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.
Sogand Ghasemzadeh; .Gholam Ali Afrooz; simin hosseinian; mohammad Gholami Fesharaki
Abstract
Family is known as the core of child and adolescent care and it plays an important role in the treatment of behavioral problems in children and adolescents. The aim of this study was to investigate the effectiveness of FCI on the behavioral consequences of Iranian children and adolescents. This study ...
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Family is known as the core of child and adolescent care and it plays an important role in the treatment of behavioral problems in children and adolescents. The aim of this study was to investigate the effectiveness of FCI on the behavioral consequences of Iranian children and adolescents. This study is a systematic review and meta-analysis of all published Persian or English articles (during the years 2011 to 2020) in the field of FCI in the Iranian child and adolescent community using an internal database such as SID, Iran Medex, MagIran, Civilica, Irandoc, and English Scopus, Web of Science, Pubmed, Science Direct and Google Scholar by combining the appropriate words. In this study, the Standard Mean Difference index (SMD) and STATA software were used to analyze the data. Among the 103 articles found in the initial search, only 38 articles (10 (26%) articles on adolescents, 28 (74%) articles on children) were eligible for inclusion in the study. The SMD index of FCI compared to the control group is generally equal to 1.60 with a 95% Confidence Interval (CI) (1.31 to 1.90) and in the child sample equal to 1.39 with a 95% CI (1.31 to 1.90). The adolescent sample was reported to be 2.18 with a 95% CI (1.44 to 2.91). The results of this study showed that FCI in children and especially Iranian adolescents have good therapeutic efficacy.
Mohammad Ashori; .Gholam Ali Afrooz; Sogand Ghasemzadeh
Abstract
The aim of the current meta-analysis was to determine the biological, cognitive and psychosocial characteristics of relative parents and irrelative parents that having more than one exceptional child in Iran. Study procedure was meta-analysis. This research specifies the effect size of the biological, ...
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The aim of the current meta-analysis was to determine the biological, cognitive and psychosocial characteristics of relative parents and irrelative parents that having more than one exceptional child in Iran. Study procedure was meta-analysis. This research specifies the effect size of the biological, cognitive and psychosocial characteristics of relative parents and irrelative parents that having more than one exceptional child by using meta-analysis technique and integrating the results of different studies. On the whole, 9 methodologically acceptable studies were selected and met analysis was done on them. Sources of data search were scientific documents in universities, noor specialized magazines database (Normans), Scientific Information Database (SID) and Iranian Research Institute for Information Science and Technology (IRANDOC). The research tool was meta-analysis checklist. Finding of research showed that the rate of effect size of biological, cognitive and psychosocial characteristics of relative parents and irrelative parents that having more than one exceptional child in Iran was high. Therefore, it seems that the education programs before of marriage can be used as a method to prevent the relative marriage. On the other hand, planning to prevent of the impairments of biological, cognitive and psychosocial characteristics of relative parents that having more than one exceptional child has particular importance.
Sakine Pourtaleb; Bagher Ghobari Bonab; Sogand Ghasemzadeh; Hamed Babakri
Abstract
Objective: The present study was conducted to investigate the effectiveness of the forgiveness program in reducing anger problems and promoting anger management in adolescents residing in Tehran Correctional Center. This study was a quasi-experimental study with pretest-posttest design and control group. ...
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Objective: The present study was conducted to investigate the effectiveness of the forgiveness program in reducing anger problems and promoting anger management in adolescents residing in Tehran Correctional Center. This study was a quasi-experimental study with pretest-posttest design and control group. In this study, 30 adolescents with behavioral problems residing in the correctional center were selected by available sampling method. Subjects were randomly divided into experimental and control groups. The experimental group participated in 16 sessions of 120-minute forgiveness training sessions, while the control group was not trained. The data collection tool in this study was the STAXI-2 Spielberger Anger-Trait Anger Questionnaire and the obtained data were analyzed by univariate covariance method using SPSS software version 23. Findings showed that forgiveness program training has a significant effect on anger management skills of adolescents with behavioral problems (p <0.05). Therefore, teaching this program is associated with positive and effective results on controlling and managing the anger of the experimental group, and paying attention to forgiveness programs in reducing adolescent behavioral problems is necessary and of particular importance.
Mohmmad Ashori; Sogand Ghasemzadeh; Farzaneh Safarpour
Abstract
The aim of this study was to investigate of the psychometric properties of the Behavioral Emotion Regulation Questionnaire for adolescents and adults for first time in Iran. The present research was descriptive and of survey type. Translation and back-translation processes were used to prepare the Persian ...
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The aim of this study was to investigate of the psychometric properties of the Behavioral Emotion Regulation Questionnaire for adolescents and adults for first time in Iran. The present research was descriptive and of survey type. Translation and back-translation processes were used to prepare the Persian version of the Behavioral Emotion Regulation Questionnaire developed by Kraaij & Garnefski (2019). The statistical population of the present research was adolescents and adults in 2019. The sample included 461 adolescents who were selected through the multistage cluster random sampling method in the provinces of Tehran (Districts 2, 4, 11, and 20) and Isfahan (Isfahan, Shahr-e Reza, and Najaf Abad cities). The viewpoints of nine experts were gathered to assess the questionnaire’s face and content validities. Lawashe method and Waltz and Bausell method were used to calculate the content validity index. Construct validity was analyzed using factor analysis. The reliability of the scale was calculated using Cronbach’s alpha and test-retest methods. The results of the exploratory and confirmatory factor analyses showed that the five-factor model had a good fitness and its construct validity was confirmed, respectively. The face validity and content validity (CVI=0/84) were confirmed satisfactorily. The content validity indices were .82, .87, .86, .78 and .83 for the subscales of seeking distraction, withdrawal, actively approaching, seeking social support, and ignoring, respectively. The reliability coefficients for the subscales of the Behavioral Emotion Regulation Questionnaire, using Cronbach’s alpha, were found to be .88, .90, .91, .89 and .87, respectively. Additionally, reliability was calculated by the test-retest method and found to be between the range of .59 to .66. The results of the convergent and divergent validities between the Behavioral Emotion Regulation Questionnaire through its simultaneous implementation with the Cognitive Emotion Regulation Questionnaire and the scale of depression, anxiety and stress were also examined and approved. Therefore, the Behavioral Emotion Regulation Questionnaire is a valid and reliable tool, and it can be used to assess the behavioral emotion regulation of individuals in psychological interventions in the Iranian society.