Attitudes Towards Down's Syndrome

Done by :

Fakhra A. Al-Kwaiti, Shereena K. Al-Mazrouei, Fareeda I. Al-Hosani, Fatma R. Al-Shamsi, Aisha S. Al-Swaidi, Asmaa E. Al-Mannaie, Rowaya R. Al-Mazrooei

Abstract:

Background: Down's Syndrome is a genetic condition caused by extra genetic material from the 21st chromosomes. It is a common disorder through the world.
Aim: the aim of our study is to have a clear idea about the attitudes of the UAE society towards people with Down's Syndrome.
Methods: Data was collected from a sample of 280 individuals that are from different Age groups and different educational levels. Questionnaires and semi structured interviews were followed to gain information.
Results: An over all result was that females acceptance to people with Down's Syndrome is more than males. However, nearly all of the females refused the idea of marrying them.
Recommendation: Introducing the topic of Down's Syndrome in the different media devices will contribute in correcting the idea about people with Down's Syndrome. Also, more specialized centers should be available to help those individuals.

Introduction:

Down's Syndrome is a genetic condition caused by extra genetic material (genes) from the 21st chromosome. Till now its not known what causes the extra 21st chromosome, but it's known that the extra 21st chromosome causes an extra dose of some proteins. Those proteins cause the typical features of Down's Syndrome. There are no specific causes that have been identified and proven. There are three types of Down's Syndrome: Trisomy 21, translocation and mosaicism. In the usual circumstances, the chances depend upon the age of the mother. The odds of having a child with Down's Syndrome (DS) at age 35 are approximately 1 in 350. Under age 25, the odds are about 1 in 1400 and at age 40 the odds are about 1 in 100. (1)
The society's attitudes and beliefs in this subject are variable. Previous studies have covered some areas of people's attitudes towards DS in many parts of the world, but they are very few. With regard to the UAE society's attitudes and beliefs towards DS, information was incomplete. We feel that the information gained from this study will be of help to the Ministry of Health with regard to their focus upon the needs of the community.

Method:

The study took place in the hospitals and schools of Al-Ain, Abu-Dhabi, Sharjah, Ajman and Ras-Al-Khaimah. The respondent's age varied from 13 to 68 years old.
Participants in this study were predominantly UAE nationals (70.4% of the total); the rest were non-nationals who live in the UAE. 74.3% of the participants were females. In addition, they were from different educational levels (1.1% less than primary, 10.7% primary, 22.9% preparatory, 14.3% secondary and 51.1% university).
Data was collected using questionnaire that contained 25 closed questions and two open questions. The questionnaire included 6 questions about the subject's personal information, 3 back ground questions, 5 questions about the attitudes towards people with Down's Syndrome, 8 questions about the care provided to people with Down's Syndrome and three questions about the factors associated with Down's Syndrome. Total 300 questionnaires were distributed and 280 out of 290 were returned completed.

Analysis of the data was done using SPSS program.

Results:

A total of 300 questionnaires were distributed. Out of the 290 questionnaires which were returned only 280 were used. It was noticed that (11.4%) of the total sample have a family member with Down's Syndrome (DS). Regarding table 1, the majority thinks that people with DS can eat without help, read, write and play simple games. In addition, (45.7%) of the participants think that children with DS won't be able to play like other normal children, while (29.6%) of the participants disagree with them. 40.4% of the participants think that a family would accept a child with DS. 55% believes that people with DS can't plan their future. One of our major findings was about marrying a person with DS, it shows that (78.6%) refused. In the matter of care (table 3) most people agreed on that people with DS should go to school, join teams, perform work and participate in the community. Most of the participants (70%) see that the society causes depression to people with DS. In addition, (73.9%) trust buying from people with DS. Table 4 shows clearly that the people have correct ideas about the factors associated with DS. It is believed that people with DS have more psychological problems (52.1%). Shaking hands with DS people was acceptable to a large percentage of the society people (88.6%) (Table 2). With regard to the educational level and shaking hands we found out that the majority of those of a preparatory school level refused to shake hands with DS people (Fig. 1). There was an agreement among the different groups that DS people would die earlier, (33.6%) chose yes, (33.9%) chose no whereas the rest (32.5%) chose the answer of not sure (Table 3). Most of the results indicated the existence of social stigma concerning Down's Syndrome (DS). From the results of our project we almost had a clear idea about people's beliefs concerning Down's Syndrome. This may emphasis that educational programs would help the community to get a better understanding of this problem.

Discussion:

Our study set out to show what attitudes the society has towards people with Down's Syndrome (DS). This will help in determining what should be done in order to integrate and to put them in a more advantageous position in society. Our respondents were mostly females (74.3%). The results showed that 146 (52.1%) out of the sample think that DS patients have more psychological problems. People with university educational level mostly represent this percentage, on the other hand there are almost equal percentages of people who don't think that people with DS have more psychological problems and who are reluctant.

In addition, as the educational level increases, the idea of more psychological problems increases. Moreover, there were nearly equal percentages of those who agreed (33.6%) and disagreed (33.9%) about the idea of that a DS person would die earlier. This could be a result of a previous experience with disease and death and may also be due to the thought that a person who is carrying a disease all his life will die early. Thus, the findings support the idea that there still are a few mistaken beliefs about DS. The results showed that 40.4% of the people with a university level of education think that a family would accept the presence of a DS child, while the remaining 60% which contained people from different educational levels (secondary, preparatory, primary) would refuse to accept a DS person and some were not sure. Those who would refuse acceptance thought that both a DS child and his family would face a lot of problems. A majority of (88.6%) university level educated people would shake hands with DS people. However, this was not the case with preparatory level educated people. This maybe due to their ideas that Down's Syndrome people are unpredictable and may infect them with the disease. However, these ideas need to be corrected in order to allow DS people to play a useful role in society. The study suggests that the community is aware of these individuals and it has a neutral to positive attitude towards them. Most of the participants agreed that people with DS are capable of performing simple work such as reading, writing and playing simple games. They also agreed on the participation of people with DS in society. However, they refused the idea of marrying a person with DS and they think that they are not able to plan their future. Which enforces the existence of a social distance towards people with DS. It is greatly recommended thfurther studies must be carried out to know what facilities are available to help people with Down's Syndrome.

Conclusion:

The present study shows that many people in the UAE have a positive attitude towards Down's Syndrome people and think that people with DS can some how perform in life similar to normal people. On the other hand there are still people who believe that any person with DS might have a psychological disorder and they are afraid of joining, and working with them. Moreover, most of them (78.6%) refused to marry a person with DS and (55%) think that people with DS can't plan their future. In addition, it was noticed that the attitude of females is more positive than males. The results also show that there is a need for more specialized care centers that can offer a good care for people with DS and teach them to be effective individuals in society and improve their life. Thus, it is recommended that further researches must be carried out in order to have a clear idea about the state of DS people in every Emirate in the UAE, and help them to fit and cope with the community.

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