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 the primary carer; 88 per cent had at least a college level of education and 41 per cent were engaged in further study, with 28 per cent being unemployed; 93 per cent of them were married; 58 percent lived in a city; 36 per cent earned less than SAR60,000 p.a. while 54 per cent earned between SAR60,000 and SAR120,000 p.a. All families had at least one child (between 2-17 years of age), and 86 families (43% of the sample) had one child with intellectual disability. Of them, 52 children had a mild intellectual disability and 31 had a moderate intellectual disability. The major findings of the current study were as follows. First, the Family Quality of Life scale developed for the current study was found to be valid and reliable for Saudi Arabian families. Second, it was found that families who were caring for a child with an intellectual disability reported a significantly lower quality of life than those who did not. Third, it was found that socio-economic status and marital status were the major factors impacting on family quality of life for families with and without children with intellectual disability; and further, that higher socio-economic status and being married (as opposed to divorced) mitigated the negative impact on family quality of life of caring for a child with an intellectual disability. Fourth, the qualitative results of interviews with selected families largely cohered with the quantitative results of the questionnaire. However, although the quantitative analysis showed that the subscales of family religiosity and social and religious perspectives on intellectual disability were not reliable, the interviews revealed that the functional role of religion varied and played important, albeit different roles, in how families dealt with the fact that they had children with intellectual disability. Finally, the request for special assistance on the part of families of children with intellectual disability was largely dependent on their socio-economic status.
The main research implication of this thesis is that the augmented Saudi Arabian Family Quality of Life can be used in future family quality of life studies for the Saudi Arabian population, and may be extended to other Gulf countries to see whether the scale has validity in culturally similar societies beyond Saudi Arabia. The current study also found that social acceptance/stigmatisation of children with intellectual disability had an impact on family quality of life, but the precise sources of social stigmatisation were not explored. This could be an important area for future research. Another important implication of the current study is that attempting to capture the impact of religion on family quality of life requires qualitative analysis in the form of interviews because subjective interpretations of the role of religion in people‟s lives are sometimes only revealed via discussion (as opposed to questionnaires).
Another finding with important practical/policy implications is that families who have a relatively lower family quality of life are also those who have low incomes, meaning that they are already vulnerable and potentially „marginalized‟ groups. Government programs providing real income and employment support is a possible albeit partial solution in such cases. Furthermore, there are other forms of support, not currently available in Saudi Arabia, that can also be provided to families of children with intellectual disability. These include (1) assistance with parenting skills, (2) better tailored education services for children, (3) assistance with marital stability, and (4) combating stigmatisation
