Examining the biological, psychological, and social characteristics of parents of individuals with Down syndrome: a case study of Sarikhani Special School

Introduction

Undoubtedly, having a healthy child from biological, psychological, and social perspectives has always been one of humanity’s most important goals. Throughout history, people have taken various measures to achieve this objective. Exceptional children face extensive developmental challenges in multiple areas (Golchobi Firozja et al. 2019; Kakabraee et al. 2013; Nazari et al. 2013; Farran 2008; Allison and Strydom 2009; Begum and Blacher 2011; Varsamis and Agaliotis 2011; Houwen et al. 2014). Having an exceptional child in a family affects intra-family relationships, the family’s economic situation, lifestyle, family planning, social life, and their expectations for the future (Harden 2005).
Down syndrome, also known as trisomy 21, is a genetic condition caused by the presence of an extra whole or partial chromosome 21. This syndrome was first described by John Langdon Down, a British physician, in 1866, and in 1959, Jérôme Lejeune identified it as trisomy 21. Down syndrome can be diagnosed prenatally through amniocentesis, which carries risks of fetal injury or miscarriage, or at birth (Guijarro et al. 2009; Hawn et al. 2009). Down syndrome is a chromosomal disorder characterized by an extra copy of chromosome 21. Sometimes, this condition results from a full extra copy of chromosome 21, known as trisomy 21, while in other cases, only part of chromosome 21 is present, referred to as translocation 21 (Gonzalez-Aguero et al. 2010). The impact and type of symptoms vary significantly among individuals with Down syndrome, depending on genetic history and chance. The global prevalence of Down syndrome is approximately 1 in 650-1,000 live births. This genetic disorder is often accompanied by neurological deficits, including cognitive impairments, epilepsy, seizures, systemic neurocognitive disorders, and an increased risk of early onset of dementia, particularly Alzheimer’s disease (Sadeghi et al. 2013).
The birth of children with biological and cognitive impairments, often associated with physical, sensory-motor, and intellectual disabilities, can be linked to consanguineous marriages and hereditary factors, which are significant contributors to exceptional conditions (Ashori et al. 2021).
Biological characteristics include parental marriage type, consanguineous marriage, maternal age at marriage, maternal age during pregnancy, parental health, and genetic counseling. Cognitive characteristics refer to awareness of the needs of exceptional children before and after birth, knowledge of disability-causing factors, and preventive measures to avoid future births of children with disabilities.
Psychosocial characteristics encompass factors such as parental relationships before and after childbirth, parental marriage process, and maternal pregnancy conditions. Parents who have one of the six types of kinship-based marriages, including father-side cousin marriages, mother-side cousin marriages, and double or multiple kinship ties, are considered to have consanguineous marriages (Afrooz 2023).
Given these factors, it is evident that biological, cognitive, psychological, and family-related studies on individuals with Down syndrome are essential. Thus, the present study aimed to examine the biological, psychological, and social characteristics of parents of individuals with Down syndrome, focusing on a case study of Sarikhani Special School.

Material and methods

This study employed a descriptive-analytical research design. The statistical population consisted of all parents of children with Down syndrome enrolled at Sarikhani Special School in Tehran in 2024, totaling 15 families. Due to the limited sample size, a convenience sampling method was used for participant selection.

Questionnaire of biological, psychological and social characteristics

The primary research instrument was the Biological, Psychological, and Social Characteristics Questionnaire, originally developed by Dr. Afrooz in 2004 to assess the biological, cognitive, and psychosocial characteristics of parents with children diagnosed with Down syndrome. This questionnaire has been modified and adapted for various studies on childhood psychological disorders (Afrooz 2010; Hajiesfandairy et al. 2010; Khazaie 2005). For this research, its original structure was preserved, with slight modifications to make it more suitable for parents of exceptional children. The questionnaire consists of three main sections. The first section gathers demographic information about the child, including gender, age, birthdate, birthplace, type of disorder, birth order, place of residence, birth weight, and medical history. The second section contains 12 questions focused on biological characteristics of parents, such as maternal age, maternal age at marriage, maternal age at the birth of the exceptional child, maternal birthplace, and maternal medical history before pregnancy. The third section includes 15 questions assessing cognitive and psychosocial aspects of parents, covering factors such as maternal emotional and psychological state before pregnancy, education level, income level, parental willingness for childbearing, history of psychological disorders before pregnancy, parental relationship before the child’s birth, history of migration, consanguineous marriage, and the presence of another disabled individual among relatives.
Since the questionnaire evaluates qualitative demographic and biological variables, each question is rated on a qualitative scale, ranging from best to worst, and the responses are analyzed by comparing individual results with those of other participants (Afrooz 2014). The internal consistency of the questionnaire was measured using Cronbach’s  coefficient, yielding a reliability score of 0.85. Its face validity and construct validity were confirmed through the Kuder-Richardson 20 test, with a coefficient of 0.88 (Mohammadi et al. 2018). Additionally, in a study by Zeidabadinejad et al. (2019), the test-retest reliability was reported between 0.93 and 0.95, confirming the high reliability and consistency of the instrument. The third section of the questionnaire consists of 15 questions assessing the cognitive and psychosocial status of parents. It includes items such as the emotional and psychological state of the mother before pregnancy, level of education, income level, parental desire for childbearing, history of psychological disorders or distress before pregnancy, parental relationship before the child’s birth, history of migration, consanguineous marriage, and the presence of another disabled individual among the child’s relatives. Given that this questionnaire examines qualitative demographic and biological variables, each question is assigned a qualitative rating scale from best to worst, and the analysis is conducted by comparing individuals’ responses with the results of others.
The internal consistency of the questionnaire was assessed using Cronbach’s  coefficient, which yielded a reliability score of 0.85. Its face validity and construct validity were confirmed through the Kuder-Richardson 20 test, with a coefficient of 0.88. Additionally, in a study conducted by Zeidabadinejad et al. (2019), the test-retest reliability of the questionnaire was reported to be between 0.93 and 0.95, indicating a high level of reliability and consistency.
For data analysis in the present study, SPSS software version 28 was used, employing descriptive statistical methods, including mean, standard deviation, and percentage analysis.

Results

In the present study, out of a total of 15 participants, the average age of mothers was 49.26 years, the average age of fathers was 56.33 years, and the average age of children with Down syndrome was 20.6 years. Additionally, the average birth weight of the children was 3.2 kg. The study shows that participants’ births were distributed across different seasons. Summer had the highest proportion, with 33.3% of births occurring during this time. Spring and fall each accounted for 26.7% of births, while winter had the lowest share, at 13.3%.
The blood groups of the children were varied. The most common blood group was A– (26.7%), followed by AB– (13.3%) and B+ (13.3%). Other blood groups, including O+, O–, A+, B–, and AB+, each accounted for 6.7% of the participants.

Biological characteristics of the child’s parents

Table 1 details the distribution of blood groups among the mothers, highlighting the dominant and less prevalent groups.
Among mothers, the majority (66.7%) had blood group A–. The next most common groups were B+ (13.3%) and B– (6.7%). Blood groups O+ and A+ were each found in 6.7% of mothers.
Table 2 presents the height distribution of mothers, segmented into three categories: less than 150 cm, 150-170 cm, and more than 170 cm.
The height of mothers was predominantly in the range of 150 to 170 cm, accounting for 86.7% of participants. A small percentage of mothers were shorter than 150 cm (6.7%) or taller than 170 cm (6.7%).

Psychological characteristics of the parents

Table 3 shows the levels of marital satisfaction among parents prior to pregnancy, categorized as average or high.
Table 3 shows the level of marital satisfaction in both parents before pregnancy. Most parents reported an average level of marital satisfaction before pregnancy (60%). A smaller proportion, 40%, rated their satisfaction level as high.

Cognitive characteristics of the parents

Table 4 outlines parents’ awareness levels regarding factors contributing to the birth of an exceptional child, ranging from very low to high.
Table 4 shows the parents’ level of awareness regarding the factors that contribute to the birth of an exceptional child. Regarding factors contributing to the birth of an exceptional child, 46.7% of parents demonstrated an average level of awareness. About 40% had a very low level of awareness, while 13.3% exhibited a high level of awareness.

Social characteristics of the parents

Table 5 explores the social relationship levels of parents before the child’s birth, rated as very low, low, and average.
Table 5 shows the level of parents’ interest in establishing social relationships before the birth of the studied child. The social relationships of parents before the birth of the child were assessed. 40% had average relationships, 13.3% had low relationships, and 6.7% had very low social relationships.
Table 6 shows the level of parents’ interest in establishing social relationships after the birth of the studied child. The social relationships of parents after the birth of the child were assessed. 53.3% had average relationships, 20% had low relationships, and 6.7% had very low social relationships.

Discussion and conclusions

This study aimed to examine the biological, psychological, and social characteristics of parents with children diagnosed with Down syndrome. The results showed that the average age of mothers was 49.26 years, the average age of fathers was 56.33 years, and the average age of children with Down syndrome was 20.6 years. The average birth weight of the children was 3.2 kg. Approximately 46% of mothers were 20 years old at the time of marriage, and most had non-consanguineous marriages. The educational level of parents was generally high. During pregnancy, only 35% of mothers with exceptional children were between the ages of 25 and 28. Additionally, regarding the psychological-emotional state of mothers of exceptional children during pregnancy, about 40% experienced depressive and anxious moods.
These findings are consistent with previous research. For example, Hejazi et al. reported that parents of exceptional children, compared to parents of typically developing children, had a higher history of illness, medication use, and migration during pregnancy, as well as a higher prevalence of consanguineous marriage, exceptional individuals among close relatives, and a history of psychological disorders and distress (Hejazi et al. 2009). Similarly, studies by Bener et al. (2007) and Mohajerani et al. (2018) identified a relationship between consanguineous marriage and the birth of exceptional children, such as intellectual disabilities, physical disabilities, and visual and auditory impairments. Additionally, research by Allik et al. showed that families with exceptional children often face poor economic conditions, experiencing frequent stressful events, poverty, and dysfunctional family dynamics (Allik et al. 2006).
This study also faced certain limitations and challenges, which should be taken into account when interpreting the results. For instance, the findings were limited to the sample size from Tehran and a single educational institution, making it difficult to generalize to broader populations. Moreover, the research process was time-consuming, and the questionnaire contained a large number of questions, which made data collection more demanding.
Additionally, the researchers faced significant challenges in explaining and justifying the study to mothers, particularly those with lower educational levels, which made administering and completing the questionnaires time-consuming and difficult.
Ultimately, it is recommended that future researchers consider the conditions and limitations of this study and conduct more comprehensive investigations with larger sample sizes from various regions and cities across Iran to gain a broader understanding of the role of biological and psychological factors in parents of exceptional children.

Acknowledgments

We would like to express our gratitude to all the participants of this study.

Disclosures

This research received no external funding.
This study was conducted in accordance with the ethical principles outlined in the Declaration of Helsinki. The study has been reviewed by the Ethics Review Committee of the university. All participants provided informed consent before participation. Participants’ privacy and confidentiality were safeguarded throughout the research process, and all data were collected and analyzed in compliance with ethical standards.
The authors report no conflicts of interest in this study.

References