.4 Limitations of the Current Study ............................................................... 281
9.5 Implications for Further Research ............................................................. 286
9.6 Recommendations for Government Support and Education ..................... 291
9.6.1 Assistance with Parenting Skills ................................................................ 294
9.6.2 Better Tailored Education Services for Children ....................................... 295
9.6.3 Assistance with Marital Stability ............................................................... 295
9.6.4 Combating stigmatisation .......................................................................... 296
9.7 Thesis Conclusion ...................................................................................... 297

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List of Tables
Table ‎2-1 :Prevalence of severe disability amongst men and women in Saudi Arabia .......... 27
Table ‎5-1: Characteristics of Phase 2 Participants ............................................................... 131
Table ‎5-2: Characteristics of Questionnaire Participants‟ Children ..................................... 135
Table ‎5-3: Characteristics of Interview Participants ............................................................ 147
Table ‎6-1: Variance Explained for Religiosity Items (Part 2) .............................................. 160
Table ‎6-2: Goodness-of-Fit Indicators ................................................................................. 161
Table ‎6-3 Component Loadings of Religiosity (Part 2) (for loadings > 0.3) ....................... 163
Table ‎6-4: Variance Explained for „Other‟ Religio-cultural Factors (in Part 4) ................... 164
Table ‎6-5: Goodness-of-Fit Indicators ................................................................................. 166
Table ‎6-6: Component Loadings: „Other‟ Religio-cultural Factors (in Part 4) (for loadings >
0.3) ...................................................................................................................................... 167
Table ‎6-7: EFA Validity of Six Items concerning „Religious Support‟ (item 26-31) in Part 3
............................................................................................................................................ 170
Table ‎6-8: Variance explained for Family Quality of Life Items ......................................... 171
Table ‎6-9: Goodness-of-Fit Indicators for Family Quality of Life Model ........................... 173
Table ‎6-10: Confirmatory Factor Analysis per Dimension using AMOS Program for Part 3
............................................................................................................................................ 174
Table ‎6-11: Factor Loadings for all Family Quality of Life Items in Part 3 ........................ 177
Table ‎6-12: Reliability Analysis of Religiosity Items (Part 2) ............................................. 179
Table ‎6-13: Reliability Analysis of other Religio-cultural Factors related to Caring for a
Child with an Intellectual Disability (Part 4) ....................................................................... 181
Table ‎6-14: Reliability Analysis of Family Quality of Life Measure in Part 3 .................... 183
Table ‎6-15: Correlations within Original Family Quality of Life Factors (items 1-25 in Part
3) ......................................................................................................................................... 186
Table ‎6-16: Correlation between Factors Extracted from Family Quality of Life Factors (Part
3) and Factors Extracted from Religiosity (Part 2) and other Religio-cultural Factors related
to Caring for a Child with an Intellectual Disability (Part 4). .............................................. 188
Table ‎6-17: Correlations between Religiosity (Part 2) and other Religio-cultural Factors
related to Caring for a Child with an Intellectual Disability (Part 4) ................................... 190
Table ‎7-1: Mean Family Quality of Life Comparison: With/Without Children with
Intellectual Disability .......................................................................................................... 196
Table ‎7-2: Independent t-test Family Quality of Life between Families With and Without
Children with Intellectual disability .................................................................................... 198
Table ‎7-3: Correlations of Extracted Religiosity Factors (from Part 2) with Family Quality of
Life (Part 3) for Families of Children With/Without Intellectual disability ........................ 201
Table ‎7-4: ANCOVA Results for Families of Children with Intellectual disability ............. 203
Table ‎7-5: ANCOVA Results for all Participants (With/Without an Intellectual Disability)
............................................................................................................................................ 205
Table ‎8-1: Axes of Interview Participants ........................................................................... 209

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List of Figures
Figure ‎2.1: Prevalence of disability in countries in the Arab region (% of total population).
(Source: Economic and Social Commission of Western Asia and the League of Arab States,
2014) ..................................................................................................................................... 24
Figure ‎2.2: Prevalence of severe and extreme disability in Saudi Arabia compared to other
countries. (Source: Almubarak, 2008). .................................................................................. 26
Figure ‎2.3 :Hofstede‟s cultural profile of Saudi Arabia. (Source: Hofstede, 2015). .............. 37
Figure ‎5.1: Sequence of Phases of Study ............................................................................ 117
Figure ‎6.1: Variance Explained for Religiosity Items (Part 2) ............................................. 160
Figure ‎6.2:Variance Explained for „Other‟ Religio-cultural Factors (in Part 4) ................... 165
Figure ‎6.3: Variance Explained for Family Quality of Life Items ....................................... 172
Figure ‎6.4: Confirmatory Factor Analysis Factors Cross-correlation .................................. 175

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Abstract
This thesis was primarily concerned with the quality of life of Saudi Arabian families
who are caring for children of primary school age with intellectual disability. The
four research aims were as follows. (1) Construct and verify the validity of the Beach
Center Family Quality of Life Scale, augmented to include variables assumed to be
relevant to Saudi Arabian families of children with intellectual disability, including
the new measures of religiosity and other religio-cultural factors related to caring for
a child with an intellectual disability. (2) Examine whether the identified factors of
the Saudi Arabian Family Quality of Life questionnaire, the measure of religiosity,
and the measure of other religio-cultural factors related to caring for a child with
intellectual disability are reliable. (3) Determine whether caring for children with
intellectual disability, compared to caring for children without intellectual disability,
is associated with family quality of life among Saudi Arabian families. And whether
demographic factors, religiosity, and other religio-cultural factors were associated
with family quality of life for Saudi Arabian families were the same for families with
and without children with intellectual disability. (4) To explore the possible
phenomenological reasons behind the observed quantitative results for examining
family quality of life of Saudi Arabian families, and to discern what kinds of support
parents feel they need.
In order to achieve these aims, quantitative and qualitative data were collected
about family quality of life of Saudi Arabian families with and without children with
intellectual disability. A questionnaire based on the Beach Center Family Quality of
Life Scale, modified for Saudi Arabia, was administered to 201 families, and
interviews were conducted with eight Saudi families. Of the 201 participant families,
82 per cent of the respondents/participants were male and 28 per cent of them were
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