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.
Alireza Mohammadi Sangachin Doost; Abbasali Hossein Khanzadeh; Maryam Kousha; Ashkan Naseh
Abstract
The aim of this study was to evaluate the effectiveness of self-compassion training on the quality of life of mothers of children with attention-deficit / hyperactivity disorder. In this study, a quasi-experimental method with a pre-test-post-test design with a control group was used and its statistical ...
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The aim of this study was to evaluate the effectiveness of self-compassion training on the quality of life of mothers of children with attention-deficit / hyperactivity disorder. In this study, a quasi-experimental method with a pre-test-post-test design with a control group was used and its statistical population also included mothers of children aged 5 to 11 years, boys and girls with attention-deficit/hyperactivity disorder in Rasht in 2020-2021. The study sample consisted of 28 mothers from the statistical population selected by convenience sampling method and randomly placed in experimental and control groups. The experimental group participated in the compassion training group as a group for 8 weekly sessions. Both groups were evaluated in two stages of pre-test and post-test with the Short Form Quality of Life Questionnaire (1996). The results showed that the self-compassion training intervention had a significant effect on the scores of quality of life components (physical health, psychological health, social relations, and environmental health), in the post-test stage the scores of quality of life of the experimental group increased significantly (p <0.001). Self-compassion training in comparison with other kinds of training can have very useful results for mothers, especially in order to increase their quality of life, and can be introduced and implemented as one of the axes of parental training in comparison with other methods and training.
tayebe taziki; Khoda Morad Momeni; jahangir karami; .Gholam Ali Afrooz
Abstract
The aim of this study was to investigate the intervention with mindfulness on the quality of life and psychological well-being of mothers of students with intellectual disabilities. The research population included all mothers of students with mental disabilities in Golestan province, 30 of them were ...
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The aim of this study was to investigate the intervention with mindfulness on the quality of life and psychological well-being of mothers of students with intellectual disabilities. The research population included all mothers of students with mental disabilities in Golestan province, 30 of them were selected by a simple random sampling method and participated in a quasi-experimental design with a control group and a non-identical two-group design with pre-test, post-test, and follow-up. Among the above sample, 15 people in the experimental group and 15 people in the control group were randomly assigned. Then, a mindfulness-based intervention program was performed for 8 group sessions. To evaluate the research variables, Quality Of Life (World Health Organization, 1994), and Psychological Wellbeing Scale (Ryff, 1980) were used in three stages: pre-test, post-test, and follow-up. Data obtained from the control and experimental groups were analyzed using multivariate analysis of covariance and repeated measures analysis of variance. The above findings showed significant quality of life and psychological well-being (at the level of p <0.05). The above results were maintained after two months of follow-up. Overall, it can be concluded that mindfulness-based intervention can increase the quality of life and psychological well-being of mothers of students with intellectual disabilities.
houshang garavand; Fatemeh Abdoli; Abdollah Mohammadi; saeideh sabzian
Abstract
The present study was conducted by a post-event method to investigate the relationship between psychological capital and quality of life in school with regard to the type of schools studied. The statistical population of the study is the second-year high school students of Sanandaj who had registered ...
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The present study was conducted by a post-event method to investigate the relationship between psychological capital and quality of life in school with regard to the type of schools studied. The statistical population of the study is the second-year high school students of Sanandaj who had registered in the academic year 2018-2019. Estimation of sample size using Cochran's formula for the community of gifted students was equal to 118 and for normal students was equal to 137 people who were selected by cluster sampling. The Psychological Capital Questionnaire (PCQ) and Quality of Life Questionnaire at Ainley & Bourke School (1992) were used to collect data. The results of the independent group t-test and multivariate analysis of variance showed that there is no significant difference between gifted and normal students on the whole scale of psychological capital, but there is a significant difference in terms of the hope component. There was also a significant difference between gifted and normal school students in the whole scale of school quality of life and opportunity subcomponent. Also, based on the calculated beta coefficients, it can be concluded that the relationship between the whole scale of psychological capital and the hope component with the quality of school life is stronger among students of ordinary schools than in gifted schools.
mehrzad ramezanloo; Khadijeh Abolmaali Alhosseini; Fariborz Bagheri; somayeh robatmili
Abstract
The aim of this study was to determine the effectiveness of stress-emotion management skills training on quality of life and cognitive emotion regulation of mothers of children with autism spectrum disorder. This study was an experimental study with a pretest-posttest-follow-up plan with a control group. ...
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The aim of this study was to determine the effectiveness of stress-emotion management skills training on quality of life and cognitive emotion regulation of mothers of children with autism spectrum disorder. This study was an experimental study with a pretest-posttest-follow-up plan with a control group. The statistical Society was all mothers of children (a both 3500 cases) with autism spectrum disorder in Iran Autism Association in Tehran, from which 30 people were selected by purposive sampling and randomly divided into experimental and control groups (15 cases in each group). Garnefski Cognitive Emotional Regulation(2001) and Quality of Life (WHOQOL-BREF)(1991) Questionnaires were used to collect data. Mixed multivariate analysis of variance was used to analyze the data with respect to defaults. The mothers' promotion program (ramezanlo, 1399) was implemented in 7 two-hour sessions for the experimental group. The results showed that the scores of negative emotion regulation strategies decreased in the experimental group compared to the control group, but in positive emotion regulation strategies and quality of life in the components (mental health and social relationships) increased significantly (P <0.01).,in the follow up step lasting effect was seen. Due to the effectiveness of mothers' promotion program (stress-emotion management), improving the quality of life and using effective strategies to regulate the emotions of mothers of autistic children, this package can be used as a psychological intervention.
maryam safara; mina khanbabaee; minoo khanbabaee
Abstract
According to the situation of children with intellectual disability and the adverse effects of this crisis on mothers, by creating physical, psychological and social stresses that lead to isolation, a sharp decline in quality of life and life hope. Then it is necessary to be attentioned to the importance ...
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According to the situation of children with intellectual disability and the adverse effects of this crisis on mothers, by creating physical, psychological and social stresses that lead to isolation, a sharp decline in quality of life and life hope. Then it is necessary to be attentioned to the importance of spiritual skills. This is a pretest- posttest control group semi-experimental research. 20 having Child with intellectual disability at the Shahid Sarikhani Exceptional School in Tehran in 2017-2018 academic year, were assigned to two groups of 10 subjects. Data of mothers' quality of life and life hope was gathered by quality of life questionnaire (26-136 score ) and Snyder’s hope scale(12-48 score). The Spiritual skills training were performed for the experimental group in 8 sessions for 90 minutes, while control group did not receive any training. Subjects were compared and evaluated after the sessions.The results showed that the mean life hop score of mothers in the intervention group increased significantly from 20.11±3.21 before the intervention to 26.00±3.24 after the intervention and the mean quality of life score increased significantly form 67.00±11.83 to 72.22±10.10 (p < 0.01). Based on the results of this research, Spiritual skill training has positive effect on promoting quality of life and life hope of mothers having Child with intellectual disability.
Farzaneh Ghanimi; Asghar Dadkhah; Esmat Danesh; Sagegh Taghiloo
Abstract
Autism spectrum disorder is a type of neurodevelopmental disorder characterized by persistent impairment in social interactions and communication as well as repetitive and specific behaviors. The purpose of this study was to compare of the effectiveness of stress management and social support perception ...
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Autism spectrum disorder is a type of neurodevelopmental disorder characterized by persistent impairment in social interactions and communication as well as repetitive and specific behaviors. The purpose of this study was to compare of the effectiveness of stress management and social support perception training based on cognitive-behavioral manner on quality of life of mothers of children with autism spectrum disorder. The research method was experimental with pretest, posttest and follow up design. First, the subjects were screened for inclusion criteria, then 30 mothers with children with autism spectrum disorder were selected and after being matched, they were randomly assigned to experimental and control groups (10 person in each group). Mothers in the two groups, stress management and social support perception management, received 8 sessions of 90 minutes of intervention and the control group received no intervention. The research instrument, including WHO Quality of Life Questionnaire (1996), was administered to the subjects in all three stages. Data analysis using statistical method of repeated measures analysis of variance, showed that training of social support perception, improves component of social relations (P<0.001), and training of stress management, improves component of physical health (P<0.001), more than other components of quality of life of mothers. Based on the findings, it is suggested that support programs be implemented in community mental health organizations to develop training packages and implement guidelines related to empowering parents with children with autism spectrum disorder.
Maliheh Shahrestani; Abolfazl Karami; Mohsen Doostkam; Amir Hossein Alimohammadi
Volume 3, Issue 9 , April 2013, , Pages 93-110
Abstract
The Effectiveness of Hope Therapy on Improving Depression and Quality of Life among Mothers of Intellectual Disability Children
This study aims at investigating the effectiveness of hope therapy on improvement of depression and quality of life among mothers of intellectual disability children. ...
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The Effectiveness of Hope Therapy on Improving Depression and Quality of Life among Mothers of Intellectual Disability Children
This study aims at investigating the effectiveness of hope therapy on improvement of depression and quality of life among mothers of intellectual disability children. The research procedure is quasi-experimental with pre-test and post-test design and control group. Research population consists of mothers of intellectual disability whose children have been students of 28 exceptional schools in the academic year of 2011-2012 in Mashhad. 30mothers of intellectually disable children are selected by using multistage cluster sampling and are and randomly assigned in two experimental (15 persons) and control groups (15 persons). The experimental group receives hope therapy training for 6 sessions. The data are gathered by using Beck Depression Inventory-Õ and the brief form of quality of life questionnaires. Questionnaires are completed by both experimental and control groups in three stages before, after and 4 weeks after the intervention (follow-up phase). The results are analyzed with Moncova using SPSS 18 software. The Moncova analysis results show that there is significant difference between average scores of experimental and control groups in both post-test and follow-up stages )P<0/001). As a conclusion, hope therapy training is quite effective in improving depression and quality of life in mothers of intellectually children.
Mansoor Soudani; Mahnaz Mehrabizadeh Hoanrmand; Zargham Zarghamian
Volume 3, Issue 10 , March 2013, , Pages 75-92
Abstract
The purpose of this study is to investigate theefficacy of meaning training on resiliency and improving the lifequality of motherswith children of special needs in Borazjan city. 222 mothers completed thequestionnaire of World Health Organization Quality Of Life andConnor-Davidson Resilience Scale. Then ...
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The purpose of this study is to investigate theefficacy of meaning training on resiliency and improving the lifequality of motherswith children of special needs in Borazjan city. 222 mothers completed thequestionnaire of World Health Organization Quality Of Life andConnor-Davidson Resilience Scale. Then 40 of these persons with one standarddeviation below the mean score in both questionnaires were selected randomlyfor testing the hypothesis. These 40 persons were divided into two groupsrandomly (experimental and control group). At first the two groups took apre-test, and then the experimental group received meaning training for 10 90-minutesessions. At the end, both groups took post-test simultaneously and after onemonth the follow-up test was done. The data of the study were analyzed by MANCOWA method. The results show that the meaning training hasincreased resiliency and improved the quality of life of the experimental groupin comparison with the control group.A Follow-up study after one month shows the usefulness of meaning training on resiliencyand quality of life
Amin Hasan pour kheir abadi; Maryam Seif Naraghi; Masoud Jafari; Amir Hossein Mosavi
Volume 1, Issue 2 , July 2011, , Pages 49-72
Abstract
Objective: This study reviews and compares the relationship between different aspects of the relationship between two variables: self-determination skills and the quality of life in two groups of male students: students with and students without hearing damage of guidance schools in the academic year ...
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Objective: This study reviews and compares the relationship between different aspects of the relationship between two variables: self-determination skills and the quality of life in two groups of male students: students with and students without hearing damage of guidance schools in the academic year 88-89 in Tehran. Method: This is a correlation study. The statistical population has been all the male students with and without hearing impairment of all guidance schools of Tehran in the academic year 88-89. Accessible sampling was undertaken including 18 hearing impaired and 15 non- hearing –impaired students. The samples were matched for age, intelligence and social class. The assessment tools were: the Self Determination Scale and the Quality of Life questionnaire. The statistical analysis was done with the Fisher's Z test. Results: The results show that only the correlations between two dimensions of “having choice” and “being independent” were significantly different between the two groups. There were no significant differences in the correlations amongst other aspects of the findings. So we can conclude that self- determination relationship skills with quality of life in both groups are equal between the two groups, whereby there is no significant difference to register. Conclusion and recommendations: Based on the results of this study, it is to promote the quality of life of the students suffering from hearing impairments while the results indicate that their autonomy is not sufficient as “having choice” and “being independent” are the underlying capacities they have shown to be lacking.