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 Completed Research 

 

The Rights of Handicapped in Islam

 

  i.        Primary Investigator: Mohammed Mostafa Mohammed I. Ghaly , Ph.D

 ii.        Co-Investigator:

iii.        Source of Support:

iv.        Project Aims: Exploring the status of the handicapped and their main rights as viewed in Islam as contribution for a better understanding of the needs of and provisions for the handicapped in the norms of Islamic religion.

 v.        Duration: 5 years

vi.        Start Date: September 2002

vii.        Completion Date: 31 August 2007

viii.        Summary:

ix.        Research Outcome:

This project was funded for a PhD thesis. It tackles one of the novel topics viz., disability in Islam, in one of the promising fields of research, namely religion and disability. Academic studies in this field in general are still scarce and concerning the religion of Islam in particular, they are almost absent. Every part of this dissertation represents a new scholarly contribution in this field.

On 23 August 2007, the PI submitted the final draft, consisting of 322 pages, to the promoter. Below, you find a synopsis of the main contents of this draft along with the main results and conclusions. The study consists of three main parts, Part I (Introductory Part), Part II (Perspectives in Islamic Theology) and Part III (Perspectives in Islamic Jurisprudence).  

Introductory Part

Part I (51 pages) tackles six main points. The first point reviews the interest in the topic of disability within the documents of the United Nations Organizations. The second point traces this interest within literature on religion in the broad sense. By the third point, the study focuses on Islam in particular by giving an analytical presentation about the modern studies, written in Arabic or foreign languages, on the position of people with disabilities in the Islamic normative sources. In this presentation, showing the main and unique additions of this PhD dissertation is also clearly stated. The fourth point of this part gives an overview of the research question, methodological approach and main focus. The main question raised in this study is; what is the status of people with disabilities in Islam as viewed by Islamic Theology and Islamic Jurisprudence? To answer this question, the systematic constructive methodology was adopted in order to fathom out the position and main rights of people with disabilities as depicted in the early and modern theological and juristic literature in Islam. The fifth point elaborates the structure and organization of the present study. The last point is dedicated to an insightful investigation of terminology used in the field of disability whether in modern studies or in the early normative Islamic sources.

Perspectives in Islamic Theology

Part II (59 pages) examines the disability issues related to Muslim beliefs as handled in Islamic Theology. Despite the importance of the theological dimension in this topic, no previous study is known to have handled it before. Thus all information and analyses given in this part are unique, novel and unprecedented. To my mind, relevant discussions available in theological sources of Islam fall also within the human-rights approach. To a believing person afflicted with disabilities, answering the ontological and theological questions about the existence of disability in life and how to deal with according to the norms of one’s religion is by no means less important or less urgent than answering his financial and medical needs.

This part, dedicated to studying people with disabilities in Islamic Theology, handles two main questions, viz., “Why does disability exist as long as Allah is the Omnipotent, All-Just and All-Merciful?” and “What should be done if someone got afflicted with disability?” Theological discussions on the first question can be classified under the theme of “Speculative Theology” whereas discussions on the second questions under the theme of “Practical Theology”. The former represents a bid to explain the ontology of disabilities and sufferings. The latter investigates how to live with such disabilities and misfortunes. These two arguments were respectively the topics of section I and II of this part.

 

Section I (Speculative Theology), handles the theological clarifications and justifications advanced by Muslim scholars in response to the existence of disabilities and evil in general. As a theistic religion, a belief in the perfect image and spotless character of God was always a central point. The existence of disabilities, pains or evils in general should not cast doubts on the perfect character of God. This was a strict guideline or red line that should not be transgressed and different groups, despite their discrepancies, stuck to this line. Two main trends can be traced among Muslim scholars who tried to solve the apparent paradox of believing in a powerful and merciful God on one hand and living this life which is full of pains and evils on the other. These two trends are elaborated in chapter I and II of this section, respectively.

Chapter I studies the first trend, termed in this study as the No-Problem Trend. The advocates of this trend opined that it was irrelevant to raise the question, “How to understand or justify the presence of nasty and painful things in the light of the fact that God the Compassionate, the Merciful is the Supreme Power and that He has control over this universe?” To them, the existence of disabilities and different forms of pains and sufferings do not cause theological or ontological problems.

Chapter II elaborated the second trend, termed in this study as Problem-Oriented Trend. The proponents of this trend conceded that the existence of disabilities and other forms of pains and sufferings represented a theological problem that should be handled. However, attempts to explain or solve this problem should not be at the cost of God’s perfect character.

Section II (Practical Theology) handles the question, “What should be done if someone got afflicted with disability?” In their bids to explain the existence of disabilities in the light of the powerful and merciful God, Muslim scholars were aware that their rational arguments may not bring full relief to all questioners nor would they bring these questions to an end. Restoring relief and maintaining peaceful relations with God in such intriguing issues, as sources indicated, one is in need of both mental satisfaction and spiritual serenity. The aforementioned theological arguments could create a sort of mental satisfaction but not necessarily spiritual serenity. Methods of attaining spiritual serenity were the main focus of this section.

Perspectives in Islamic Jurisprudence

Part III (155 pages) is again a new scholarly contribution in this field. Most studies written up to this moment just sum up the juristic rules related to people with disabilities as recorded in the classical juristic sources. This part tackles the issue of people with disabilities in Islamic Jurisprudence in broader perspective.

This part focuses on what can be termed in our present time as the rights of people with disabilities. The main question can be formulated as, “what is the social and financial position of people with disabilities as recorded in juristic sources of Islam?” Aspects chosen to fathom out this position were mainly based on availability of relevant information in juristic sources on one hand and their centrality for making the life of people with disabilities more tolerable on the other. It will be noticed also that the different aspects of the social and financial position of people with disabilities as discussed in this part are also central in modern discussions on people with disabilities especially as reflected in the UN documents in this respect. The two main aspects of the position of people with disabilities are studied in two main sections, the first focused on the social position whereas the second on the financial one.

Section I (Social Position) fathoms out whether disabilities would injure, harm or diminish the dignity guaranteed in Islam for human beings in general. Dignity of people with disabilities is very central at the moment in discussions on the rights of people with disabilities. This section shows that discussions, which were sometimes heated ones, took place on the dignity of people with disabilities in particular. This dignity is tackled on the theoretical and practical level each of which is studied in a separate chapter.

Chapter I studies physiognomy whose main purport was that a physical defect or deformity reflects a similar one in one’s soul. In other words, people with bad or ugly outlook bear also a likewise character. In this framework, people with physical disabilities can be easily discriminated and offended because of their apparent physical abnormality. Beyond the cursory references to juristic sources in a few number of studies, combining between physiognomy on one hand and the image of people with disabilities in juristic circles was a completely unstudied topic before this dissertation. This chapter studied the standpoints of Muslim jurists towards physiognomy and its influence on the dignity of people with disabilities within two main legal schools, namely, the Shâfi‘î and the Hanbalî schools. It was just the available information that has imposed this choice. Outside these two schools, pertinent information was scanty and almost absent. However, a note in passing was given at the end of the chapter to clarify the standpoints of other schools in the light of available information.

Chapter II attempts to give the issue of the dignity of people with disabilities a practical touch. For instance, would writing a book enumerating prominent figures with disabilities throughout history be seen by a jurist as breaching the dignity of those people? If so, what would be his reaction? A 16th century book entitled Al-Nukat al-Zirâf fî man Ibtuliya bi al-‘Âhât min al-Ashrâf (The Cute Anecdotes on Luminaries Afflicted with Disabilities), which is still in a manuscript form, answered these questions in reality.

Section II (Financial Position) focuses on the financial position of people with disabilities by elaborating a number of aspects each of them occupied a separate chapter. These aspects are deemed financial in the sense that enjoying them would bring or cost money in the normal course of events. Keeping in view that work is the main financial revenue which brings money; juristic discussions on the employability of people with disabilities were the starting point in this regard. Because disability is, normally speaking, the main obstacle to find a suitable job, possibilities of medical treatment for people with disabilities were fathomed out from a juristic perspective in the second chapter. The last and longest chapter in this section discusses the overall theme of financial security in the case of being unable to achieve any of the first two rights. In other words, how can such a person with disability still enjoy financial security if he/she cannot work and disability cannot be treated? Jurists’ discussions around this question are the main focus of this chapter.

By discussing employment, Chapter I handles one of the fundamental rights of people with disabilities. According to the International Labour Organization (ILO), work of decent quality is the most effective means of escaping the vicious circle of marginalization, poverty and social exclusion. The two chapters entitled “ijâra” and “ji‘âla” represent the main door to trace relevant juristic discussions on employability of people with disabilities. After a general introduction about these two terms, the chapters reviews the juristic discussions on employing people with disabilities for four jobs which are always associated with high prestige especially in religious milieus. The list included the positions of muezzin (one who makes call or adhân for prayer), imâm (one who leads the ritual prayer), judge and the chief leader of the state.

Chapter II reviews the juristic sources searching for viewpoints and attitudes towards treating disabilities. Two main methods are traced. The first method, termed in juristic sources as “physical medicine”, is based on using medicines and drugs as known within the realms of the science of medicine at the present time. The second method, called “spiritual medicine”, makes use of specific religious formulae including texts from the Qur’ân, words ascribed to the Prophet of Islam, etc. This chapter gave a detailed overview of these two methods within Islamic jurisprudence, the attitudes of Muslim jurists towards these two methods and finally “treatments” developed within each method to prevent the occurrence of disability or to cure it. The present chapter, by studying the opinions within early and modern Islamic jurisprudence on different methods of treating disabilities, tackles an almost non-trodden field in modern literature.

Bearing in mind the possibility of being neither able to find a paid job nor to cure the disability, Chapter III focuses on the means of achieving financial security for this group of people. Surveying the juristic sources showed that if disability was a barrier to find job and if this disability could not be cured, ending up in a miserable destituteness should not be the third option. These sources presented a number of financial revenues through which this group of people can afford their needs. In this chapter, five main financial revenues are in focus. As a form of social solidarity among the family members, maintenance (nafaqa) is incumbent upon the well-off members in order to support the poor members of the family. People with disabilities as parents, children, wives and relatives are entitled to receive nafaqa from the rich members of the family. As family members, people with disabilities can still enjoy financial support from bequest (wasiyya) and family endowment (waqf ahlî). Detailed juristic discussions on the regulations of these three financial revenues are elaborated focusing on those with relevance to people with disabilities. Failing to fulfill the financial needs of a person with disability within the family circle, society and state still have their own roles in securing financial security for people with disabilities. Two main financial revenues are in order in this respect, viz., welfare endowment (waqf khayrî) and Zakâh. These two financial revenues are supposed to fulfill the financial needs of people with disabilities. In case they are not sufficient, jurists discussed whether extra financial obligations can be imposed on the rich to fill in this financial gap. All these discussions are elaborated in detail in this chapter.

Bibliography (54 pages) the dissertation includes an extended bibliography of more than 940 Arabic sources and manuscripts and works published in foreign languages.

 x.        Publications :

-          "Islam en Handicap: Theologisch Perspectieven", in Theologisch Dagbald, vol. 2, issue 3, September 2005, Netherlands, pp. 20-23. (A copy is already sent to the Center).

-          “Writings on Disability in Islam: the 16th-Century Polemic on Ibn Fahd’s al-Nukat al-Zirâf”, in Arab Studies Journal, Faal2005/spring 2006, vol. XIII no. 2/vol. XIV no. 1, pp. 9-38. (A copy is already sent to the Center).

-          “Islam en handicap: praktijk thema’s and Islamitische ethische opvattingen”, Tijdschrift voor Gezondheidszorg en Ethiek, jaargang 17, no. 2, 2007, pp.40-45 (A copy is already sent to the center).

-          “Physiognomy: A Forgotten Chapter of Disability in Islam: The Discussions of Muslim Jurists”, Biliotheca Orientalis, (submitted and waiting for approval. Once it is accepted for publication, I will send you the final version).

-          “Physical and Spiritual Treatment of Disability in Islam: Perspectives of Early and Modern Jurists” in Journal of Religion, Disability and Health (submitted and approved by one reviewer. Once it is approved by the other reviewers and accepted for publication, I will send you the final version).



Hunting For One of the Autism Genes That Might Be Linked To Osteopetrosis with Renal Tubular Acidosis

  i.        Primary Investigator: Namik Kaya, Ph.D. (Previously Pinar T. Ozand, Ph.D)

 ii.        Co-Investigator(s): Nadia Sakati, MD, Pinar Ozand, MD, PhD, Brian Meyer, Phd, Ali Al-Odaib, PhD, Dilek Colak, PhD, Michael Nester, PhD

iii.        Source of Support:

iv.        Project Aims: The main goal of this project is to investigate around 30 patients with osteopetrosis and renal tubular acidosis (OPRTA) patients some of them were also found to be autistic. A region of 180 Kb where carbonic anhydrase II, the deficient protein in osteopetrosis and renal tubular acidosis is centered, will be studied for (1) polymorphic markers, (2) carbonic anhydrase II gene mutations; (3) inversion within the region or (4) possible micro-deletion in the region and 5) the microarray gene expression studies will be performed to identify relevant pathways. It is anticipated that a gene or genes linked to autism will be thus identified and should contribute to the research on autism-associated gene markers.

 v.        Duration: 5 years

vi.        Start Date: January 2003

vii.        Completion Date: March 2008

viii.        Summary:

ix.        Research Outcome:

1)     The blood samples were collected from 31 subjects and performed mutation analysis on the patients.

2)     Previously we have performed microarray based gene expression studies on the collected blood samples from the 31 subjects using Affymetrix GeneChip System. We finalized this part of the project but the data analysis was ongoing. During the current progress period, high level gene expression analysis was finalized by Dr. Dilek Colak. Currently, Dr. Colak is performing pathway analysis on the data. In this report we present the results of the high level gene expression analysis as well as preliminary data from the pathway analysis.

3)     We performed copy number analysis and linkage analysis on one family with three affected individuals with OPRTA and autism, and reported showed our aCGH results. This was the only family we had with three affected individuals with autism.

4)     After consulting with Dr. Sakati, we understand that there are more OPRTA families having three or more affected individuals with either autism or mental retardation. Including these families with autism and mental retardation to the study is critical to complete our linkage and copy number studies. This will help us to improve the study as well as increase the power of our linkage and copy number studies. Therefore, we need an extension of one year to finalize our linkage and copy number based studies.

 x.        Publications

The Effect of Using Technology-Based Teaching to Remedy Dyslexic Saudi Elementary Stage Pupils

  i.        Primary Investigator: Abdullah Al-Amry, Ph.D.

 ii.        Co-Investigator:

iii.        Source of Support:

iv.        Project Aims: The study attempts to achieve the following aims:-

1.     Identifying the common characteristics of Primary Stage Saudi dyslexic pupils who have learning difficulties related to dyslexia.

2.     Determining the extent to which those learning difficulties are spread among a sample of Saudi Primary Stage pupils via surveying five different Regions within the Kingdom of Saudi Arabia.

3.     Diagnosing the difficulties which dyslexic pupils encounter on studying primary curricula particularly Arabic, Mathematics, Science and Social Studies in Aseer Region.

4.     Devising appropriate educational programs for the dyslexic pupils in which modern educational technologies (computer and interactive video) would be employed so as to remedy learning difficulties due to dyslexia, in addition to the supplementary guidance programs for teachers.

5.     Applying the technology based programs onto the dyslexic pupils on one hand and on teachers the other hand to measure the effect of using educational technology upon dyslexic pupils. This will be achieved via employing achievement tests in Arabic, Mathematics, Science and Social Studies which will help determine the effectiveness of technology based programs, if there is any.

 v.        Duration: 3 years 6 months

vi.        Start Date: March 2004

vii.        Completion Date: August 2007

viii.        Summary:

Learning difficulties which pupils encounter and may have a negative impact on their achievement, especially in their early educational years, are numerous.  This research aims at identifying the effect of using some modern educational technologies such as computer and interactive video to remedy one of the learning difficulties i.e., Dyslexia.

In order to diagnose dyslexic students, some appropriate already made tools will be used as well as new tools that will be standardized to fit into the Saudi context.  A comprehensive survey for a large sample of Saudi elementary stage pupils (9 to 12 years old) from five different regions in the Kingdom of Saudi Arabia, (about 3000 pupils) will be conducted to identify the dyslexic pupils in terms of: frequency, degree of dyslexia they suffer from, symptoms, causes and effects.

To remedy dyslexia, some educational programs will be designed with the aid of modern educational technologies to be used with dyslexic pupils who find difficulty in studying and learning concepts in Arabic, Mathematics, Science and Social Studies at the Southern Region of Aseer in the Kingdom of Saudi Arabia.   Some guidance programs for teachers and parents will also be devised and used alongside with those technologically based educational programs.  The effect of those programs on the pupils’ achievement of concepts, which were difficult for them to learn, will be measured using some criterion -referenced tests, prepared particularly for this purpose. Recommendations, suggestions and mechanisms for implementing the programs to fully make use of the modern educational technologies to remedy the learning difficulties will be determined accordingly.

ix.        Research Outcome:

Investigating and testing the hypotheses of the study using the appropriate statistical technique, the results of the study can be summed in the following:

Regarding the first hypothesis, the results revealed that the ratio of dyslexia spread differs according to the region and the students' grades. The results showed that the big ratio of dyslexia spread was in Riyadh region (30.6%) and in the sixth grade (14.2%). Generally, the results of this hypothesis refer to the fact that dyslexia spread in the Kingdom of Saudi Arabia copes with the international rate.

Regarding the second hypothesis, results revealed that dyslexics are characterized with incompetence in many of the behavioral characteristics and the basic reading skills compared with their ordinary peers.

The results of the third hypothesis showed that dyslexics suffer from clear incompetence in the auditory perception, word analysis, word meaning, sentence comprehension, paragraph and text understanding compared to their ordinary peers.

The results of the fourth hypothesis refer to the effectiveness of the study programs, especially the dyslexia remedial program, in curing reading difficulties of dyslexics (the study sample). The results of this hypothesis showed that there were significant differences favoring the post assessment as well as an effect volume ranging from 0.59 to 1.8, which clearly proves the accuracy, well planning and application of the program.

Mitochondrial DNA Genotyping in Arab Patients with Various Optic Neuropathies

 

  i.        Primary Investigator: Brian Meyer , Ph.D (Previously Khaled Abu Amero)

 ii.        Co-Investigator: Thomas M. Bosley, MD,Jose Morales, MD

iii.        Source of Support:

iv.        Project Aims:

1.     Determine the possible association between different types of optic nerve injury and mitochondrial DNA mutations and/or mitochondrial respiratory dysfunction [Our preliminary work showed an association of mtDNA mutations and NAION.  Please see attached article, which was recently published in Neurology].  Since we are the first investigators to report such an association, there is a possibility that this association is ethnically based (i.e. exists in only the Saudi population). This highlights the importance of identifying mutations that may be specific to our population. Our next step is to determine the possible link between mtDNA mutations and other optic nerve diseases, including glaucoma, optic neuritis, radiation optic neuropathy and toxic optic neuropathy.

2.     Determine the spectrum of mitochondrial mutations in the Saudi population associated with various optic nerve diseases. Preliminary data for LHON indicates that the Saudi population possesses a different spectrum of mitochondrial mutations from other world populations and that at least two of the three common primary LHON mutation, present in 90% of LHON cases worldwide, are rare in the Saudi LHON patients. Identification of novel mutations in our population may help to confirm the clinical diagnosis for these disorders, particularly for LHON and NAION, and possibly for other disorders as well.

3.     The results obtained from the Objectives 1 and 2 will help us to design a NanochipÒ (electronic microarray) specific for Saudi patients with various optic neuropathies.  NanochipsÒ are tiny silicon plates capable of rapid identification of 100 different DNA sequence variants in a patient’s DNA. The process is fast and accurate and the system was recently acquired by the Department of Genetics, Research Center, King Faisal Specialist Hospital. Once we identify mtDNA mutations common to our patient group, a NanochipÒ will be designed accordingly and offered for future use as a diagnostic services. Such a chip will greatly help in diagnosing mtDNA mutation in Saudi patients with various optic neuropathies. Note that this chip will be specific for the Saudi population.

4.     It is now clear that mitochondrial DNA mutations are associated with at least LHON and NAION, but the reason for this association between mitochondria and optic nerve injury is still not clear.  Elucidating this link is the ultimate goal of our research.  When the link between mitochondrial DNA mutation, mitochondrial functional disturbance, and optic nerve injury is better understood, we will begin to assess possible treatment options.  This may be particularly important in glaucoma, where tens of thousands of Saudi’s are affected and current treatment is frequently inadequate to prevent profound visual loss

 v.        Duration: 12 months

vi.        Start Date: 1 July 2006

vii.        Completion Date: 30 June 2007

Summary: This project is in progress and will result in an evaluation of mtDNA mutations and their respiratory effect in patients with Leber hereditary optic neuropathy (LHON), congenital optic neuropathy, glaucoma, and other types of optic nerve injury.  To date, we have shown that non-arteritic ischemic optic neuropathy (NAION) is commonly associated with intermediate and secondary LHON mutations and with a number of novel mtDNA mutations. So far, we screened 78 patients with clinical LHON and the results are awaiting analysis. We also screened 19 patients with NAION with very interesting findings (A copy of our recent publication is attached).  We are evaluating mtDNA results in patients with clinically defined LHON and optic neuritis.  As a result of these preliminary findings, which mainly indicate a possible association of Mitochondrial DNA mutations and optic nerve injuries in LHON and NAION, we would like to extend this project to include more patients and with different optic nerve injuries

 

Disability at Al-Qaseem Region
  1. Primary Investigator: Dr. Mohamed bin Abdulaziz Al-Sukait
  2. Co-Investigator: NA
  3. Source of Support: Sheikh Odah Al-Abdulla Al-Odah Charity House
  4. Project Aims:
  5. Duration: 12 months
  6. Start Date:
  7. Completion Date:
  8. Summary:
  9. Research Outcome:
    Field study results (descriptive – survey) conducted in 1413H had shown that the most common disabilities among children (research sample), which included 13841 children under 15 years of age, are as follows:
    • Physical disabilities           1.7%
    • Mental disabilities            1.4%
    • Visual disabilities  1.2%
    • Speech disabilities            0.9%
    • Hearing disabilities           0.8 %
    • Social disabilities  0.2%
    • Disabilities of epileptic and chronic diseases 0.1 % 
    • There are fundamental differences regarding rates of disabilities among children and hereditary factors.
    • There are big variations among services rendered to children with disabilities (10.1%).
    • The most needed services are the rehabilitation services (56.7%), then educational services (40.1%), then therapeutic services (37.6%)

Investigative Research on Disability in Al-Medina Area
  1. Primary Investigator: Dr. Mohsen bin Ali Fares Al-Hazmi
  2. Co-Investigator:
  3. Source of Support: Disabled Children Association
  4. Project Aims:   
  5. Duration: 6 months
  6. Start Date: 20/1/1995
  7. Completion Date: 19/7/1995
  8. Summary:
  9. Research Outcome:
    1. Results:
      •     The actual process of checking the investigation form and its accuracy as well as data filling and its categorization and analysis, was carried out during the period from 18/8/1415H to 29/1/1416H. Data were collected, and available records were studied in relevant locations, i.e. the Comprehensive Rehabilitation Center and Social Care Society (under Ministry of Labor and Social Affairs), institutes of intellectual education, mute & deaf, and Al-Nour Institution (under Ministry of Education and the General Presidency for Girls’ Education), Rehabilitation Care Hospital and primary healthcare centers (under Ministry of Health) in Al-Madina. It was agreed to approve such authorities as authentic data sources. According to those data sources, disability cases among people aged (from 2 to 99 years) reached (3700 cases) of which (531 cases i.e. 14.4 %) have accommodation services, while (3169 cases i.e. 85.6%) are without accommodation services.
      •     Total number of disabled children (1583 cases) representing 42.8% of the gross total of disability cases, and of which (178 cases) were provided with accommodation services, while (1405cases) were not.
      •     The study shows that (1403 children) could benefit from the services rendered by the Association starting from birth till the age of 12 years.
      It is expected that this figure will increase by an average of (37 children) annually, provided that the center will be ready after 3 years.
      Recommendations:
      This study recommends establishing a rehabilitation center for children with disability in Al-Madina, where a 50.000 m⒉ area shall be allocated for this project accommodating the present requirements and any future expansions. The center should include the following:

      • Educational department providing services for all grades.
      • Medical department with an adequate number of support units.
      • Children accommodations with lodging facilities for limited periods.
      • Accommodations for various staff categories working in the Center.

Calibration and Adaptation of Denver Modified Questionnaire for Categorizing the Development of Saudi Children in Al-Madina Area
  1. Primary Investigator: Dr. Salih bin Saad Al-Ansari
  2. Co-Investigator:
  3. Source of Support: Prince Salman Center for Disability Research
  4. Project Aims:  
  5. Duration: 12 months
  6. Start Date: 19/12/1993
  7. Completion Date: 18/12/1994
  8. Summary:
  9. Research Outcome:
    1. Results:
      This study was conducted in 1415H on (576) children and the results were as follows:
    • The questionnaire could be applied to detect development and disability problems among children from birth till the age of 6 years taking notice of the following:
      • All questionnaire items are statistically related to the child’s age.
      • The importance of training on proper filling of the questionnaire and ongoing evaluation of its users.
      • Questionnaire calibration for other environments needs similar modifications.
    • Developmental abilities are connected with the mother’s level of education.
      Recommendations:
        • Survey programs should target children less than 6 years of age.
        • Establishment of a referral clinic to carry out reassessment of suspect disability cases.
        • Staff working on the questionnaire shall be trained before the commencement of the categorization of development program and during the course of the program.
        • Awareness about normal development of the child, its phases, fundamentals and factors affecting it shall be extended to mothers.
        • The importance of providing early education for children, especially in rural areas.
        • The importance of improving the standards of living at the countryside to become similar to those of the cities.
        • Hospitals should be obliged to carry out tests for early detection and identification of disabilities.

Treatment of Myosclerosis in Children with Disability Using Botulinium Toxin
  • Primary Investigator: Dr. Talaat bin Hamza Al-Waznah
  • Co-Investigator:
  • Source of Support: Disabled Children Association / Prince Salman Center for Disability Research.
  • Project Aims:   
  • Duration: 10 months
  • Start Date: 3/3/1995
  • Completion Date: 2/1/1996
  • Summary:
  • Research Outcome:
    1. Recommendations:
        • This drug was proved to reduce the myosclerosis and improve the functional performance of the patient.
        • The drug has no side effects.
        • It was shown that the patient’s response to the drug is directly proportional to his mental abilities and inversely proportional to the patient’s age and the number of the stiffened muscle groups.

The National Research Project to Study Children’s Disability in the Kingdom of Saudi Arabia
  1. Primary Investigator: Dr. Mohsen bin Ali Fares Al-Hazmi.
  2. Co-Investigator: 4
    1. No. of Consultants: 10
    2. Field Research Team:
      a) Coordinators for the supervising and follow-up committees (575 researchers).
      b) Number of people working in the field research team in different regions of the Kingdom:  (575 researchers)
  3. Source of Support: King Abdulaziz City for Sciences and Technology / Prince Sultan bin Abdulaziz Aal-Saud Foundation / “SABEC” Company / Disabled Children Association.
  4. Project Aims:   
  5. Duration: 36 months
  6. Start Date: 14/10/1996
  7. Completion Date: 13/10/1999
  8. Summary:
  9. Research Outcome:

    Results of studies conducted, through this research, showed that the number of children with disabilities was (3838) out of the research sample of (60630 children), in different regions of the Kingdom, which amounts to 6.33%.  The number of disabilities recorded among those children was 6943, as some children have more than one disability.  The study covered demographical as well as epidemiological aspects, causes of disabilities and their relation to congenital and environmental factors, identification of social and economical factors, as well as rehabilitative, preventive and therapeutic aspects and services rendered to people with disability. This underscores the necessity of benefiting from the coordinative and integrative efforts in the field of disability.
    We summarize some major aspects related to the significance of the National Research for Disability in Kingdom of Saudi Arabia as follows:
    First: Demographic factors of the research sample throughout the Kingdom:
    1.  Disability rate is 53.2% among male children and 46.8% among female children.
    2.  24.8% of children live in villages, rural centers and hamlets, while the rest are inhabitants of cities and urban areas.
    3.  57.7% of children live in houses built of wood or clay bricks where they are more liable to infectious diseases resulting in disabilities, while 42.3 % live in villas and apartments.
    4.  48.1% of children live in houses with an average of 4 or more children per room. This crowding facilitates spread of infectious diseases causing disabilities among children of the same family.
    5.  46.2% of mothers were non-educated and so, it is necessary to expand adult education classes to promote maternal awareness towards childcare and prevention of diseases that cause disability, especially in rural areas.
    6.  58.1% of parents were 1st & 2nd class relatives, which represents one of the main causes of disabilities especially the congenital ones. There was a direct proportional relation between the class of parental relativity and the occurrence rate of disability.
    7.  22% of the children had an age gap difference of less than one year from their siblings, resulting in shorter breast-feeding periods and inadequate health care.
    8.  Kingdom’s wide, physician assisted deliveries amounted to 78.3%, while midwife assisted deliveries were 13% and those assisted by nurses were 8.7%. Physician assisted deliveries varied from 52% in the countryside to 90 % in cities.

    These indicators emphasize the necessity of promoting maternal awareness in the countryside as to the place of delivery and who should supervise it in order to ensure maternal and neonatal safety.
    Second: Postnatal services rendered to children:

    1.  At the regional level, 2.4% of neonates were admitted to NICUs. Only 0.4% was from the countryside compared to 3% from cities.
    2. The lowest vaccination rate in all regions was that of anti tuberculosis, which reached 68.5 %. The vaccination rate varied from 52% in cities to 92 % in hamlets.
    3. The highest vaccination rate in all regions was that of poliomyelitis and DPT vaccine which reached 97.6% and 96.8% respectively. The vaccination rate varied from 99% in hamlets to 96% in provinces.

    These indicators show that the vaccination rate against infectious diseases causing disabilities was higher in hamlets than in villages, countryside, provinces and cities. This is attributed to increasing interest and emphasis of health authorities in providing healthcare and vaccination services and ensuring their access to all villages and remote areas.
    Third:  Indicators of services provided to mothers and children according to the nature of the regions:

    1. The lowest rate of maternal vaccination against Rubella was in Jazan villages (12%).
    2. The lowest rate of maternal vaccination against Tetanus was in Aseer area (21 %).
    3. The lowest rate of vitamin and iron dispensing to pregnant women was in Hail area.
    4. The lowest in-hospital deliveries were in Qaseem villages (46%).
    5.  The highest rate of midwife-assisted deliveries was in the hamlets of eastern region (96.4 %).
    6. The highest rate of NICU admissions was in AL-Jouf area (8-10%).
    7.  Increased rate of receiving anti-hepatitis vaccination, in general.  
    8.  30.9% of children’s families were of law social/economical level, which had a negative impact on the children’s health, as well as social, psychological and recreational care levels.

    Fourth:  Services provided in the field of maternal & child’s care:
    A- Maternal services during pregnancy:

    1. The rate of maternal vaccination against Rubella reached 58.4% all over the Kingdom. The rate of those who received vaccination against Rubella varied from 31% in hamlets to 73% in the cities.
    2. The rate of maternal vaccination against Tetanus reached 64.1% all over the Kingdom. The rate of those who received vaccination against Tetanus varied from 83% in hamlets to 58 % in the cities.
    3. The rate of those who received vitamins and iron during pregnancy was 35.9%. The rate of those who received vitamins and iron during pregnancy varied from 66% in hamlets to 23 % in cities.
    4. The rate of those who received medical care during pregnancy was 75.3 %. The rates of maternal medical care provision during pregnancy varied from 84% in hamlets to 71% in villages. 
    5. Those indicators underscore the necessity of increasing the health care levels, as well as vaccination of mothers during pregnancy in villages, countryside, provinces and cities, expanding and improving these services and identifying authorities providing such services to ensure that they reach all categories in all areas.

    B- Maternal services rendered during delivery

    1. Rate of in-hospital deliveries reached 89.7%, and 2.9% in primary health care centers, while home deliveries reached 7.4%. Rate of the in-hospital deliveries varied from 66% in hamlets to 95% in cities.
    2. Generally, children’s vaccination rate has increased in the hamlets.
    3. The lowest vaccination rate among children was that of anti-tuberculosis (in Aseer villages 15.8%)

    Fifth:  Indicators of services provided to children with disabilities:

    1. The most prominent services were the medical services, especially those provided for acute cases, followed by educational services.
    2. Psychological, housing, recreational and vocational services, and compensatory devices were limited to acute and moderate cases.
    3. Medical, educational and social services along with the financial support were provided to all regions (hamlets, villages, provinces, cities) at variable degrees. 
    4.  Psychological, housing, recreational and vocational services, as well as physiotherapy and compensatory devices are almost absent in hamlets and rural areas.
    5.  Severely handicapped cases were receiving all services.

    Research results had also included some recommendations on care, rehabilitation and preventive procedures to bring down disability rates and train human resources, encourage research in the field of disability and participate in laying out suitable and applicable plans in this field.

 

The Provision Code for Persons with Disabilities in Kingdom of Saudi Arabia
  1. Primary Investigator: H.E. Dr. Motleb bin Abdullah Al-Nafissa
  2. Co-Investigator:
  3. Source of Support: Sultan bin Abdulaziz Charity Establishment
  4. Project Aims:   
  5. Duration: 14 months
  6. Start Date: 23/6/1997
  7. Completion Date: 22/8/1998
  8. Summary:
  9. Research Outcome:

    The work team was assigned to prepare the Provision Code for Persons with Disabilities (main code in 13 articles). The specialized groups prepared the complementary by-laws as well as detailed engineering, health, social, recreational, legal, informational and employment aspects, besides having those approved by the committee and categorized at the Data Sources Department in the center.

    The Provision Code for Persons with Disabilities “original” was submitted to the Ministry of Labor and Social Affairs. The Shura Council discussed the constitution and approved it in the month of Rabea Al-Thani 1421. Then it was submitted to the High Royal Office.

 

Information Services Directed to Persons with Disabilities in the Kingdom of Saudi Arabia (Theoretical and Practical Study)
  1. Primary Investigator: Dr. Salem bin Mohammad Salim
  2. Co-Investigator:
  3. Support Source: Sheikh Mohammad bin Abdulwahab Al-Abdulwahab
  4. Project Aims:   
  5. Duration: 12 months
  6. Start Date: 13/11/1999
  7. Completion Date: 12/11/2000
  8. Summary:
  9. Research Outcome:
    1. Generally, there is lack of care in providing information services for persons with visual disabilities in the libraries (public libraries, university libraries, and research libraries) spread all over cities and provinces of the Kingdom. Field survey proved that some libraries that participated in the study include some books printed in Braille method, beside some tapes and magnifiers used for reading.
    2. As to specialized libraries for the blind (operating under institutes for blind boys), it was proved that they are providing some services directed to targeted categories especially in-library study, book borrowing and answering reference questions.
    3. Most beneficiaries who had participated in the current study community preferred subjects printed in Braille’s method.  Tapes came second, followed by subjects printed the normal way and next to them were models (maquettes) and at last, the use of subjects printed in capital letters.
    4. It was proved that the majority are satisfied with services provided by specialized libraries to those blind people, while few of the beneficiaries are not satisfied. Another minority did not show their attitude in this respect.
    5. It was apparent that there are big variations among libraries of blinds as to the available devices such as audio recorders next, as to quantity, are typewriters available for use by beneficiaries.  Magnifying lenses, personal computers and other devices were equally divided between libraries.
    6. Institutions of libraries that participated in the survey had no special print shops to produce books in Braille method except one institute i.e. Al-Nour Institute in Riyadh.

Disability Issues In The Saudi Press
  1. Primary Investigator: Dr. Abdulaziz bin Ali Al-Miqwashi
  2. Co-Investigator:
  3. Source of Support: Sheikh Mohamed bin Omar Qassim Al-Eissae
  4. Project Aims:   
  5. Duration: 6 months
  6. Start Date: 30/11/1998
  7. Completion Date: 29/5/1999
  8. Summary:
  9. Research Outcome:
    Mass media with its different types represents one of the most important sources on which the public depends, in order to be aware and updated with events and life affairs. Public dependence on the media is constantly increasing due to the mounting interest in events and current affairs, along with the consequent developments, which made some of the media available for the various categories of the public. For this reason, some of the mass media became the main resources of information, on which the public builds its opinions and thoughts and forms its trends and conducts depending on it.
    The audio, video and readable means of mass media contribute through various coverage of different issues and events to form public opinion and influence it.  It became the frame that people depend on in finalizing their viewpoints on current issues and problems. It also works on their education and enlightenment in different aspects of their life especially those related to health.
    Disability is considered as a social/health issue; some causes of which could be avoided and its psychological and social impacts on the person with disability and his surrounding family could be reduced. Because mass media plays a big role in forming public opinion on disability issues, causes and ways of their prevention in local press, it needs good deal of consideration and care.
    Press efforts, which mass media is supposed to carry out in serving disability issues, could be enlisted under what is called “awareness efforts” which seek to familiarize different classes of society with the disability causes and ways of prevention, besides the explanation of the means and approaches that reduce the disability’s negative impacts on both individuals and society. Therefore, this study sought to determine how the Saudi press handled the disability issue through realizing the technical approaches used by the Saudi press to cover disability.
    The study had concluded many recommendations, which the investigator expects that they will develop the quantity and quality of the disability coverage. Some other recommendations were reached, and hopefully, are expected to help the mass media and other authorities specialized in disability in developing mass media and its role in serving the disability issues.

Epidemiological Clinical Study About the Disability Which Occurs After Stroke
  1. Primary Investigator: Dr. Abdulrahman Yousef Al Tahan 
  2. Co-Investigator: Dr. Sulaiman Al-Shammary, Dr. Talaat Al-Waznah, Dr. Saad Al-Rajeh, Dr. Faeq Al-Khozeiki.
  3. Institution: KSU
  4. Project Aims: This study aims at determining risk factors, in addition to the factors influencing the rate of long term disability and consequently, if contributing in future planning all over the country, to help to prevent cerebral palsy and to improve the life of those suffering from it.
  5. Duration: 26 months
  6. Start Date: 1/10/2001
  7. Completion Date: 22/11/2003
  8. Summary:

    Cerebral palsy is considered as an important reason of death and long-term disability worldwide. It is expected that the relatively law incidence of cerebral palsy in the Kingdom of Saudi Arabia, will increase due to the expected increase in life rates and life style changes in Saudi society including those habits related to diet.  Preventive procedures directed towards risk factors may support in reducing occurrence of cerebral palsy and consequent disability rates.

    This study aims at determining risk factors, in addition to the factors influencing the rate of long term disability and consequently, contribute in future planning all over the country to help preventing cerebral palsy and improving the life of those suffering from it.

  9. Research Outcome:

    Stroke in Saudi population, causes substantial disabilities in an elderly population that is cared for mainly by their families. Apart from its significant impact on the professional and social status of the patients, it creates a major load on their families. This underscores the importance of establishing home visit teams, and strengthening other social support measures.

    DM and HPT are the predominant risk factors of stroke, which reconfirm the urgent need for optimizing relevant prophylactic and management measures.

    The lack of physical activity is a prominent negative habit in this group, and there is a   pressing need to educate the public and especially this group on its importance.

    The use of Aspirin and thrombolytic agents in the acute management of stroke is deficient, which underscores the importance of establishing stroke units & promoting educational program among involved medical staff.