MOHSEN NIAZI; Sayed Hossein Siadatian Arani
Abstract
Abstract
Adolescence is known as one of the most challenging periods in human life, which brings many emotional, social and even educational crises. This course can be faced with more challenges and sufferings for teenagers who are intellectual disability, so the purpose of this research was to explain ...
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Abstract
Adolescence is known as one of the most challenging periods in human life, which brings many emotional, social and even educational crises. This course can be faced with more challenges and sufferings for teenagers who are intellectual disability, so the purpose of this research was to explain the lived experience of the challenges of intellectual disability teenagers. The research population included all boys with intellectual disability in the pre-professional and vocational schools of Kashan who were studying in the academic year 1402-1401, among them 9 people were targeted for Research were selected. The data was collected using semi-structured interviews and analyzed with the 7-step Colaizzi method. The results indicated the extraction of 3 main themes and 9 secondary themes. The main themes are: 1- social challenge (1- job and career future and worry about it, 2- free time, 3- shame and embarrassment of recognition, 4- concern about marriage), 2- individual challenge (1- acceptance) The negatives were 2- positive acceptance, 3- diseases and the need for medicine, 4- financial independence), 3- family challenges (1- family attitude) which were examined in detail in the research. According to the results, it was determined that it is necessary to deal with the problems and challenges of intellectual disability teenagers, and therefore, providing support and educational services for teenagers and their families can reduce their problems.
Keywords: Lived Experience, Phenomenological, Adolescent, Intellectual.
Extended Abstract
Introduction
Intellectual disability (ID) is one of the neurodevelopmental disorders that during the developmental period brings various harms to the affected person, family and society. According to the latest definitions of the American Association of Mental and Developmental Disabilities, this disorder is diagnosed with criteria such as damage in the field of mental functions such as reasoning, problem solving, planning, abstract thinking, judgment, learning, practical experience and understanding, as well as adaptive functioning. (Halvarsen et al., 2023). Adolescence is one of the most important stages in the development of human personality. Adolescents face many challenges in this period. These problems are also seen for teenagers with intellectual disabilities, such that weakness in self-confidence, anger control, inability to regulate personal and interpersonal demands, concern about social acceptance are other problems of theirs (Drozd et al., 2020).
Research Question
The current research seeks to answer the question, what issues, problems and challenges do teenagers with intellectual disabilities face?
Literature Review
Kedrova and Matantseva (2016) concluded that by teaching self-regulation, a large amount of challenges of adolescents with intellectual disability can be reduced. Pratt and Greydanus (2007) said that if a suitable support system is formed for adolescents with intellectual disability from the family and society, there will be fewer challenges for the adolescent and the family during this period. The only qualitative research conducted in the field of adolescents with intellectual disabilities is Shams-e-Islami, Mousavi and Rezaei (2023), who in their research entitled "Explaining the concept of loneliness in mentally retarded adolescents based on the existential phenomenology approach" showed four main themes in the interviews. "Loneliness as an experience of separation", "consequences of loneliness", "the meaning of loneliness" and "loneliness as a basic life experience" were extracted, and each of these main themes emerged through the analysis of several sub-themes.
Methodology
The current research was of qualitative type and phenomenological method was used for its implementation. This research, using the research tradition of lived experience, tried to identify the reality, as it appears to the research subjects. In the implementation of this phenomenological research, instead of using data to test hypotheses arising from research literature, which is done in other quantitative researches, verbal reports of people about their experiences were used as data. The statistical population included all boys with mental disabilities who were studying in pre-professional and professional schools in the academic year of 2022-2023 in Kashan city. Data collection was done through in-depth semi-structured interviews, individually and face-to-face in a separate room from the classroom. The questions asked focused on the problems and issues that these teenagers experience in school and outside of school. With the informed consent of the participants and educational staff, the interviews were recorded anonymously. Depending on the willingness of the participants and the conditions of the interview, the duration took between 20 and 45 minutes. For reliability, the findings, including the main themes and sub-themes of the research, were examined, consulted and modified through the opinions of faculty members of the Department of Psychology of Exceptional Children of Isfahan University. The participants in this research were 9 people who were in the age range of 16 to 22 years, and their average age was about 17 years, and the educational level of these people was from 8th to 12th.
Results
After analyzing the data, 3 main themes and 9 sub-themes were extracted, which can represent the experiences of boys with intellectual disabilities. In Table 1, the main theme and sub-themes extracted from the research are summarized.
Table 1
Table 1: Themes extracted from the interviews
Main themes
Sub-themes
Social challenge
Career and career future and worry about it
Free time
Shame and embarrassment of recognition
Marriage concern
Individual challenge
Negative acceptance
Positive acceptance
Diseases and the need for medicine
Financial independence
Family challenge
Family attitude
Discussion
By providing the successful employment of teenagers with intellectual disabilities, the goals of education and training of this group are met to a great extent, because many educational processes are designed to achieve a career success for the future. Participating in leisure activities not only strengthens self-confidence, mental vitality and vitality, but also strengthens the sensory and motor skills of people with intellectual disability and reduces behavioral problems, progress in education, personal sufficiency and expansion of interactions. Sexual need is considered as an undeniable need in people with intellectual disabilities, but in the context of the ability of these people to marry and accept the role of wife and parenthood, the intelligence conditions, abilities and skills of these people, as well as support and educational services in that community should be noticed. The higher the quality of educational programs in exceptional educational schools in order to adapt to society, acquire social skills and prepare for jobs, the acceptance rate of these schools can be increased.
Conclusion
Based on the results obtained in the present research, it can be stated that the challenges faced by boys with intellectual disability can be examined and explained from different personal, family, social and psychological angles, and solutions should be found for each of them.
Acknowledgments
All the teenagers who participated in this research are thanked and appreciated.
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.
mehrzad ramezanloo; Khadijeh Abolmaali Alhosseini; Fariborz Bagheri; somayeh robatmili
Abstract
Autism spectrum disorder is a complex developmental condition that is associated with ongoing challenges in the child's social interaction, speech, and nonverbal communication, and affects mother-child interaction. The purpose of this study was to investigate the lived experience of mothers’s children ...
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Autism spectrum disorder is a complex developmental condition that is associated with ongoing challenges in the child's social interaction, speech, and nonverbal communication, and affects mother-child interaction. The purpose of this study was to investigate the lived experience of mothers’s children with autism spectrum disorder. The research method was qualitative with a descriptive phenomenological approach. The population included mothers of children with autism who had been referred to the Autism Association of Iran (in Tehran) in 1398. The sample was selected by the purposeful method and 8 mothers were examined until saturation was achieved. Data were collected by the semi-structured interview method and analyzed by Colaizzi’s seven-step method. Findings from the lived experience of mothers of children with autism were summarized in 4 main themes including the expression of conflicting emotions (positive and negative), weak psychological capital, limitations in social support networks, and effects and consequences. Also, several other sub-themes were identified. The findings of this study emphasize the importance of providing appropriate social support services for mothers of children with an autism spectrum disorder. The results of this study emphasize the importance of providing appropriate social support services for mothers with children with an autism spectrum disorder. It is also recommended that psychologists and counselors focus on promoting psychological capital to improve quality of life for mothers with children with an autism spectrum disorder.