Parental Worries of Down Syndrome Children in Iran

Sahel Hemmati; Nasrin Amiri; Asghar Dadkhah

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Sahel Hemmati, Nasrin Amiri, Asghar Dadkhah.

University of Social welfare and Rehabilitation, Iran.

ADDRESS FOR CORRESPONDENCE
Asghar dadkhah, PhD. University of welfare and Rehabilitation, Evin, kudakyar ave., Tehran 19834, Iran.

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Abstract

How children get on with life is one main source of worry - especially if the children have particular difficulties. Down syndrome (DS) is a condition in which extra genetic material causes delays in the way a child develops, and often leads to mental retardation. It affects 1 in every 800 babies born. Down syndrome is a person with recognizable physical characteristics and limited intellectual functioning due to an extra chromosome 21.

In Iranian culture, the family is the most significant element of Iranian culture & society. They relay on family connection for influence, power and security. Iranian society encountered fundamental changes in traditional structure in the last century. Values, attitudes and human development have changed the scenario. The aim of this study is to assess the kind of worries in parents with Down's syndrome children and ranking the importance of worries in Iranian cultures.

Keywords

Down syndrome, children, parents worries, Iranian culture

Introduction

All parents worry about their children - it's natural. How children get on at school is one main source of worry - especially if your child is unhappy or has particular difficulties. Parents everywhere worry about their children but exceptional children have difference. (Parker, 2005). Only a third of Down syndrome parents have excellent recourses with clear and consistent information to support of their child. (Eavosl C. H, Laind B and Dickson, 1996). Parents also worry about how they can meet the challenge posed by a child with special needs. There is a great deal of work involved in raising any child with a disability, and raising a child with Down syndrome is no difference. (Gunderson, 1995). Early interventions have the opportunity to be a resource and support for beyond their particular discipline to the families of the infants and young children with whom they work. (Roizen, 2003).

Although children with Down syndrome can be just as healthy as any other children, they can also have special medical problems. (Gunderson, 1995). Down syndrome child is still not fully accepted by parents and society and several factors such as the cultural level and economic status of the family, social mores and religious beliefs must be considered. (Latini, 2002). One of the most important problems in Down syndrome is communication problem. It is detected that regular teachings for reading help them in better language speaking. (Buckley, 1995). Most Down syndromes can live healthy lives with a healthy lifestyle. (Mcguire, 2000)

Child birth will be bring changes in the parents life (Gunderson 1995), it has also can change roles. In developmental field several aspects are important; they are skills in social, motor, language and intellectual domains. All of parents like their children pass them very well (Kaplan, 2003). Down syndrome has physical characteristic that is detectable from the birth, therefore from the first days parents are worried about them. What is wrong? Why us? What is the cause for worries? And what has imbalanced their life? At first parents are in shock, a strong, almost warm feeling envelops every body in this situation (Gunderson, 1995).

Lack of acceptance starts when the nature of the condition is disclosed to the parents, and continues through the entire life of the individual (Latini, 2002). However, in 1964, Drillien and Wilkinson observed that an early and full explanation of the disease seems to make it easier for the parents to accept the diagnosis (Drillien, 1964). The majority of Down syndrome parents seem to prefer being told as soon as possible, with both parents present, in order to promote acceptance of their child in to the family and community (Sharp, 1992).

In a study by Eavosl (1996) regarding information about caregivers of Down syndrome, only a third of them realized; had excellent resources with clear and consistent information to support of their child. (Eavosl, 1996). Some Down syndrome parents realized past pathology in family is more important than having a child with Down syndrome (Bower, 1998).

What about Iran and Iranian parents? The family is the most significant element of Iranian culture and society. (Jalali; 2006). What about Iranian Down Syndrome parents? Are they different from other countries? What worries are the most in Iranian parents? In how many ways Iranian parents get information about their Down syndrome children? When Down syndrome is detected in early minutes of the birth, what is early intervention in Iran? What about social and supporting system about parents and their children? Are parents comfortable with them?

In this research, we will study the kind of worries in parents with Down syndrome children and also rank the importance of worries in Iranian cultures.

Methods & Materials

Participants: Sixty-one Down Syndrome children between 3 -18 years that are member in Iranian Down syndrome Society or studying in exceptional schools.

Tools: We designed questionnaires for three stages, and examined it. First, parents were requested to determine five major problems about their Down syndrome's child and then rate them from 1-20. In other stage, we invited 25 rehabilitation experts who were especially working with Down syndrome. They were speech therapists and occupational psychiatrist and a questionnaire with 36 items was made. They scored each child based on with family's knowledge and educational background. Their scores were based on little education, without education, well-educated. Then the same families were reassessed and they scored their problems based on these 36 items. (1 - 20). Rates were: 0 - 5 were equaled to without education, 5 - 10 were equaled to a little education and 15 - 20 were equaled to well educated. Children were divided into 4 groups depending on the age: Group 1 included children between 3 - 7 years, Group 2 had children between 7 - 11 years, Group 3 had children between 11-14 years and Group 4 had children between 14-17 years.

Results

Initial Parents' ideas about down syndromes problems in each group are shown in Table 1.

Table 1: Parental idea about problems in each group.

Age Group	Main Problem
3 - 7 years	Physical problems
7 - 14 years	communication, speech
11 - 14 years	speech, behavioral
14 - 18 years	social, behavioral

In table (2), the specialists viewpoint of Down syndrome problems are registered. All of above problems are having high rates. (19 - 20)

Table 2. Specialists' ideas about down syndromes problems

Problem	Rate + SD
Physical	19.83 + 2.51
Behavioral	19.81 + 2.4
Social	19.76 + 2.73
Education	19.12 + 2.03
Caring	19.01 + 2.63
Communication	19.78 + 3.17
Financial	19.54 + 3.22

In Table 3, the scores of worries and difficulties as reassessed by parents are depicted.

Table 3. Scoring of down syndromes problems by parents

Problem	Score
Caring, support, Vague future	20
Communication, Speech	19.87
Physical	19.87
Unemployment	19.85
Dependency Behaviour	19.75

Analysis of information showed that 23% families didn't know the rehabilitation center and their works, only 10 % had enough information, the other had known a little. Unfortunately, only two of the children were referred to rehabilitation clinic by pediatricians, most of parents were not given enough information and support from their pediatricians or gynecologists.

In supportive system, social security and employment are shown: 96 % of parents are worried about their children after themselves because there isn't any structural supportive system for Down syndrome. 66% of families had insurance for therapy, 34% didn't have it. 41% of families can cover their expenses, 28% have difficulties in it. 38% can cover educational expenses. 85% of families want to have enough information about their children. They need up-to-date information.

59% of parents were worried about their Down syndromes marriage.

Families stated that 75% of their down syndromes children have good relationship with other members of families. 76% haven't difficulties in primary self-care. 69% children can have do their schoolwork, 74% of them do not have any major problem with children's school. Young Down syndrome children have difficulties in social communications about 56%. Birth of Down syndrome and its effect were having studied in few sentences; Limitation in familial association; Going party with their special child; Feeling inferiority for bearing the special child.

51% of families didn't feel inferior and would bring all of their children to familial parties. 96% of parents know their special child as nice and lovely. 97% of Iranian families don't like institutes. They never have thought about it.

Parents believe their down syndrome's children with special education can live very well. They can live independent or semi dependent with well supportive system. Only in 10% of families there is marital conflict.

Discussion

In our research, the most problems in Iranian Down syndrome families are: At the birth most of them have physical problems that were major worries of their families, especially on the first years. Parents in this situation often are perplexed and worried for child's health. Most of Down syndrome has a high frequency of birth defects (Latini, 2002). Treatment and follow up of the medical concerns is expensive, when families have not health insurance, they must pay much for them. We detected unfortunately explanation of condition by professionals is very poor. Almost of families need a complete knowledge of the expression patterns of trisomy 21. Parents told there isn't a structural program and organizations for referral. In several countries from delivery room itself parents are referred to correct organization and programs (Gunderson, 1995)

In our research, parents believed their children have capacities for better life and with organized education they can work in the community and enjoy better of their life as also reported by Nadel. (Nadel, 1995)

One of the most important worry was for communicational and speech difficulties. To day there are many researches about communicational problems, the results are useful for parents and professionals (Kumin, 2003). All of them emphasized for early intervention that is detectable for communication. (Greenspan, 1998)

The behavioral and psychological difficulties appear in school and puberty years. Most of them haven't major problems with their parents, but social acceptance and their view are important in behavioral disturbance. Social opportunities can help them in building sense of self esteem, well-being and happiness. (Mcguire, 2000). Another parental worry was of social security and appropriate support for Down syndrome child, especially after parents died. Now in the world there are special programs and legal rights for Down syndrome persons (Gunderson, 1995) that must be implemented in this country too. Special education needs time and cost. Many of parents have difficulty with them. 96% of parents love their child and never want to leave them or make them live in institute. In other countries too it has been noticed. (Gundersen,1995-Latini,2002)

In summary with especial education to parents, preparing a structural program for families and professionals many of difficulties of families can be solved. Early intervention, special insurance helps in decreasing parents worries. Communicational problems, adjusting and behavioral difficulties, absence of appropriate social security are another Down syndrome parent's worries that need to correct by appropriate rights and legality.

It is important that society develop attitudes that will permit people with Down syndrome to participate in community life and to be accepted.

Compliance with Ethical Standards

Funding None

Conflict of Interest None

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