DOWN SYNDROME PARENTS' WORRIES ABOUT THEIR CHILDREN IN IRAN

Sahel Hemmati, MD; Nasrin Amiri, MD; Asghar Dadkhah, PhD. University of Social welfare and Rehabilitation, Iran Correspondence to: Asghar dadkhah, PhD. University of welfare and Rehabilitation, Evin, kudakyar ave., Tehran 19834, Iran. Email: asgaredu@uswr.ac.ir

INTRODUCTION

All parents worry about their children - it is 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 a difference. (Parker, 2005). Only a third of Down syndrome parents have excellent resources with clear and consistent information related to support of their child. (Eavosloc.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 different. (Gunderson, 1995). Early interventions have the opportunity to be a resource and support for parents 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). A Down syndrome child still is 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 the communication problem. It is detected that regular teaching of reading, helps them have better speaking ability. (Buckley, 1995). Most with Down syndrome can live healthy lives with a healthy lifestyle. (Mcguire, 2000)

Child birth will bring changes in the parents' life (Gunderson 1995) .It also can change roles. In the developmental field several aspects are important; they are skills in social, motor, language and intellectual domains. All of the parents like their children to pass them very well (Kaplan, 2003). Down syndrome has physical characteristics that are detectable from 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 into 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; they had excellent resources with clear and consistent information regarding support of their child. (Eavosl, 1996). Some Down syndrome parents realized that past pathology in the 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) - Values, attitudes and human development must be evaluated. (Jahangiri: 2006) What about Iranian Down Syndrome parents? Are they different from other countries? What worries Iranian parents the most? In how many ways do Iranian parents get information about their Down syndrome children? When Down syndrome is detected in the early minutes of the birth, what is early intervention in Iran? What about social and supporting system for parents and their children? Do parents like them and are they comfortable with them?

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

METHOD

Participants: TThey were childrem with Down Syndrome who are members of the Iranian Down syndrome Society, or studying in exceptional schools. They are 61 persons (31 girls and 30 boys). Their ages are between 3 - 18 years. At first there were 127 persons but in several stages, they drop out for non cooperation.

Tools: We designed questionairres for three stages, and examined them. At first, we requested of parents to determine five of their major problems about their Down syndrome's child, then rating them from 1 - 20.

In another stage, we invited 25 rehabilitation experts who were especially working with Down syndrome children. They were speech therapists, and occupational psychiatrists. All of them were invited to a work shop for two days. In additiona some of Down syndrome's parents were there, too.

In two days, they discussed the major problems in Iranian Down syndrome children. At last a questionnairre with 36 items was devised. They scored it with the family's knowledge and education. Their scores were based on need for education: a little education, without education, well educated.

Then the same families participated again. They scored and wrote their problems in based 36 items. (1 - 20)

Unfortunately at this stage from 127 families, only 61 of them cooperated.

Process: After a workshop questionnaire with 36 items was valid with; adult psychiatrist, child psychiatrist and rehabilitation psychologist.

Rates were: 0 - 5 were equaled to without education, 5 - 10 were equaled to a little education and 15 - 20 were equaled to well educate. These information were given to special software statically, analysis was performed with SPSS.

Findings:
In Table (1) Down syndrome children were categorized into four groups.

In Table (2) parents' ideas about their children's problems were shown.

In Table (3) the specialists viewpoint of down syndrome problems are registered. All of above problems had high rates. (19 - 20)

The scores of worries and difficulties are in Table - 4:

Analysis of information showed that 23% of families didn't know the rehabilitation center and its work, and only 10% had enough information; the others knew little.
Unfortunately only two of the children had been referred to the rehabilitation clinic in pediatrics. Most parents had not been given enough information and support from their pediatricians or gynaecologists.

In a 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 children. 66% of families had insurance for therapy, 34% didn't have it. 41% of families can cover their Down syndrome expenses, 28% have difficulties. 38% can cover educational expenses, the other can't cover them well cover. 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 syndrome children in marriage.

Families stated: 75% of their Down syndrome children have good relationships with other members of the family. 76% have no difficulties in primary self care.

Families stated that 69% of their Down syndrome children have done their school work, 74% of them haven't any major problems with the children's school. Young Down syndrome children have difficulties in social communications, about 56%.

Birth of Down syndrome children, and its effects were studied in a few sentences:
Limitation in familial association
Going publicly with their special child
Feeling inferiority for bearing the special child

51% of families' have no feelings of inferiority, they bring all of their children to familial parties. 96% of parents fewel their special child is nice and lovely. 97% of Iranian families don't like institutes. They usually never have thought about it.

Parents believe their Down syndrome children, with special education, can live very well. They can live independent or semi dependent with a well supportive system. Only in 10% of births of Down syndrome is their marital conflicts.

DISCUSSION

In our research the most problems in Iranian Down syndrome families have been determined.
At the birth most of them have physical problems that are major worries of their families, especially in the first years. Parents in this situation often are perplexed and worried for their child's health. In the past research showed although, Down syndrome is determined from birth (Roizen, 2003) most Down syndrome children have a high frequency of birth defects. (Latini, 2002)

Treatment and follow up for the medical concerns is expensive, and when families do not have health insurance, they must pay much for them. It is a major problem for families without health insurance. In several countries depending on the specific program in each area and the child's needs, health programs start from birth on especial insurance. (Gunderson, 1995)

We detected unfortunately that explanation of the condition by professionals is very poor. Most families need a complete knowledge of the expression patterns of trisomy 21. Parents are told, there isn't a structural program and organizations for referral. In the past reports showed that health professional must tell the family about the special needs appropriately' from the first days (Sharp, 1992). In several countries from the delivery room. parents were referred to the correct organization and programs (Gunderson, 1995)

In our research parents believed their children have the capacity for a better life and with organized education they can work in the community and enjoy their life, although initially parents have some worries about their Down children (Gunderson, 1995). But in the years after it Down syndrome parents believed their children had capacities especially in some fields. (Nadel, 1995)

One of the biggest worries for parents of Down syndrome children is communication and speech difficulties. They need a correct and continuous program. We showed that from preschool to adolescence they need specific attention. Today there is much researches on communication problems, and the results are useful for parents and professionals (Kumin, 2003). All of them emphasized early intervention for communication problems. (Greenspan, 1998)

The behavioural and psychological difficulties can shown in school and puberty years. Most do not have major problems with their parents, but social acceptance and their view are important in behavioral disturbance. In the past research pointed at difficulties in making a specific diagnosis in Down syndrome (Pary, 1993). Social opportunities can help them for sense of self -esteem, wellbeing and happiness. (Mcguire, 2000)

Another parental worry, was concern about social security and appropriate support for Down syndrome children, especially after the parents have died. Now in the world there are special programs and legal rights for Down syndrome persons (Gunderson, 1995), that must be delivered in our country, too.

Special education needs involve time and cost. Many parents have difficulty with these aspect, so that pre- school, school and rehabilitation programs need time and costs to be coverd, ifnot developmental delay may ensue. (Cohn, 2002)

With all of problems and the many worries of Down syndromes parents, 96% of them love their child and never want to leave them or leave them in an institute. Research in other countries detected the same love for Down syndrome children and parents enjoy living with them. This is a basic rule in their parents.(Gundersen,1995- Latini ,2002)

In summary it was shown that although distinct physical characteristics are in Down syndrome children, generally they are more similar to the average person in the community than they are different. With special education for parents, by preparing a structural program for families and professionals many of difficulties may be solved spontaneously. Early intervention must be noticed, special insurance is needed to decrease parents worries. Communicational problems, adjusting and behavioral difficulties, absence of appropriate social security are other Down syndrome parents' worries that need to corrected by appropriate rights and legal.
It is important that society develops attitudes that will permit people with Down syndrome to participate in community life and to be accepted.

RESULTS:
In our research, that is detected:
Education given to the Down syndrome children's parents from birth, and developing Down syndrome organizations and specific clinics is essential. Books, pamphlets and other information must be prepared for professionals and caregivers.
Down syndrome with some of disabilities is accepted in their families, but appropriate support, social security and legal rights must be especially noticed. If they have especial health program and support, social has humanizing rights.
Poor communication, UN clear future, no vocation is the other parents worries. Appropriate vocation and socializing is necessary for them.
When accorded their rights and treated with dignity, a person with Down syndrome will, in turn, provides society with a most valuable humanizing influence.

REFERENCES

Bower, A; Chant, D; ( 1998); Hardiness in families with and without a child with Down syndrome? Down syndrome research and practice, 1998, 5 (2), p: 71 - 77

Buckley, Sue, (1995); Living & learning in the community, Teaching children with Down syndrome to read and write, 1ed, USA, Nadelolynn, 1995, p: 158 - 169

Cohn, WI, (2002); Down syndrome: Visions for the 21st century, Willey liss, 2002

Drilliex, CM, Willkinson, EM, (1964); Mongolism, when should parents be told, BR.Med.J, 1964; 2; p: 1306 - 7

Eavosl, C.H, Laind.B&Dickson (1996) ; Raising a child with Down syndrome, Parents evaluation of health information and support, Down syndrome research and practice, 1996, 4 (2); p: 65 -96

Grenspan, S, Sweider, (1998); the child with special needs; Encouraging intellectual and emotional growth, 1ed, Preseus press, 1998

Gunderson, Karen stray, (1995), Adjusting to your new baby, Babies with Down syndrome, 2 ed, USA, Woodbine House, 1995, p: 37 - 63

Gunderson, Karen stray, (1995), Family life with your baby, Babies with Down syndrome, 2ed, USA, Woodbine House ,1995, p: 121 - 151

Gunderson, Karen stray, (1995), Legal Rights and Hurdless, Babies with Down syndrome, 2ed, USA, Woodbine House, 1995, p: 223 - 265

Gunderson, Karen stray, (1995), Medical concerns and Treatments, Babies with Down syndrome, 2ed, USA, Woodbine House, 1995, p: 63 - 95

Gunderson, Karen stray, (1995), Teaching your baby with Down syndrome, An introduction to early intervention , Babies with Down syndrome, 2ed, USA, Wood bine House, 1995, p: 181 - 190

Jahangire & coworkers, (2006), Value orientation and relationship to socio - economic indicators of human development in Iran, Sociation Today. V (4), N (1), Spring2006, ISSN; 1542 - 6300

Jalali, (2006), Iranian families, Rozaneh magazine, July - Aug, 2006

Kaplan & Sadocks, Benjamin James, Virginia Alcott, (2003), Child Psychiatry, Assessment, examination and psychological testing, Synopsis of Psychiatry, 9ed, USA, Lipincott Williams & Wilkins, 2003, p: 1151 - 1152

Kumin Libby, (2003), early communication skills for children with Down syndrome, 1 Ed, Woodbine House, 2003

Latini, Giuseppe, (2002), the joy of having a child with Down syndrome, 2002, 91 (12): 1291 - 3, www.He.Net/Alton/web/cs/down syndrome/latini.html/
McGuire, Dennis (2000), Promoting Health in adults with Down syndrome, 2002, www.alton web.Com/cs/Downsyndrome/declinepary.html

Nadel, Lynn, (1995), Down syndrome living and learning in the community 1ed, John willey &sons, 1995

Parker, Steven, (2005), Down syndrome, Developmental & Behavioral pediatrics, Lipincot Williams &Wilkins, 2005, p: 167 -168

Pary, Robert J, (1993), Down syndrome and aging, Psychiatrics disorders in adults with Down syndrome, The habilitative mental health care newsletter, 1993,Vol;12, p :26 - 7

Roizen, Nancy J, (2003), The early intervention and the medical problems of the child with Down syndrome, Infants and young children, Jan - March 2003 .vol ( 16 ), Iss, p :88 - 9