Majid Omidi khankahdani; .Gholam Ali Afrooz; sogand ghasemzadeh; zahra Naghsh
Abstract
Abstract
Down syndrome is one of the most common chromosomal disorders, and the birth of a child with this syndrome can greatly impact the psychological state of parents and other family members. The purpose of this research was to study the factors that affect the quality of life in families of children ...
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Abstract
Down syndrome is one of the most common chromosomal disorders, and the birth of a child with this syndrome can greatly impact the psychological state of parents and other family members. The purpose of this research was to study the factors that affect the quality of life in families of children with Down syndrome, based on the lived experiences of both families and professionals in this area. The research method used was qualitative, and the study included 14 families and 15 professionals who shared their experiences through semi-structured interviews. Families were selected from the special education system, while professionals were selected via snowball sampling until saturation was reached. Data were coded in three stages (open, axial, and selective coding) and analyzed. The open codes consisted of 24 concepts, while axial codes included supports received, acceptance, coping skills, child performance (function), worry, and future security. The lived experiences of families and professionals showed that receiving support, accepting the child by families and community, family coping skills, child performance, and future security are all important factors for the quality of life in families of children with Down syndrome.
Extended Abstract
Introduction
Quality of life is a multidimensional concept that includes objective components such as health, education, income, security, as well as subjective components such as happiness, life satisfaction and meaning in life (Tripathi, Rai & Rompay-Bartels, 2021). The attitude towards individuals with disabilities has changed a lot over the years, as a result, families' role in supporting them has become increasingly important (Brown, 2010). Down syndrome is a common chromosomal disorder that affects people all over the world. People with Down syndrome often have emotional, psychological, physical, social, and economic impacts on their families. (Eckdahl, 2018; Afrooz, 2009) There have been some studies on the quality of life of families of children with Down syndrome, but more research is still needed in this area. The present study investigated the experience of families and professionals with children with Down syndrome to understand what factors impact the quality of life of the family of children with Down syndrome.
Research Question(s)
Based on the lived experiences of families and experts, what are the factors affecting the quality of life of families with children with Down syndrome?
Literature Review
Families of children with Down syndrome also report experiencing despair, having weak coping skills, and feeling a low level of life satisfaction. (Krueger et al, 2021). Families of children with Down syndrome report more well-being when they are able to participate in groups and social networks where they can receive support and information. (Roll & Bowers, 2019). The research results indicate the impact of perceived social support, child functioning, and socio-economic status on the quality of life of the families of those with Down syndrome (Rezende et al, 2016). Also, many research studies have explored the satisfaction of families in various aspects, including acceptance, commitment to family, and pleasure (Ajuwon, 2012), dissatisfaction with health care, low income, and high medical costs (Caples et al, 2018; Babaei et al, 2017). This exhaustion and burnout, which has different objective and subject aspects, are the result of physical characteristics and cognitive deficiencies, which are very important from parents' point of view (Marron, et al, 2013). In some cases, parents refer to the events as a valuable experience that has positively impacted their lives and has helped them to develop a new perspective on life and on their own personal development (Moreira et al, 2016; Skotko et al, 2011). According to parents of children with Down syndrome, the most important positive experiences involve influencing other parents, their child's achievements, acceptance, and social connection. Parents also experienced negative experiences such as medical challenges, lack of acceptance, lack of specialized support, and lack of support from government organizations (Farkas et al, 2019; Hillman et al, 2013; Siklos & Kerns, 2006).
Methodology
The research was qualitative and used the descriptive phenomenological method to study the perspective of psychologists working in the field of Down syndrome and of the parents of children with Down syndrome. In the study, 14 families of children with Down syndrome and 15 experts participated (who were either specialists, school teachers or professors). Families of children with Down syndrome were recruited through schools, while experts on the topic were selected based on their expertise and their work in the field of Down syndrome and a semi-structured interview was used to collect data and the average time of the interviews was about 45 minutes. As the interviews took place, an analysis of their text was done in order to identify common themes and patterns. Sampling continued until saturation was reached. After the interviews, the researchers extracted and coded the common concepts and patterns by using the MAXQDA software. The researchers analyzed the results based on the Colizzis Method which has several steps: reading all the descriptions; extracting important words and sentences; providing meaning for the extracted important sentences; defining the categories; combining the results; comprehensive description and final reliability of the findings (Morrow et al, 2015). After coding, in order to data accuracy, the participants were contacted by phone and received their opinion regarding the researchers' perception of their conversations in the interviews.
Results
These were the themes that were extracted from the interviews with parents and professionals: support, acceptance, coping skills, performance of children with Down syndrome, and concern for their future.
Conclusion
The results showed that the factors of support, acceptance, coping skills, performance of a child with Down syndrome, concern and future security have an effect on the quality of life of families of children with Down syndrome. Support included support received from family members, official institutions, and informal organizations and institutions. Parents of children with Down syndrome state that it is not possible for one person to meet the needs of a child with Down syndrome, and that the more family members participate in meeting their needs and helping them, the more mental pressure and fatigue that parents experience, reduces.
Most of the participants in the research complained about the lack of laws appropriate to the characteristics of these people and their families, the temporary nature or non-implementation of some of the existing laws. Regarding the financial support and facilities provided by the relevant institutions, the participants had a common view of their inadequacy and the inappropriate way of providing it.
Regarding the issue of specialized support, the participants believed that considering the special mental and physical needs of people with Down syndrome, it is necessary to establish specialized treatment centers and also train counselors and psychologists in this field. Another important and significant issue was the behavior of the medical staff with the families, which the families did not have a good experience, especially from the moment of birth. Some medical care personnel have disappointed the families about the child's future.
The support received from people around and informal parenting groups brings a higher quality of life for the family of children with Down syndrome. Communicating with other families in similar situations is a source of learning and emotional support.
Acceptance, at the family level makes family members learn coping skills, use them and continue to make efforts to help people with Down syndrome and help them to reach the maximum possible level. Social acceptance, provide opportunity for participating in the community of families and their children. Families with higher life and communication skills, have a higher degree of adjustment and resilience.
If parents have a positive view on religious values and beliefs, it helps them accept a child with Down syndrome, and see the child as a divine gift and test. Also, some parents change their opinions and beliefs after giving birth to a child with Down syndrome and choose a different worldview. Families reported greater satisfaction when their child demonstrated more self-help skills, academic achievement and success in professional activities. One of the concerns expressed by parents, was the future marriage of their child with Down syndrome and their siblings.
Acknowledgments
We are grateful to all the families and professionals who provided us with their valuable experiences.
Keywords: Quality of Life, Family, Down syndrome, Lived Experience.
saide barzegar; Shahrbanoo Aali; Hamidreza Aghamohammadian sherbaf
Abstract
Abstract Mothers of children with Down syndrome have difficult parenting experiences and are exposed to high levels of stress and psychological and physical consequences. These mothers' special education programs can help them to cope better with difficulties. Therefore, the present study was conducted ...
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Abstract Mothers of children with Down syndrome have difficult parenting experiences and are exposed to high levels of stress and psychological and physical consequences. These mothers' special education programs can help them to cope better with difficulties. Therefore, the present study was conducted to investigate the effectiveness of mindfulness-based stress reduction program on the psychological and physical well-being of mothers of children with Down syndrome. This study was conducted with a quantitative approach and a pretest-posttest design with a control group. The statistical population consisted of all mothers of students with Down Syndrome in Mashhad exceptional schools in the academic year of 2018-2019 who were selected by single stage cluster sampling. Thirty mothers of these children who scored higher than 22 on the General Health Questionnaire were selected and randomly assigned into two groups of mindfulness training and control group. Mothers in the experimental group received 8 two-hour sessions of mindfulness training program and the control group did not receive any training. The research instruments were life satisfaction scales, positive and negative affect, depression-happiness and physical symptoms. The results of covariance analysis showed that mindfulness-based stress reduction therapy significantly increased physical and psychological well-being of mothers of children with Down syndrome (p < 0/05). Therefore, this program is a good intervention program for mothers of Down syndrome children and can be used in medical centers and special schools for these children
seyed kazem mousavi sadati; Marjan Jirsaraei Bazargard
Abstract
Down syndrome is one of the most common genetic diseases with mild to moderate intellectual disabilities. The purpose of this study was to investigate the effect of superbrain yoga exercise on fluid intelligence, visual spatial perception, academic achievement and balance in children with down syndrome. ...
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Down syndrome is one of the most common genetic diseases with mild to moderate intellectual disabilities. The purpose of this study was to investigate the effect of superbrain yoga exercise on fluid intelligence, visual spatial perception, academic achievement and balance in children with down syndrome. This quasi-experimental study was conducted as a pretest-posttest with control group. The statistical population of the study included all students with Down syndrome in Tehran. Participants were 20 educable Down syndrome boys in elementary exceptional school of Shahid Beheshti with mean age (8/2±0/89) which selected by convenience sampling and randomly assigned into two experimental (n=10) and control (n=10) groups. The experimental group performed 12 weeks of experimental Yoga exercises. The data collection tools were Wechsler Intelligence Scale for Children - Fifth Ed and Static Equilibrium Stack Test. Shapirowilk, Levene and independent t tests of gained scores were used for data analysis. Superbrain yoga exercises did not have a significant effect on fluid intelligence (t =1. 06, P=0/30), Visual Spatial Perception (t =1/29, P=0/21) and static equilibrium (t = /45, P=0/65), but there was a significant effect on academic achievement of children (t = 2. 46, P=0/02). The results of this study showed that it would be advisable to use Superbrain Yoga exercises in educational achievement for Children with Intellectual Disabilities, along with other commonly used educational programs.
shahla pezeshk; janet hashemiazar; usef jalali
Abstract
The present study aimed to compare the neuropsychological function of adults with Down syndrome with and without Alzheimer disease. Research method was descriptive. Population of study was adults with Down syndrome that were been keeping in the center of disabled and mentally retarded peoples in Tehran ...
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The present study aimed to compare the neuropsychological function of adults with Down syndrome with and without Alzheimer disease. Research method was descriptive. Population of study was adults with Down syndrome that were been keeping in the center of disabled and mentally retarded peoples in Tehran on a full-time basis or were involved in rehabilitative activities on a part-time basis. Using the convenient sampling method, number of 16 adults with Alzheimer disease and number of 16 adults without Alzheimer disease were selected through dementia screening questionnaire for individuals with intellectual disabilities and then for comparing the neuropsychological function of samples, we used the bender-gestalt test and Wechsler intelligence scale for children, fourth edition. We also use the two independent samples t-test for answering the research questions. Results of bender-gestalt test indicated a significant difference between adults with Alzheimer and those without Alzheimer in terms of the frequency of errors. In other word, the frequency of errors in adults with Alzheimer was more than adults without Alzheimer. Results of Wechsler intelligence scale for children indicated no significant difference between adults with Alzheimer and those without Alzheimer in terms of the test factors such as “General ability, cognitive mastery, verbal comprehension, perceptual reasoning, working memory and information processing speed” but there was a significant difference between the two groups in the subtests of Wechsler scale, In other word, non-Alzheimer group’s performance was better than Alzheimer group in the subtests.
Mohammad Haddad Kashani; Ezzatollah Naderi; Maryam Seif Naraqi; Zahra Doroodian
Volume 2, Issue 7 , October 2012, , Pages 27-42
Abstract
This study is aimed at comparing the criteria of friendship and making friends in people with Down syndrome aged between 14 and 24 and other educable mentally retarded groups in Vali-e Asr Rehabilitation Center of Tehran in 2009-2010. In this field research, the statistical population consists of all ...
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This study is aimed at comparing the criteria of friendship and making friends in people with Down syndrome aged between 14 and 24 and other educable mentally retarded groups in Vali-e Asr Rehabilitation Center of Tehran in 2009-2010. In this field research, the statistical population consists of all educable individuals who have Down syndrome and are mentally retarded aged between 14 and 24 in the above said center. 25 persons with Down syndrome and 25 educable mentally retarded people are selected using convenience sampling and are homogenized in terms of particulars such as age, sex, and social-economic class. A test containing 28 questions designed by the researcher is applied and four fields of leisure time, cooperation, positive and negative communicative features are evaluated. The two groups are compared and an independent T test is performed for statistical analysis. Results show that with a reliability of 95%, there is no significant difference between the two groups with regard to spending leisure time together, cooperation and negative communicative features. However, they are significantly different when it comes to positive communicative features, and criteria of friendship and making friends. In other words, people with Down syndrome had a better performance than other educable mentally retarded people in this regard. In centers and schools special for children with mental disability and Down syndrome, issues about education and career are more emphasized, whereas these children need social skills including friendship and making friends. Therefore, these centers are recommended to pay attention to the social skills as well as educational aspect.