Volume 19, Issue 72 (8-2019)
refahj 2019, 19(72): 243-282 |
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khougar A, Asgharnejad A A, Ranjbar H, Lotfei M, Hakimshoushtari M. (2019). Lived Experience of the Social Suffering of the Parents with Autism Spectrum Disorder (ASD) Child. refahj. 19(72), 243-282. doi:10.29252/refahj.19.72.243
URL: http://refahj.uswr.ac.ir/article-1-3307-en.html
URL: http://refahj.uswr.ac.ir/article-1-3307-en.html
Abstract: (4982 Views)
Expended Abstract
Introduction: ASDs are classified as developmental neurological group disorders, which cause significant deficiencies in social interaction and communication. Restricted and repetitive behaviors are also present. Raising a child with ASD is a difficult experience, and it negatively affects both the child and his/her family. The parents of the child with ASD has are the ones who have the most interaction with him/her, and they suffer from ASDS challenges more than other relatives. Decreasing parenting efficiency and increasing their physical and psychiatric problems are some examples of those challenges. The studies reveal that parents and mothers in particular, experience higher levels of stress compared to the ones with normal children. For many years, most of the studies have focused on the effects of parents on children with ASDs, but recent research have concentrated on the effects of children with ASDs on their parents’ lives. The present research aims to discover the ASDs children’s parents’ sufferings and problems thorough the study of their lived experiences.
Method: The current study applies qualitative method with the thematic analysis approach. Purposive sampling is performed on parents of the children with autism spectrum. In this study, 13 interviews were conducted with parents, each of which had lasted between 45 to 70 minutes. The participants were four fathers and nine mothers with a child diagnosed with ASD. The data collection instrument was a semi-structured in depth interview. Data analysis process started from the first interview via MAXQDA software and coding was perfumed after each interview. Data were eventually analyzed by thematic analysis method. Finally, the outcomes of parents’ lived experiences were documented in the primary and secondary themes. In this study, four criteria of Guba and Lincoln were used to increase scientific accuracy.
Findings: The data were categorized into five main themes. The first category was on the diagnosis process. The sub-themes included pre-diagnosis confusion and the different medical diagnoses. The confounded parents were trying to understand the cause of their child’s abnormal behavior, which was the first hard and tough step of medical diagnose process. There is no specific reference available for parents to instruct them how to setup a health record and ease their journey. All the participants complained about the difficulty of that period. Some of them got the definitive diagnosis of autism after years. Different and incorrect diagnosis of the doctors and other professionals was another problem for parents, which prolonged the diagnostic process.
The second theme was on parents’ everyday problems. They hardly did their routine chores; suddenly, sleeping and eating turn into big problems as well. The intensity of those problems is a function of disorder severity. The physical problems of these children cause big challenges which negatively affect their parents.
The third theme was the family’s presence in the community, which had two sub-themes, lack of awareness and limited interactions. All parents believed that not only public awareness of autism was very low, but also there was no attempt to get to know the disorder. The lack of awareness eventually raises judgment or pity and compassion, which are not pleasant for parents. As a result, families decided to limit their public presence and getting reluctant to go out unless it was necessary. The parents’ problems with public presence do not stop here; traveling and using public transportation are also hard for them.
The next theme was on the support services, which is a hurdle for autistic families. This theme has two subsystems: weak support system and therapeutic problems. The whole 13 participants argued that there is no privileged government support for families with autistic children. Beside poor welfare services, children with ASD have no special insurance, and even those families with complementary health insurances cannot use them since they do not cover autism costs, including speech and occupational therapies. The scarcity of autism schools and poor condition of care centers are the other aspects of parents’ concerns.
The therapeutic problems were under the second sub-theme. There is no clinic or even a special section for such children. As parents claim, being in public hospitals is harder than private hospitals or clinics due to the large crowd, but financial and insurance policies do not make the things easier. Other sicknesses are harder to treat in these children; they also magnify autism related behaviors.
The last theme which causes the greatest suffering for the families is financial problems. The whole 13 participants in the study have been devastated by the costs and the hardships. Autism costs for families, even for those with high incomes are very frustrating. Most of those costs are spent on children’s occupational and speech therapies. Autism costs are not covered by insurance which intensifys all the mentioned problems. Some of the participants are no longer able to pay for those costs, and in spite of their inner desire they quit classes and occupational therapies.
Discussion: The research focused onstudying the parents lived experience of a child with ASDs. Thus, 13 parents participated in in-depth interviews. The results reveal that ASDs completely destroys the family routines and causes so many challenges and sufferings.
Apart from those problems that parents face during the diagnosis process, everyday problems, public presence, lack of supportive services, medical problems and severe financial problems cause suffering to those families. Although before the study it was predictable that there is quite a number of problems for parents with children in autism spectrum, no one expected this volume of suffer. The parents of the autistic children face many difficulties and challenges in almost every aspect of their lives. The improvement of these conditions requires complete transformation.
The interviews of this study were conducted at various locations٫ in some cases the location was selected by parents, and recorded with their consents. There were cases that recording was not allowed, instead, taking notes and writing was employed. All the names are aliases to protect the privacy of the contributors.
We sincerely appreciate all the parents who participated in the study, despite their problems. We also acknowledge the School of Behavioral Sciences and Mental Health and Autistic school of Ray for making the interviews possible.
Ethical Considerations
All ethical principles were considered in this article. All the names were pseudonyms to protect the privacy of the contributors.
Funding
there is no funding for this research
Authors’ contributions
All authors contributed in the research.
Conflicts of interest
The authors declared no conflict of interest
Acknowledgments
In this article, all rights relating to references are cited and resources are carefully
listed.
Introduction: ASDs are classified as developmental neurological group disorders, which cause significant deficiencies in social interaction and communication. Restricted and repetitive behaviors are also present. Raising a child with ASD is a difficult experience, and it negatively affects both the child and his/her family. The parents of the child with ASD has are the ones who have the most interaction with him/her, and they suffer from ASDS challenges more than other relatives. Decreasing parenting efficiency and increasing their physical and psychiatric problems are some examples of those challenges. The studies reveal that parents and mothers in particular, experience higher levels of stress compared to the ones with normal children. For many years, most of the studies have focused on the effects of parents on children with ASDs, but recent research have concentrated on the effects of children with ASDs on their parents’ lives. The present research aims to discover the ASDs children’s parents’ sufferings and problems thorough the study of their lived experiences.
Method: The current study applies qualitative method with the thematic analysis approach. Purposive sampling is performed on parents of the children with autism spectrum. In this study, 13 interviews were conducted with parents, each of which had lasted between 45 to 70 minutes. The participants were four fathers and nine mothers with a child diagnosed with ASD. The data collection instrument was a semi-structured in depth interview. Data analysis process started from the first interview via MAXQDA software and coding was perfumed after each interview. Data were eventually analyzed by thematic analysis method. Finally, the outcomes of parents’ lived experiences were documented in the primary and secondary themes. In this study, four criteria of Guba and Lincoln were used to increase scientific accuracy.
Findings: The data were categorized into five main themes. The first category was on the diagnosis process. The sub-themes included pre-diagnosis confusion and the different medical diagnoses. The confounded parents were trying to understand the cause of their child’s abnormal behavior, which was the first hard and tough step of medical diagnose process. There is no specific reference available for parents to instruct them how to setup a health record and ease their journey. All the participants complained about the difficulty of that period. Some of them got the definitive diagnosis of autism after years. Different and incorrect diagnosis of the doctors and other professionals was another problem for parents, which prolonged the diagnostic process.
The second theme was on parents’ everyday problems. They hardly did their routine chores; suddenly, sleeping and eating turn into big problems as well. The intensity of those problems is a function of disorder severity. The physical problems of these children cause big challenges which negatively affect their parents.
The third theme was the family’s presence in the community, which had two sub-themes, lack of awareness and limited interactions. All parents believed that not only public awareness of autism was very low, but also there was no attempt to get to know the disorder. The lack of awareness eventually raises judgment or pity and compassion, which are not pleasant for parents. As a result, families decided to limit their public presence and getting reluctant to go out unless it was necessary. The parents’ problems with public presence do not stop here; traveling and using public transportation are also hard for them.
The next theme was on the support services, which is a hurdle for autistic families. This theme has two subsystems: weak support system and therapeutic problems. The whole 13 participants argued that there is no privileged government support for families with autistic children. Beside poor welfare services, children with ASD have no special insurance, and even those families with complementary health insurances cannot use them since they do not cover autism costs, including speech and occupational therapies. The scarcity of autism schools and poor condition of care centers are the other aspects of parents’ concerns.
The therapeutic problems were under the second sub-theme. There is no clinic or even a special section for such children. As parents claim, being in public hospitals is harder than private hospitals or clinics due to the large crowd, but financial and insurance policies do not make the things easier. Other sicknesses are harder to treat in these children; they also magnify autism related behaviors.
The last theme which causes the greatest suffering for the families is financial problems. The whole 13 participants in the study have been devastated by the costs and the hardships. Autism costs for families, even for those with high incomes are very frustrating. Most of those costs are spent on children’s occupational and speech therapies. Autism costs are not covered by insurance which intensifys all the mentioned problems. Some of the participants are no longer able to pay for those costs, and in spite of their inner desire they quit classes and occupational therapies.
Discussion: The research focused onstudying the parents lived experience of a child with ASDs. Thus, 13 parents participated in in-depth interviews. The results reveal that ASDs completely destroys the family routines and causes so many challenges and sufferings.
Apart from those problems that parents face during the diagnosis process, everyday problems, public presence, lack of supportive services, medical problems and severe financial problems cause suffering to those families. Although before the study it was predictable that there is quite a number of problems for parents with children in autism spectrum, no one expected this volume of suffer. The parents of the autistic children face many difficulties and challenges in almost every aspect of their lives. The improvement of these conditions requires complete transformation.
The interviews of this study were conducted at various locations٫ in some cases the location was selected by parents, and recorded with their consents. There were cases that recording was not allowed, instead, taking notes and writing was employed. All the names are aliases to protect the privacy of the contributors.
We sincerely appreciate all the parents who participated in the study, despite their problems. We also acknowledge the School of Behavioral Sciences and Mental Health and Autistic school of Ray for making the interviews possible.
Ethical Considerations
All ethical principles were considered in this article. All the names were pseudonyms to protect the privacy of the contributors.
Funding
there is no funding for this research
Authors’ contributions
All authors contributed in the research.
Conflicts of interest
The authors declared no conflict of interest
Acknowledgments
In this article, all rights relating to references are cited and resources are carefully
listed.
Type of Study: orginal |
Received: 2019/01/5 | Accepted: 2019/05/20 | Published: 2019/08/17
Received: 2019/01/5 | Accepted: 2019/05/20 | Published: 2019/08/17
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