saedeh khojasteh; farangis demehri; alireza afshani
Abstract
AbstractThe present study aimed to investigate the psychometric properties of the Autism Family Experience Questionnaire in families with autistic children in Yazd province. The study used a descriptive, correlational-normative method. The statistical population consisted of all families with autistic ...
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AbstractThe present study aimed to investigate the psychometric properties of the Autism Family Experience Questionnaire in families with autistic children in Yazd province. The study used a descriptive, correlational-normative method. The statistical population consisted of all families with autistic children in 1403, from which a sample of 385 individuals was selected by convenience sampling. The measures used in this study were the Autism Family Experience Questionnaire, an Autism Symptom Severity scale, and a Social Support scale. The validity of the Autism Family Experience Questionnaire was confirmed through content validity (using CVI and CVR) and confirmatory factor analysis using AMOS software. An analysis of internal consistency revealed a positive and significant relationship between scores on the Autism Family Experience Questionnaire, Autism Symptom Severity, and Social Support. To examine the internal consistency reliability of the questionnaire, Cronbach's alpha was calculated. The findings showed a Cronbach's alpha of 0.929 for the autism parent experience subscale, 0.916 for the family life subscale, 0.94 for the child development, understanding, and social relations subscale, 0.897 for the child symptoms, feelings, and behavior subscale, and 0.952 for the total autism family experience scale. The results indicate that the Autism Family Experience Questionnaire has appropriate reliability and validity. Therefore, this scale can be used to assess the family experience of autism.Keywords: Psychometric Properties, Autism Family Experience Questionnaire, Autism Spectrum Disorder, Family Extended AbstractIntroductionFrom a systemic perspective, the functioning of each family member affects the overall system, and the challenges faced by one member can disrupt the functioning of others. Autism Spectrum Disorder (ASD) is one of the most prevalent neurodevelopmental disorders, characterized by impairments in social interaction, communication difficulties, and restricted, repetitive patterns of behavior (American Psychiatric Association, 2024). These challenges not only affect the lives of individuals with ASD but also impose significant psychological, social, and economic burdens on their families (Hodges et al., 2020). Prior research has consistently documented high levels of stress among families of children with ASD, which arises from factors such as stigma, intensive caregiving demands, social isolation, financial strain, and long-term concerns about the child’s future (Hoogsteen & Woodgate, 2013; Lutz et al., 2012; Gomes et al., 2015). Parents often report feelings of shame when unable to manage their child’s behaviors in public (Pisula-Barancko et al., 2021), while frequent "meltdown" episodes demand constant attention and reduce opportunities for rest (Ten Hoopen et al., 2010). Moreover, many families experience isolation from relatives and friends who fail to understand or accept their child’s condition, which further intensifies their stress (Pinto et al., 2016).Research also highlights differences in the lived experiences of mothers and fathers. Fathers often struggle with accepting developmental changes, employing effective coping strategies, navigating shifting paternal roles, and managing recurring feelings of shame and guilt following the diagnosis (Brown et al., 2021). Mothers frequently report experiencing ambivalent emotions, low psychological capital, and limited social networks (Ramezanloo et al., 2020). These findings underscore the importance of considering the entire family unit in intervention planning, as parental involvement is a key factor in improving treatment outcomes (Miner et al., 2023).Existing instruments measuring autism-related outcomes primarily focus on parental stress or general quality of life, paying limited attention to family-specific lived experiences (Leadbitter et al., 2018). Common tools—such as the Social Responsiveness Scale, Autism Spectrum Rating Scales, Aberrant Behavior Checklist, and child anxiety questionnaires—largely assess individual child symptoms (Ghadiri et al., 2022). This gap underscores the need for a comprehensive tool that evaluates both family experiences and child-related behaviors.The Autism Family Experience Questionnaire (AFEQ), developed by Leadbitter et al. (2018), was designed to capture the personal and family experiences of parents, as well as the developmental, behavioral, and emotional features of their children with ASD. The AFEQ assesses four domains: parenting experience, family life, child development, and social understanding/relationships, in addition to child symptomatology. It has demonstrated good internal consistency and convergent validity in studies conducted in the UK and Turkey (Leadbitter et al., 2018; Ebugla, 2024). Given the rising prevalence of ASD in Iran and the current lack of integrated tools assessing both family experiences and child symptoms, this study aims to examine the psychometric properties of the AFEQ within the Iranian context. Validating this instrument could provide researchers and clinicians with a comprehensive, reliable measure to assess the lived experiences of families raising children with ASD.Research QuestionDoes the Autism Family Experience Questionnaire (AFEQ) demonstrate valid and reliable psychometric properties for assessing the lived experiences of Iranian families of children with Autism Spectrum Disorder (ASD)? MethodologyThis study aimed to examine the psychometric properties of the Autism Family Experience Questionnaire (AFEQ) within an Iranian context. The research was applied in its purpose, quantitative in design, and descriptive-correlational in method, utilizing a survey approach. The statistical population consisted of all parents of children with Autism Spectrum Disorder (ASD) in Yazd Province, Iran, in 2024 (approximately 730 individuals, according to the Welfare Organization). A total of 391 parents were initially recruited via convenience sampling. After the removal of incomplete questionnaires, data from 385 participants were included in the final analysis.The inclusion criteria consisted of having at least one child with ASD and without comorbid ADHD, based on parent reports. The exclusion criterion was incomplete submission of the questionnaire. The study employed three instruments: (1) the Autism Family Experience Questionnaire (AFEQ; Leadbitter et al., 2018), a 48-item tool comprising four subscales that assess parenting experience, family life, child development and social relationships, and child symptoms; (2) the Gilliam Autism Rating Scale (GARS; Gilliam, 2014), a 56-item scale measuring restricted/repetitive behaviors, communication, social interaction, and emotional responses; and (3) the Multidimensional Scale of Perceived Social Support (MSPSS; Zimet et al., 1986), a 23-item measure assessing support from family, friends, and significant others. ResultsA total of 385 parents participated in the study, comprising 90 males (mean age = 43) and 295 females (mean age = 37). Among the participants, 202 had a high school diploma or lower, and 183 held a bachelor’s or master’s degree. The psychometric evaluation of the Autism Family Experience Questionnaire (AFEQ) included assessments of content validity, construct validity, and internal consistency reliability. Content validity, assessed by 10 experts using CVR and CVI indices, was satisfactory, with all items exceeding the recommended thresholds (CVR > 0.62, CVI > 0.79). Construct validity was examined using confirmatory factor analysis (CFA) in AMOS. The results showed that all factor loadings were above 0.4 and statistically significant (p <.001), and model fit indices confirmed the adequacy of the factor structure.Internal consistency analysis revealed a positive and significant correlation between autism symptom severity and family experience (p <.001), and a negative correlation between social support and family experience (p <.001). Reliability, assessed using Cronbach’s alpha, indicated high internal consistency for all subscales: Parenting Experience (α = 0.929), Family Life (α = 0.916), Child Development and Social Relationships (α = 0.940), Child Symptoms (α = 0.897), and the overall scale (α = 0.952). These results collectively demonstrate that the AFEQ is a valid and reliable instrument for assessing the experiences of Iranian families with children on the autism spectrum. Discussion and ConclusionThis study aimed to examine the psychometric properties of the Persian version of the Autism Family Experience Questionnaire (AFEQ), an instrument designed to assess parents' personal and family experiences alongside the developmental, emotional, and behavioral characteristics of their children with Autism Spectrum Disorder (ASD). The results demonstrated strong content validity, with all items meeting satisfactory indices. Reliability analysis revealed high internal consistency for all subscales, with Cronbach’s alpha coefficients ranging from 0.897 (Child Symptoms) to 0.940 (Child Development and Social Relationships), and 0.952 for the overall scale, a finding consistent with previous studies (Ibogla et al., 2024). Furthermore, confirmatory factor analysis supported the questionnaire's construct validity, demonstrating a good model fit (CMIN/df = 2.81, RMSEA = 0.06, PNFI = 0.606) and confirming that the four subscales—Parenting Experience, Family Life, Child Development, and Child Symptoms—measure distinct underlying dimensions.Correlation analyses revealed a significant positive relationship between autism symptom severity and family experience, indicating that families of children with more severe symptoms reported greater challenges. Conversely, a significant negative correlation was found between social support and family experience, suggesting that higher levels of perceived challenges were associated with lower levels of social support. This finding is consistent with Leadbitter et al. (2018).In summary, the findings indicate that the Persian version of the AFEQ is a valid, reliable, and practical instrument for assessing the experiences of families with children on the autism spectrum. Study limitations include the inability to control for cultural and socioeconomic variables, as well as differences in the treatment levels received by the children, which may affect the generalizability of the results. Future studies are recommended to include an assessment of test-retest reliability to further validate the instrument's consistency over time.
Yusef jamali; Maryamsadat Fatehizade; Mohammad Reza Abedi
Abstract
Abstract
The study aimed to investigate the effect of increasing patience group training on self-efficacy and attitude of mothers with exceptional children. This quasi-experimental study involved a pre-test-post-test design with a control group. The population of the study included all mothers with ...
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Abstract
The study aimed to investigate the effect of increasing patience group training on self-efficacy and attitude of mothers with exceptional children. This quasi-experimental study involved a pre-test-post-test design with a control group. The population of the study included all mothers with exceptional children in Mashhad who were registered with the exceptional education department in Khorasan province. Voluntary participation and sample selection using random sampling were utilized. Thirty-two mothers of exceptional children were randomly assigned to experimental and control groups (16 participants per group). The instruments used to measure the study variables were the patience, Domka self-efficacy, and parents' attitudes toward exceptional children questionnaires. A pre-test was conducted on both groups. The experimental group underwent ten sessions of patience training, while no training was provided to the control group. After the training sessions, both groups took the questionnaires again (post-test). Data were analyzed using univariate analysis of covariance (ANCOVA) and multivariate analysis of covariance (MONCOVA). The results revealed that patience training led to enhanced self-efficacy, reduced hopelessness, improved attitude, increased failure tolerance, and lower levels of shame in mothers with exceptional children. As a result, it is recommended that counselors and psychologists focus on patience training in family education programs and groups of parents of exceptional children.
Keywords: Patience, Self-Efficacy, Attitude, Mothers Of Exceptional Children.
Extended Abstract
Introduction
When an exceptional child is born, the parent's experience of parenting and the process of acceptance will be different. (Azad Yekta, 2021). An exceptional child is defined as a child with mental, physical, social, or emotional disorders that may stop or slow down their growth and development. This could lead to behavioral and emotional issues, and pose challenges for parents (Joe and Associates, 2020, Afsari & Zeinali, 2021). Parents may feel a wide range of emotions, including anger, guilt, and disappointment, in their struggle to adapt to the situation of having an exceptional child. This experience has been linked to mental health issues and marriage problems and often leads to a need for receiving educational and empowerment programs (Rane, 2020; Kargar and Asghari Ebrahim Abad, 2015; Rezapour Mirsaleh and associates, 2020). One of the primary reasons for educating mothers is to shape, change and improve their behavior. Group education has been found to be among the most effective approaches in recent years (Norouzi and Associates, 2019). However, there has been a lack of focus on the importance of patience in regard to factors such as self-efficacy and attitude. The potential benefits of cultural and spiritual practices in improving self-efficacy and changing attitudes towards exceptional children have also not received sufficient attention.
This study aims to investigate the effects of a patient-education group based on cultural and religious teachings to enhance endurance and acceptance of hardships in the mothers of exceptional children. The goal is to examine whether this intervention will improve self-efficacy and attitudes in these mothers or not.
Literature review
The experience of living with an exceptional child can be highly challenging for mothers, who are under tremendous mental pressure to help their children navigate various difficulties and maintain their well-being. In this environment, their attitude towards their children is crucial, as it can greatly impact their ability to manage the various challenges they face and ensure their family's well-being (Jebelli & Khademi, 2019; Rani, 2020). Belief in one's self-efficacy has been identified as an important factor in influencing people's attitudes. Triandis explains that improvements in attitude can lead to increases in self-efficacy (Namazi & Associates, 2020). Along with positive attitudes, self-efficacy can fulfill basic cognitive needs such as a sense of worth, autonomy, and social relations. Moreover, the journey towards building self-efficacy can be a challenging one for exceptional children's parents, with potential ups and downs (Smart, 2016).
The role of self-efficacy in life is well-documented, particularly in the context of providing mothers of exceptional children with the necessary skills and support to navigate the challenges they face. Improving self-efficacy has been identified as a priority for these mothers and makes it urgent to develop interventions to address this need. Patience, as outlined by Currier and associates (2015), is central in allowing individuals to find meaning and purpose in times of difficulty. This can provide a valuable framework for understanding the role of self-efficacy in supporting mothers of exceptional children to navigate challenges and find a sense of purpose in their roles.
Patience can be defined as an individual's capability to delay a desired outcome without experiencing negative emotions or reactions towards the present situation (Roberts & Fishbach, 2020). Patience, from a psychological perspective, refers to one's ability to effectively manage internal and external pressures. This can involve learning to respond to challenging situations in a way that reduces stress levels and promotes a sense of emotional security. Psychologists identify three main components in the development and maintenance of patience: emotional, cognitive, and behavioral. These components relate to an individual's ability to tolerate uncertainty, regulate their emotions and beliefs, and modify their behaviors accordingly (Ghebari Bonab & Associates, 2017). Overall, patience
Methodology
This research study examines the impact of patience education on the self-efficacy and attitudes of mothers with children with special needs. The study utilizes a quasi-experimental design, with a randomized control group consisting of two groups of moms: the examination group that received 10 training sessions on patience and the witness group that did not receive any training. The study collected data from 32 moms via pre-testing and post-testing, using questionnaires focused on patience, self-efficacy, and parental attitudes towards exceptional children. This is an important area of research as there is a need to identify and implement effective methods to improve the well-being of mothers with children with special needs.
Introduction to intervention program
Based on this information, it appears that the 10-session training program focused on building patience through a variety of strategies, including:
Learning to use software to facilitate the process
Understanding pain conservation and acceptance
Developing a new perspective on life events
Acquiring an understanding of the process of grief
Recognizing the blessings bestowed by God
Learning to not put oneself in pain while raising exceptional children
Finding inspiration by studying the story of Moses and Khizr
Distincting between tolerance and patience
Improving anger management skills
Developing a sense of positivity
Understanding the different types of angry people and managing anger
Developing existential capacity and assumptions
Identifying ways to develop patience, including changing attitudes towards life and recognizing that patience is a learnable skill
Studying holy verses on patience and its consequences, and engaging in Q&A.
Overall, the program aimed to promote patience among mothers of exceptional children through a combination of educational, spiritual and emotional tools.
Results
The research data was analyzed using single and multi-factor analysis of covariance, and the results indicate that the training of patience can have a positive effect on self-efficacy, change of attitude, failure, disappointment, shame, and patience of mothers of exceptional children.
Table 1. results of comparing two groups in self-efficacy and patience.
factor
Source for change
Sum of squares
Degree od freedom
Average sum of squares
F
P
Effect size
Self-effocacy
Pre-test
84/94
1
84/94
10/1
30/0
03/0
group
17/692
1
7/692
08/8
008/0
21/0
error
34/2483
29
63/85
total
81689
32
Pre-test
75/360
1
75/360
96/5
02/0
17/0
Patience
group
05/684
1
05/687
35/11
002/0
28/0
error
93/1754
29
51/60
total
256823
32
Based on the table provided, it is clear that there is a significant difference between the examination group, which received the training of patience, and the witness group, which did not receive training, in terms of self-efficacy and patience. Specifically, the examination group demonstrated higher self-efficacy and patience in the post-test phase compared to the pre-test phase, indicating that the training of patience has been effective in improving these outcomes. These findings suggest that the training of patience may be an effective intervention strategy to enhance the well-being of mothers of exceptional children.
Discussion
From the findings of this study, it is evident that training in patience can positively influence the self-efficacy, change of attitude, failure, disappointment, shame, and patience of mothers of exceptional children. Patience is an innate human trait that enables individuals to develop the ability to handle life pressures with resilience. The ability to defer one's own interests with the hope of attaining knowledge or a desirable outcome in the future is critical for personal growth and well-being. By improving their patience skills, mothers of exceptional children may be better equipped to handle the challenges of raising children with special needs.
Conclusion
The study showed significant differences in the self-efficacy, change of attitude, failure, disappointment, shame, and patience levels of mothers of children with exceptional needs between the examination and witness groups. As a result, it is recommended that counselors and psychologists consider incorporating patient training in the family education and group programs of mothers of children with exceptional needs to enhance their well-being.
Acknowledgements
We extend our gratitude to the mothers who participated in the study and provided valuable insights into the effect of patient training on their well-being. Their participation was crucial in helping us gather important data and make meaningful contributions to the field. We hope that this research can contribute to developing more effective interventions to support the needs of mothers of exceptional children.
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.