Alrajhi, Rehab Mohammed; (2021) Parents’ and Professionals’ Perceptions of Services for Autistic Children and their Families in the Kingdom of Saudi Arabia. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

Background: The prevalence of autism has been on increased significantly over recent years. As the number of children diagnosed with autism continues to increase worldwide, including in Saudi Arabia, one should anticipate that their numbers will also increase in centres settings. Therefore, adequate services are urgently needed for autistic children and their families. Despite some development of services, research has shown that few of these provisions meet autistic children’s unique needs and meet their families' needs. The status of the services in Saudi Arabia, where this research was conducted, is not an exception and is a great need for evidence-based data to restructure the current services. Objective: The aim of this study was to examine the parents’ and the professional’s perception of services for autistic children and their families in Saudi Arabia. The thesis included three studies with each having its unique purpose. Study One, using focus groups, aimed to fill the research gap by seeking to understand the experiences and perceptions about the current services from the perspective of Saudi mothers raising autistic children. Study Two used a survey to gather data on the parental evaluation of the current services available in different parts of Saudi Arabia (SA) and the possible factors associated with the outcomes (families’ socio-economic status and demographics). Finally, Study Three used individual interviews to gather data on professionals’ perceptions and their experiences related to autism services and find possible solutions to develop the autism-related services in SA. Methods: A mixed methodology approach was used to provide in-depth accounts experiences, perspectives and needs of parents and professionals. Focus groups (Study One) were used to explore the most important needs of parents of autistic children. In the focus groups, twenty-nine mothers of different backgrounds participated in the study. Seven focus groups were conducted, and the number of participants in each ranged from three to seven participants. The survey (Study Two) design was based on the outcomes from Study One focus group. A total of 273 parents participated across the country; the survey includes parents’ demographic information, and raking was used to indicate needs for the services. A hard copy was distributed by handing out the survey in public and private centres and clinics, and an online copy was distributed by sending the link to participants using Twitter, WhatsApp, and text messages. Finally, interviews with specialists (Study Three) examined professionals’ perception of autism-related services available in SA. Seven specialists were interviewed and offered their insights into existing services and suggestions on the development of future services. Results: Study One generated three themes; parental experiences of daily home/school provisions, suggestions to enhance existing services, and suggestions for future services. Study Two indicated that parents ranked all services as a priority regardless of where they habitually lived. The study found that centres were the most important provision for the parents and their children. Study Three indicated that some of the challenges seen by the professionals included: lack of proactive service providers, unqualified professionals, difficulty in accessing the services, and barriers to involving families. Several recommendations drawn up by the professionals to overcome the challenges included: improvement accessibility to autism related services, improvements to the current training and personal development and updating courses, developing partnership with families. Discussion: The current thesis provides findings from the perspectives of service users and services providers. Interestingly, when taken together, the outcomes appear to move in the same direction, namely the importance of service improvement in terms of quality and availability of services. SA is by no means the only country facing these challenges; however, with the growing numbers of autistic children, it is important for educational and healthcare systems to act now. Therefore, this thesis has found from all three studies that parents of autistic children have unmet needs. Accordingly, based on parents’ and professionals’ perceptions, this study found five fundamental factors that can help to develop autismrelated services in SA. These include: i) developing a family-centred approach to involve families, ii) developing training for professionals’ qualifications and provide ongoing personal development plans for specialists, ii) developing country-specific enforceable laws and legislation driven by the central SA government and iv) increasing the number of services throughout the country.

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