Akhdar, Fathi; (1994) Childhood disability: parents' perceptions and experiences in Saudi Arabia. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

Worldwide, at least one child in ten is born with, or acquires, a physical, mental or sensory impairment that will interfere with their capacity for development unless some special assistance, support, or care is provided. In addition to "number counting", this study is one of very few which investigates disability from the families' viewpoint and which identifies the problems and strengths experienced both at home and in using services. The study is also one of the rare investigations that identify the challenge to health workers if they are to provide long-term care in true close collaboration with parents. The current study is also important because very little work has been done on any community aspect of health problems in Saudi Arabia. There has been an urgent need for the development of culturally appropriate community based enquiry in the Kingdom. This study has developed an approach which can now be used for a number of other health problems in the country. Six key components of a community health enquiry in Saudi Arabia in the 1990s are identified. A large-scale prevalence study was conducted contacting 1120 households with 2695 children achieving a 90% response rate with 2432 children seen for screening at the school or welfare clinic. It is recognized that the non-respondents may have led to under-reporting of prevalence rates. The non-respondents were 78 children now living outside the area, and 186 who dropped out of school whose parents reported that they were all right, but refused testing. 31 children with impairment considered severe by both the parents and the author were identified. The author had many contacts with each family over the study period. These contacts ranged from accompanying the family to appointments for medical, therapy and other sessions, to in- depth interviews. As the interactions progressed, the parents would disclose more information and it became possible to understand their feelings and the emotional aspects of living with a disabled child. The number of contacts varied from 20-25; and 20-25 hours were spent with each mother and father together. In keeping with Saudi culture and practice, the father answered all the questions in the early interviews. During the many contacts, the families explored their deeper feelings and the way they reacted to the problems that confronted them. Throughout the process the family needed a great deal of support in the form of understanding, kindness, caring and being there when needed. But, by the very expression of their hopes and fears (difficult though it was at times), the families seemed to have been helped to come more to terms with their child's impairment. Thus, the study became a help to the families themselves. Further information was obtained from key informants, teachers, children surveyed in the schools, grandparents and 25 religious leaders (Imams). The practical difficulties of undertaking such a study in Saudi Arabia are not negligible and some of the challenges such a study presents are described. Overall, this study has developed a practical procedure for community enquiry in Saudi Arabia which others are likely to find useful. (Abstract shortened by ProQuest.)

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