NURSING DEPARTMENT, MEDICINE AND HEALTH COLLEGE
Lishui University, China FACULTY OF HEALTH AND OCCUPATIONAL STUDIES
Department of Caring Sciences
Parents’ experience of having a child with autism spectrum disorder A descriptive review
Chen Ting (Tia) Yuan Xinqian (Angel)
2020
Student thesis, Bachelor degree, 15 credits Nursing
Degree Thesis in Nursing Supervisor: Xu Linyan (Alisa) Examiner: Britt-Marie Sjölund, RN, PhD
Abstract
Background: The incidence of autism spectrum disorder (ASD) in children is increasing.
When a child is diagnosed with ASD, it is a huge test not only for the child but also for the parents. Focusing on the experiences of parents whose children have been diagnosed as ASD has important implications for how parents can better adapt to the disease and provide better care for their children.
Aim: To describe parents’ experience of having a child with autism spectrum disorder.
Design: A descriptive review of qualitative studies.
Method: All articles were searched in the database PubMed and Cinahl. Selected appropriate articles, compare all the results, and categorize the similarities and differences in the experience of parents raising children with ASD.
Results: A total of 10 articles were included in the review. Three themes were derived from the findings: 1) Changes in parents’ emotions; 2) Changes and adjustments in parents’ life; 3) Challenges and difficulties faced by parents. When a child was diagnosed with ASD, the parents’ lives changed. Parents have made many adjustments in their own lives to accommodate their children’ s illness. They tried to deal with ASD in different ways, but they found that there were many difficulties in the process.
Conclusions: When a child was diagnosed as ASD, it had a negative impact on their parents' lives and psychology. Parents were the primary caregivers of children. It can make a difference of how nurses helped parents. Nurses could pay attention to the changes of parents, provide support for parents, help parents adjust and cope with the disease, reduced parental anxiety. In addition, nurses could also provide professional knowledge and skills to guide parents to take better care of their children, which was beneficial to their children's recovery.
Key words: Autism spectrum disorder; Children; Experience; Parents
摘要：
背景：儿童自闭症发病率逐渐上升。当孩子被诊断为自闭症后，不仅对孩子自身，
对父母也是一个巨大的考验。关注自闭症孩子父母的经历，对如何帮助父母更好 适应疾病和为孩子提供更好的照顾具有重要的意义。
目的：描述父母抚养患有自闭症的孩子的经历。
设计：定性研究的描述性综述。
方法：所有文章都在数据库 PubMed 和 CINAHL 中搜索。所选的文章通过阅读分 析，比较所有的结果，并对父母抚养自闭症患儿经历的相似点和不同点进行分类。
结果：最后共有 10 篇文章被纳入综述。从研究结果中得出三个主题：1) 父母的 情绪的变化；2) 父母生活的变化和调整；3) 家长面临的挑战和困难。当一个孩 子被诊断为自闭症谱系障碍时，父母的生活就改变了。父母在自己的生活中做了 很多调整来适应孩子的疾病。他们试图用不同的方法来处理自闭症谱系障碍，但 是他们发现在这个过程中有很多困难。
结论：当一个孩子被诊断为自闭症谱系障碍时，这对他们父母的生活和心理产生 了负面影响。父母是儿童的主要照顾者，如何帮助父母起着至关重要的作用。关 注父母的变化，为父母提供支持，帮助父母调整和应对疾病，减少父母的焦虑。
此外，护士还可以提供专业知识和技能，指导父母更好地照顾他们的孩子，这有 利于他们的孩子疾病的恢复。
关键词: 自闭症；孩子；经历；父母
Content
1. Introduction ... 1
1.1 Background ... 1
1.2 Definition ... 1
1.2.1 Autism spectrum disorder ... 1
1.2.2 Children ... 1
1.2.3 Parents ... 1
1.3 The nurse’ s role ... 1
1.3.1 Nurse as a counsellor: ... 2
1.3.2 Nurse as an advocate: ... 2
1.3.3 Nurse as a leader: ... 2
1.4 Nursing theory ... 2
1.5 Earlier review ... 3
1.6 Problem statement ... 3
1.7 Aim and specific question ... 4
2. Method ... 4
2.1 Design... 4
2.2 Search strategy ... 4
2.3 Selection criteria ... 5
2.4 Selection process ... 5
2.5 Data analysis ... 6
2.6 Ethical considerations ... 7
3. Results ... 7
3.1 Changes in parents’ emotions ... 8
3.1.1 Worry ... 8
3.1.2 Tired ... 8
3.1.3 Loneliness and isolation ... 8
3.1.4 Sad ... 9
3.1.5 Shame ... 9
3.2 Changes and adjustments in parents' life ... 9
3.2.1 Parent’ s life changes ... 10
3.2.2 Enlarge parental responsibility ... 10
3.2.3 The growth of parents ... 11
3.3 Challenges and difficulties faced by parents ... 11
3.3.1 Lack of Knowledge and information about ASD ... 11
3.3.2 Lack of Social support ... 12
3.3.3 Challenge themselves ... 13
3.4 The chosen articles information ... 13
4. Discussion ... 14
4.1 Main result... 14
4.2 Results discussion ... 14
4.2.1 Coping with parents’ emotions ... 14
4.2.2 Parents different coping style ... 15
4.2.3 Support for parents ... 17
4.3 Methods discussion ... 18
4.4 Clinical implication for nursing ... 19
4.5 Suggestions for further research ... 19
5. Conclusions ... 20
Reference ... 21 APPENDIX 1
APPENDIX 2 APPENDIX 3
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1. Introduction
1.1 Background
It is estimated that one in 160 children worldwide is having autism spectrum disorder (ASD) (WHO, 2018). According to epidemiological studies in the past 50 years, the incidence of ASD is rising around the world (WHO, 2018). One of the characteristics of the child with ASD worldwide is that the mean age was 8.1 years (SD 3.6), ranged from 2.1 to 18.5 years (Daniels et al., 2017). ASD begins in childhood and tends to persist into adolescence and adulthood (WHO, 2018). Current researches indicate that a high proportion of ASD patients have unmet service needs throughout their life cycle (Shivers et al., 2019). On average, more than half of current reporting services were unreported (Shivers et al., 2019). In some current studies, we have obtained three aspects of the information of children with ASD. First, children with ASD have a relatively high risk of not reaching a healthy level (Karpur et al., 2016). Secondly, the families of children with ASD are mostly below the poverty line, and they are more likely to be unable to get adequate medical insurance than other children (Dixon et al, 2016). Socioeconomic status is one of the basic indicators of ASD, and there is a certain correlation between socioeconomic status and mental illness (Raina et al., 2015). The third group of children with ASD, only a small percentage of them received symptomatic medication, and the vast majority received behavioral therapy (Kogan, et al., 2016).
1.2 Definition
1.2.1 Autism spectrum disorder
Autism spectrum disorder (ASD) is a neurological developmental disorder, the basic performance of social interaction and communication disorders and restricted stereotyped behavior (APA, 2013). ASD occurs in early childhood, when interests are limited, repetitive, and stereotyped (Boshoff et al., 2018).
1.2.2 Children
Children are defined as people between the ages of 1 and 18 (Pillitteri, 2016).
1.2.3 Parents
Parents are persons of father and mother (Oxford, 2018). Author limited it to the both fathers and mothers of children with ASD ages 1 to 18.
1.3 The nurse’ s role
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When nurses provide care to patients, they assume many roles, often simultaneously. The role required at a given time depends on the patient’ s needs and specific aspects (Kozier et al., 2012).
1.3.1 Nurse as a counsellor:
The nurse can provide consultations for patients. Counseling is about helping patients recognize and deal with stress and social problems. It involves providing emotional, intellectual, and psychological support. (Kozier et al., 2012) Parents of children with ASD experience many social problems and suffer more stress than parents of other normal children. At this point, they sought help from nurses and asked questions.
The nurse will do her best to provide them with emotional and psychological support, and the nurse will act as a counselor.
1.3.2 Nurse as an advocate:
Advocacy is a key role for nurses. The nurse can represent the needs and desires of the patient and convey the patient’ s message to others. (Kozier et al., 2012) Nurses can convey health information and wishes of children with ASD to parents and help parents better understand and take care of autistic children.
1.3.3 Nurse as a leader:
Leaders influence others to achieve a specific goal together. Leader role can be used at different levels: individual patients, families, patient groups, etc.(Kozier et al., 2012) As leaders, nurses can guide parents to better understand and help children with ASD, reduce the pressure of parents, and influence parents to jointly achieve the goal of taking good care of children with ASD and improve their quality of life.
1.4 Nursing theory
Roy adaptation model theory would be used as the theoretical frame of reference in the planned literature review (Roy& Andrews, 1999). Roy had further defined adaptation model using in the twenty-first century. Roy believed that human was a whole adaptive system, and the process of human life was a process of constant adaptation to various stimuli of the internal and external environment. Roy believed that environment was composed of all internal and external stimuli of the human body. She defined environment as the combination of all circumstances, things and influencing factors surrounding and influencing the development and behavior of individuals or groups. Any change in the environment requires people to pay energy to adapt, which was a positive response to the changes in the internal and external environment. And she felt that health was not free from death, disease, misfortune and stress, but a capacity to cope with them, health
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was the coexistence of health and disease. The purpose of nursing is to promote and improve people’ s adaptability to suit for stimuli, so as to improve people’ s health (Roy&
Andrews, 1999). Child with autism spectrum disorders is a focus stimulus to parents The nurse can take countermeasures to control all kinds of stimuli brought by autistic children so that all the stimuli are within the parents’ adaptive range. It can also enhance parents’
ability to cope with stimuli, improve their adaptation level and enhance their tolerance to stimuli, so as to successfully cope with stimuli and promote health.
1.5 Earlier review
Because the prevalence of ASD is increasing, people became more and more interest in ASD, and there had been a lot of reviews in the past that described the experiences of parents having children with ASD. In the study of Boshoff, Gibbs, Phillips, Wiles and Porter (2018), it described the experience of parents advocating for children with ASD.
The result showed that advocacy was a parental coping strategy, which mainly showed the challenges and benefits of advocacy. Parents advocated to create a future for children, hoping that ASD can be understood by more and more people. In the review of Bonis (2016), it focused on the sources of stress for parents of children with ASD. The results mainly discussed the pressure sources of parents before, during and after diagnosis, and the social and economic pressure brought by children’ s ASD. It also talked about how did parents deal with the disease and support for ASD. In another review, it mainly described the experience of children with autism in the United States. The results showed the influence of children with autism on their parents and family life, as well as their parents’ adjustment process, and the social help and services they have received (Corcoran et al., 2015).
1.6 Problem statement
According to the statistical data, the percentage of children with autism is increasing. As a lifelong disease, family-centered care mode is the choice for more people. Parents are the primary caregivers of children and an important part of the family environment. Many studies have recognized the importance of the unique life experiences of parents with ASD. But authors found that there are some limitations. One of them just described the parents’ experience of children with ASD in the US which was too limited. Another study mainly described parents’ experience of advocating which is not comprehensive. The last one just showed that sources of stress of parent’s experience with ASD children. It could be another experience but not just stress. So the authors want to describe parents’
experience of raising autistic children without country boundary and all aspects of
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parenting experience for raising child with ASD. Parents of autistic children faced more difficulties than parents of normal children, and they need more attention and help.
Learning their experience, difficulties, nurses can have a more comprehensive understanding of the parents of children with ASD, and better help autistic children, provide more appropriate support for parents, and help autistic parents build good family relationships.
1.7 Aim and specific question
The aim of the review was to describe the experience of parents having children with autism by answering the following questions:
What is parents’ experience of having a child with autism spectrum disorder?
2. Method
2.1 Design
A descriptive review was conducted（Polit &Beck, 2017).
2.2 Search strategy
A certain number of articles could be found by searching in PubMed and Cinahl databases. Limitations was used to narrow down the numbers of articles. As shown in table 1. Search terms of “Autism Spectrum Disorders”, “Children”, “Parents”,
“Experiences” were used in PubMed. Search terms such as “children with autism spectrum disorder”, “parents or parent”, “experience or perception or attitudes or perspectives or feelings” were used in the Cinahl. When combined searching terms, Boolean terms and the index search term were retrieved from the MeSH and Cinahl titles.
This searching was restricted to papers that were published from January 2014 to December 2019. (See table 1 for details)
Table 1. Outcomes of database searches
Database limits and search date search term number of hits
possible articles (excluding doubles) Medline
Via Pubmed
5years, English, 2014---2019 2019.07.05
“Children”
(MeSH)
245461
Medline Via Pubmed
5years, English, 2015---2019 2019.07.05
“Autism Spectrum Disorders”
(MeSH)
9210
5 Medline
Via Pubmed
5years, English, 2014---2019 2019.07.05
“Parents” (MeSH) 26107
Medline Via Pubmed
5years, English, 2015---2019 2019.07.05
“Children”
(MeSH) AND
“Autism Spectrum Disorder” (MeSH) AND “Parents”
(MeSH) AND Experience
89 9
Medline Via Cinahl
English, 2014---2019 AB Abstract 2019.07.05
“children with autism spectrum disorder” AND
“parents OR parent” AND
“experiences OR perceptions OR Attitude OR views OR feelings”
242 20
Total:29
2.3 Selection criteria
The Inclusion criteria:
(1) Scientific articles which were qualitative.
(2) Articles about parents’ experience related to the aim (describing parents’ experience of having a child with autism spectrum disorders).
(3) Children with autism spectrum disorders and under 18 years old.
The Exclusion criteria:
(1) Quantitative articles or other literature reviews.
(2) ASD children older than 18 years old.
(3) Articles didn't describe parent’ s experience.
(4) Scientific articles described specific aspects of treatment.
2.4 Selection process
296 scientific articles were obtained from PubMed and Cinahl databases (eliminate duplicate articles). The titles and abstracts of the articles were read and the literature reviews and articles that did not serve the purpose of the research were screened out, 70
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articles were left. In 70 articles, the authors read the abstract and deleted the scientific articles that were quantitative, the study population did not meet the requirements and that the caregivers were not parents, then 29 articles were left. In the end, the authors carefully read the full text of 29 articles, then exclude the articles describing specific aspects of treatment and other things that were not related to parents’ upbringing experience, and finally 10 articles were included. (Fig1)
Fig1. The selection process of articles.
Records identified through PubMed
(n=242)
Additional records identified through
Cinahl (n=89)
Records after duplicates removed (n=296)
Records screened (n=70)
Records excluded (n = 226)
-Doesn’t meet the purpose of the study(n=196)
-Literature review(n=30)
Read abstract (n=29)
Records excluded (n=41)
-The children does not conform to his age (n=9)
-Quantitative article(n=18)
-Do not describe
parents’experience(n=14)
Full-text articles assessed for eligibility
(n=10)
Full-text articles excluded, with reasons
(n=19)
-Do not describe parents' upbringing experience(n=11) -Describe specific aspects of treatment(n=8)
Studies included in the review
(n=10)
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2.5 Data analysis
Articles included were read carefully, mainly on research findings. First, the parts that met the research purpose were marked with color pen, then the marked parts of each article were summarized. Their similarities and differences were classified, all of which were derived from the results of the paper. Through careful examination of the data, the important concepts generated by the authors are then given a label to form the basis of a category.(Polit et al., 2017) Table 2 summarized the article’s authors, year of publication, titles, design methods and samples, data collection methods, and data analysis methods.
Table 3 summarized the authors, objectives, and results of this review.
2.6 Ethical considerations
Authors read and commented on these articles objectively and did not let his or her personal views and attitudes affect the objectivity of the reading. The results were presented in their entirety and were not modified according to the author’ s wishes. No plagiarism was allowed in degree courses.
3. Results
The review were based on 10 qualitative articles. These 10 articles were all about parent’
experience of having a child with ASD. The themes and sub-themes of the results were presented in Table 2. Four themes were summarized as parent experience of having a child with ASD: 1) Changes in parents’ emotions; 2) Changes and adjustments in parents’
life; 3) Challenges and difficulties faced by parents.
Table 2 The themes and sub-themes of the results
Categories Sub-categories
Changes in parents’ emotions Worry Tired
Loneliness and isolation Sad
Shame
Changes and adjustments in parents' life
Parent’s life changes
Enlarge parental responsibility The growth of parents
Challenges and difficulties faced by parents
Lack of knowledge and information about ASD Lack of social support
Challenge themselves
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3.1 Changes in parents' emotions
3.1.1 Worry
Parents of children with ASD often felt that their children are forgotten by others. Mothers worried about their children’s future because of lacking relevant institutions: services for children with ASD were scared (Frye, 2016), So did father. Fathers worried about their children’s lives after losting their fathers or mothers, because their children would never be independent, their behavior would be excluded from the social environment (Loukisas
& Papoudi, 2016). They worried that their children would be isolated and excluded by extended family members and friends, so that they would not be able to enter public places. Naturally, children with ASD had less chance of getting married and succeeding in life than normal children (Manor-Binyamini, 2018). Faced with the challenges of exclusion, future economic status, emotional, and family cohesion, parents’ lack of ability to participate in any decision-making and other areas of daily life made them feel worried and powerless (Manor-Binyamini & Shoshana, 2018).
3.1.2 Tired
Parents described that they were under great pressure from their children’s inappropriate behavior (Manor-Binyamini et al., 2018). All parents stated that they were consciously trying to understand and feel their children’s emotions, adapt their behavior to their children’s needs (Dieleman et al., 2018). They also needed to readjust their working hours from full-time to part-time or unpaid leave (Llias et al., 2019). They felt exhausted whenever parents ended the day. It was a long process from the time a child was diagnosed as ASD (Loukisas et al., 2016). Parents reported such repetitive fatigue sometimes even made them feel bored (Cheuk et al., 2016). But as parents, they knew 3.1.3 Loneliness and isolation
The behavior of children with ASD was special and abnormal in a normal social environment, and parents could often read people’s inner rejection from their facial expressions (Llias et al., 2019). Parents said that they did not like this expression and did not like to see their children excluded by their peers, so they preferred to be isolated from friends and family. In Malaysia and Japan, the public knew little about ASD. Parents of sick children could easily be labeled as parents with bad parenting practices and behaviors. The temper of autistic children could be difficult to get along with. Even if parents explained and apologized for their children’s behavior, the public would still complained.(Frye, 2016) At the same time, caring for children with ASD costed parents
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most of their personal lives and required them to spend more time meeting the needs of their children (Manor-Binyamini et al., 2018). Therefore, parents reported that they would leave with the option of losing friends and social life and keeping distance from the community (Loukisas et al., 2016& Manor-Binyamini et al., 2018).
3.1.4 Sad
Parents stated that it was a sad experience for themselves. When parents realized that their children would lose their ideals and future, and when parents found their children rejected by family and friends, their sadness was out of control (Frye, 2016& Fernandez-Alcántara et al., 2016&Loukisas et al., 2016). In the Bedouin community, mothers were more grieving than fathers (Manor-Binyamini et al., 2018). In the Bedouin community, mothers of children reported that they were lacked the ability to participate in any decision-making and other areas of the day, and they never participated in the decision-making process (Manor-Binyamini et al., 2018). This exclusion was part of the normal behavior of their families, as well as the traditions of their local tribes and entire communities (Manor- Binyamini et al., 2018). Men in Bedouin communities had absolute decision-making power, leaving mothers unable to do things independently and dependent on man’s decisions. If they did not comply, they would face the breakup of their families (Manor- Binyamini et al., 2018). When their child was diagnosed as ASD, the mother may not even know what’ s going on and may even be the object of blame and shame (Manor- Binyamini et al., 2018). Bedouin mothers stated that there was nothing they could do about it. In this male-dominated society, mothers were sad and lonely (Manor-Binyamini et al., 2018).
3.1.5 Shame
Parents of children with ASD reported that they would face social stigma sometimes.
“Social stigma” could even affect their lives. In the case of public contacted with others, parents were always exposed to the cold eyes and derision of their children’s abnormal behaviors. One parent described of being humiliated by his boss again at work.(Llias et al., 2019) In the Bedouin community, mothers described that they were a form of double exclusion, or exclusion within exclusion (Manor-Binyamini et al., 2018). This exclusion existed in every aspect of family structure, society and daily life, which shamed them.
The father also could not avoid the psychological pressure. The news traveled quickly through the community, the man dominated the family, and the social environment shamed the children and the family.(Manor-Binyamini et al., 2018)
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3.2 Changes and adjustments in parents’ life
3.2.1 Parents’ life changes
ASD was a lifelong illness that forces family to make long-term plans to meet long-term challenges. “Oh my god, never had a rest...It was like a constant battle.” This was how a father feels. These challenges included their cognitive, emotional, daily lives and their overall life plan (Cheuk et al., 2016). Parents needed to limit themselves because children with ASD had specific needs and demands for adaptive support. As caring for children with ASD dominates parents’ lives, they rarely made time for hobbies, friends and interests.(Dieleman et al., 2018) Parental adjustments include finding funds for treatment which was not covered by insurance, meeting with teachers to make educational plans for children, transporting children for treatment, etc. Increasingly intensive treatment had forced parents to make professional sacrifices to care for their children.(Frye, 2016) Many parents needed to adjust their working hours or live apart from their families because of coping with the huge financial pressures of treatment. Raising an autistic child could affect their siblings in many ways. Parents stated that they had a hard time to allocate to meet the needs of other children, resulted in less attention for other children. At the same time, the bond between fathers and mothers had grown stronger and stronger as they struggle with ASD (Llias et al., 2019).
3.2.2 Enlarge parental responsibility
In the experience of caring for children with ASD, the responsibilities of parents were expanding (Llias et al., 2019). Parents described that being a parent, you would put the identity of parent in front of all identities (Cheuk et al., 2016). This was the obsession of parenthood. Parental responsibility may made them obsessed with very foolish things. As parents of children with ASD, they had their own obsession (Cheuk et al., 2016). This placed higher demand on the parents of children with ASD. Faced with their special behaviors, they needed to spend more energy. Sometimes they were not only parents, but also child therapists and advocaters. They must went beyond the traditional role of parents and tried to take on more dimensions, instead of therapists, educators, special educators, psychologists, speech therapists and other experts.(Loukisas et al., 2016) Parents stated that they were constantly changed their parenting strategies to accommodate children with ASD. They constantly improved their empathy, kept themselves closer to their child's thoughts, feelings and emotions, got their child to do what they love, and responded positively to every action of their child, made them feel safe and loved. Parents should also try to help their children increase their understanding of the world and strive
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to create an open space where autistic children can speak their minds with confidence.(Dieleman et al., 2018) It was the responsibility of parents to care for and protect their children, and parents of children with ASD had a responsibility to ensure that their children's actions did not inconvenience or harm others. As spouses, parents were obligated to take care of and support each other.(Foo et al., 2015)
3.2.3 The growth of parents
Parents described that when they received a diagnosis of ASD of their children, their expectations changed. Parents described about their children’ futures from the very beginning of their lives: they wanted them to join a hockey team, to become scientists, to get an offer from a great institution...but the diagnosis of ASD changed everything, shattered all their hopes for a bright future, and from there, they learned to lower their expectations for their children.(Dieleman et al., 2018) Parental growth was also reflected in changes in coping strategies. Many parents mentioned that using positive psychological strategies, but several opted for avoidant strategies. For example, when you were at a loss, you could choose to stand outside for a while to calm yourself down.(Dillon, 2015) Parents also shared their positive experiences in raising children with ASD: they began to enjoy the little things in life more, their value scales changed, they strengthened their spiritual beliefs, they valued family support more, and they developed greater patience (Fernandez-Alcántara et al., 2016). Such parenting experience made parents less likely to criticize others because they were good at seeing things from other people's perspective instead of being opinionated. Not only parents' tolerance of others and the social world expand, they would also begin to appreciate themselves. They were proud that they had raised an autistic child, and they began to realize how strong they could be, how couples could support each other and take on so many challenges together(Foo et al., 2015 & Llias et al., 2019). The process was gradual, with ups and downs, and took some time (Fernandez-Alcántara et al., 2016). Perhaps most parents were shaping their children’s futures, while their children were changing their parents and shaping their parents’ futures (Foo et al., 2015).
3.3 Challenges and difficulties faced by parents
3.3.1 Lack of Knowledge and information about ASD
In the Malaysian study, some parents (22.7 %) delayed treatment because of time, cultural beliefs and family opinions after parents first noticed their child's specific behavior (Llias et al., 2019). Family and friends around them and even pediatricians would tell them that
“he is normal” and that because of the lack of knowledge about ASD in family, parents
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and social settings, they did not take action at the first sign and symptom (Fernandez- Alcántara et al., 2016). Parents reported regretted their ignorance at the beginning of the diagnosis. The earlier they intervened, the more they learned and the better they could help their children improve. This lacked of knowledge extended not only to parents, but also to immediate and extended family member communities, as well as to society as a whole.(Llias et al., 2019) Mothers indicated that they did not have a very clear understanding of what ASD was (Loukisas et al., 2016). Even some fathers did not know the term of ASD.“I just think my kids are different,” they said (Manor-Binyamini, 2018). In fact, fathers and mothers were concerned about their children's development and the possibility of ASD intervention and action, and they tried to take the time to see a doctor, listened to information, and asked questions about their concerns (Frye, 2016 &
Manor-Binyamini, 2018 & Manor-Binyamini et al., 2018). Parents said that they ran into difficulties: there were no professionals in their communities or nearby cities, and they could not find special education professionals who knew about ASD. For parents in the Bedouin community, there's another major barrier: language (Manor-Binyamini, 2018&Manor-Binyamini et al., 2018). Their communities were short of professionals, let alone professionals who understood Arabic (Manor-Binyamini, 2018&Manor-Binyamini et al., 2018).
3.3.2 Lack of social support
The shortage of therapists was an ongoing problem, and the second was the lack of information, no specific information base to guide parents. Providing information was important to increase resources. Parents lacked the social support that the government can provide, such as intervention services and counselling support.(Foo et al., 2015) There was a lack of formal professional teams for ASD, including health care providers, teachers and therapists, who could develop plans to improve the condition of children (Dillon, 2015 & Frye, 2016 & Manor-Binyamini, 2018&Manor-Binyamini et al., 2018).
Parents often needed to seek professional and private services, but they stated that many additional services and treatments were expensive, and they were not always insured or paid for. Their lacked of financial support from the government made it necessary for families to find funds to cover these costs (Loukisas et al., 2016). Both formal and informal groups were good sources of social support. Informal groups included parents who had shared parenting experiences with children with ASD, gave them the opportunity to network with other parents to help them cope with it. Parents were less likely to have
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“two-way communication” with health professionals or aid-related organizations.(Llias et al., 2019)
3.3.3 Challenge themselves
Important areas of experience could be defined as challenges to parental needs. Most parents described that they were not confident in their abilities. Most parents of children with ASD experience reported being forced to“stick to a schedule,” and changing it could be painful.(Dieleman et al., 2018) This meant that parents need to limit their behavior and change their lives to avoid conflicts (Dillon, 2015). Once parents found themselves being unable to meet the expected timetable, parents began to question their ability to be a good mother or father (Dieleman et al., 2018). The parenting experience of parents had found that children’s interpersonal relationship were relatively unitary, and children usually could maintain a good relationship with one or the other parent, which made the relationship between children and their parents extreme (Dillon, 2015). It had also been found that mothers have more emotional disorders than fathers, and mothers tended to be more willing to accompany their children and try to cure them (Fernandez- Alcántara et al., 2016). Fathers, as heads of the household, had difficulty making decisions for their children. They did not know what was good for them and what they needed (Manor-Binyamini, 2018). The individual differences between fathers and mothers led to their differences in the face of parenting, which escalated into conflicts and then became factors affecting the relationship between husband and wife and family (Dieleman et al., 2018).
3.4 The chosen articles information
These ten articles were from eight countries: The United States (Cheuk et al., 2016; Frye, 2016), Belgium (Dieleman et al., 2018), The United Kingdom (Dillon, 2015), Spain (Fernandez-Alcántara et al., 2016), Singapore (Foo et al., 2015), Malaysia (Llias et al.,2019), Greece (Loukisas et al., 2016), Germany (Manor-Binyamini, 2018; Manor- Binyamini et al., 2018).
In five of the articles, the participants were fathers and mothers (Dieleman et al., 2018;
Dillon, 2015; Fernandez-Alcántara et al., 2016; Foo et al., 2015; Llias et al., 2019). In two of the articles, the participants were mothers (Loukisas et al., 2016; Manor-Binyamini et al., 2018). In the remaining three articles, the participants were fathers (Cheuk et al., 2016; Frye,2016; Manor-Binyamini, 2018).
In eight of the articles, semi-structured interviews guide with questions was used (Cheuk et al., 2016; Dieleman et al., 2018; Dillon, 2015; Fernandez-Alcántara et al., 2016; Foo
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et al., 2015; Foo et al., 2015; Manor-Binyamini, 2018; Manor-Binyamini et al., 2018).
One article conducted in-depth interviews with the parents (Llias et al., 2019). One article used blogs created by mothers of children in the autistic (Loukisas et al., 2016).
In all of the chosen articles, the interviews were recorded and transcribed verbatim (Cheuk et al., 2016; Dieleman et al., 2018; Dillon, 2015; Fernandez-Alcántara et al., 2016;
Foo et al., 2015; Foo et al., 2015; Manor-Binyamini, 2018; Manor-Binyamini et al., 2018;
Llias et al., 2019; Loukisas et al., 2016).
In all of the studies, the location for the data collection was not specified (Cheuk et al., 2016; Dieleman et al., 2018; Dillon, 2015; Fernandez-Alcántara et al., 2016; Foo et al., 2015; Foo et al., 2015; Manor-Binyamini, 2018; Manor-Binyamini et al., 2018; Llias et al., 2019; Loukisas et al., 2016).
4. Discussion
4.1 Main results
This review focused on the experience of a parent who had a child with ASD. Three themes were derived from the findings: 1) Changes in parents' emotions; 2) Changes and adjustments in parents' life; 3) Challenges and difficulties faced by parents. When a child was diagnosed with ASD, parents' lives were quietly transformed, they experienced emotional changes, and their lives were transformed in one way or another. In the face of these changes, parents made many adjustments in their own lives to accommodate their children's illnesses. They tried to deal with ASD in different ways, but they found that there were many difficulties in the process, such as lack of relevant information and professional, lack of social support and so on.
4.2 Results discussion
4.2.1 Changes in parents' emotions
When a child was diagnosed as ASD, parents experienced more negative emotions. They began to worry about their children’s future, their children's“differences” and their society's acceptance of them, plunging them into feelings of sadness, isolation and shame (Frye, 2016; Loukisas et al., 2016; Manor-Binyamini et al., 2018). In most countries there was a general lack of emotional support for parents in the medical system (Fernandez- Alcántara et al., 2016). This finding was similar with the Bonis’ s study. But in Bonis’ s article, the parents of children with ASD reported higher levels of stress, anxiety and depression than the parents having no children with ASD in the control group. Moreover,
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the relationship between the degree of disease and the stress of parents was shown. The parents of children with severe symptoms were more stressed, and their worries about their children’s future were more obvious. In DePape et al. (2015) study, the grief of parents of children with ASD was more pronounced at this stage after the child is diagnosed. They may be“relieved” after the diagnosis, but more sad than anxious before the diagnosis. In Schnabel et al. (2020) study, it was found that the age of the children had a certain influence on their parents’ anxiety, among which the parents of the older children with ASD were more anxious.
Emotional changes in the parents of children with ASD result from challenging behavior (Llias et al.,2019). This finding was similar with the Bonis’ s study. Parents of children with ASD had to invest a lot of time and money, made them feel stressed, as Corcoran et al. (2015) study suggests.
In the study, it was found that in non-western countries, because women tended to be in a socially disadvantaged position, mothers' emotional problems were more prominent (Manor-Binyamini et al., 2018). Bonis’ s study (2016) also compared the moods of fathers and mothers and found that mothers had higher levels of stress, anxiety and depression than fathers. But the differences in fathers' and mothers' moods in Bonis’ s study (2016) were related to the different coping styles that fathers and mothers chose.
Emotional care for parents is generally lacking in most countries' health systems (Fernandez-Alcántara et al., 2016). There was a general lack of emotional care for parents in most countries' health systems. Health care professionals should invest enough time in counseling, emotional support at the time of diagnosis, assist to address any questions that may arise about ASD (Lobar& Sandra L, 2015). Nurses need to target family- centered, consistent, holistic, compassionate, and culturally influenced care (Lobar et al., 2015).
In Roy’s adaptation model, the environment was made up of all stimuli inside and outside the human body, and any changes in the environment required people to pay energy to adapt (Roy, et al., 1999). A child diagnosed as ASD was an environmental stimulus to the parent. Parent’s emotional change was a response to this stimulus. This made the parents have a lot of psychological problems, which may affect their normal life, so the nurse should pay more attention to the psychological health of the parents, tried to do a good listener, to let parents talk to them, so as to help the parents to adjust their mood better, to better take care of their autistic children.
16 4.2.2 Changes and adjustments in parents' life
In this review when a child was diagnosed as ASD, parents tried many different parenting approaches to deal with the challenge (Dieleman et al., 2018). The negative behavior of children with ASD could lead to a sense of frustration in the parents, and the parents were driven by this sense of frustration to produce a severe response, which was a reactive control method (Dieleman et al., 2018). This finding was different with the Bonis’ s and DePape’ s study. Fathers would rather tend to use avoidance coping to avoid the stress of dealing with their children's challenging behavior. And in Bonis’ s study (2016), mothers often used emotions to cope and fight.
In this review,“typical parenting experiences” did not apply to children with ASD (Dieleman et al., 2018). Medical staff work together to ensure that the needs of children with ASD were respected and addressed, helping parents found creative solutions and created new parenting models, which was something caregivers need to explore (Wittling et al., 2018).
During treatment, parents often lost their own lives and those of their partners because they spent more time caring for children with ASD. A strained relationship with a child could affect a parent's happiness, marital relationships, and family functioning (Foo et al., 2015). This finding was similar to the Gibbin’ s and DePape’ s study. Partnerships and alliances between parents could erode the child's challenging behavior, and the accumulated stress can eventually lead to the deterioration of the marriage (Gibbin, 2016).
Divorce rates among parents of autistic children were higher than average (Gibbin, 2016).
Parents felt that continuing care for autistic children puts their marriages at risk of divorce (DePape, Lindsay, 2015).
There were also situations where the bond between partners was strengthened as parents care for children with ASD. Parents began to realize that this was their common challenge, and their sense of responsibility to their parents and spouse was stimulated, leading to a strong belief in facing difficulties and learning to appreciate their partner's personal strengths (Llias et al.,2019). This finding was similar to the Corcoran’ s and DePape’ s study. In Corcoran et al. (2015) article, in this common suffering, there were domestic partners who trust and support each other. ASD brought them closer to their spouse (DePape et al.,2015). They’ve changed as individuals. For example, gained more patience and tolerance (DePape et al.,2015).
Parents reported caring for children with ASD took up so much of parents' time that other children may be neglected (Llias et al.,2019). This finding was similar to the Gibbin’ s
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and DePape’ s study. In Gibbin’ s and DePape’ s study, parents said they were torn between children with ASD and other children. Siblings of children with ASD had said their hearts have been damaged and their health may be affected. In fact, parents and friends were estranged from their children's grandparents (Bonis, 2016).
In Roy’s adaptation, health and illness were two inevitable aspects of a person’s life.
When people were able to adapt to constant change, they can stay healthy. When a person's response was ineffective it can lead to illness (Roy, et al., 1999). The purpose of nursing was to promote adaptive responses (Roy, et al., 1999). In the process of taking care of children with ASD, parents may had a lot of invalid response, which may affect the parents’ health, so the nurse could tell parents to give some relevant knowledge of ASD, to help parents better understand ASD, so they knew how to take care of their children better, and better coordination of good life.
4.2.3 Challenges and difficulties faced by parents
During the treatment, many parents were found to face similar difficulties. Many parents pointed out that they were ignorant in the early stages of their child's diagnosis. In countries including Malaysia, Belgium, Athens, Germany, and Spain, justice was also ignorant and misunderstood about ASD. Ignorance led them to miss the best stage of their child's treatment (Llias et al., 2019; Loukisas et al., 2016; Manor-Binyamini, 2018;
Manor-Binyamini, 2018). This finding was similar to the Bonis’ s study. In Bonis’ s article, it was suggested that earlier diagnosis and earlier intervention were associated with better social interaction and communication, which could improve brain function and reduce the need for expensive child development services.
The lack of a formal professional team dedicated to ASD was a second problem for parents (Frye,2016). This finding was similar to the Bonis’ s study. In Bonis’ s article, parents also found it difficult to find a health care provider that was helpful, knowledgeable, qualified, able to assess ASD disease and understand the challenges involved, and able to care for children with ASD.
In fact, nurses’ understanding of ASD seems more incomplete (Corsano et al., 2019). For nurses, age, professional qualifications or general experience gained in specific work with autistic children was a key factor in caring for autistic children and may be more important than education level (Corsano et al., 2019). Advanced licensed nurse (aprn) was well suited to care for children with autism (Russell et al., 2016). The symbol of advanced nursing practice was the promotion of health and the multidimensional, holistic
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view of patient care (Russell et al., 2016). The training of pediatric nurses in ASD was a vast area of research that needs to be explored and praised (Corsano et al., 2019).
However, in some small language countries, parents were unable to obtain knowledge and information about ASD due to language barriers (Manor-Binyamini, 2018; Manor- Binyamini, 2018). In DePape et al. (2015) study, the importance of medical teamwork was emphasized because ineffective communication could lead parents to doubt whether health care professionals have the necessary expertise to care for their children. The understanding of the health caregiver was also important (Corcoran et al., 2015). Medical professionals lack the patience and understanding to deal with people, resulting in a lack of trust in the health caregiver among parents (Corcoran et al., 2015).
The lack of special education for autistic children and the high cost of private education services were another problem for parents. Similar result could be found in the Bonis (2016) and DePape et al. (2015). The high cost of treatment put pressure on parents.
In Roy’s adaptation, Roy believed that nursing was an applied discipline, which improved the overall adaptability of individuals or groups by promoting the interaction between people and the environment (Roy, et al., 1999). When the nurse understood the difficulties faced by the parents of autistic children, the nurse could help the parents accordingly, so that the parents could respond positively and had better adaptability. Ensuring that assistance to children with ASD was part of the goal of promoting quality care, with a high level of training and standards of care, a factor that can reduce hospital stay, thereby reducing costs and reducing financial pressure on parents (Corsano et al., 2019).
4.3 Methods discussion
This article had some strengths. The article was from eight countries, so the results of the article could be used universally. This review extracts what the author wants by reading articles relevant to the purpose of the study. The authors set exclusion criteria and inclusion criteria, and then logged into PubMed and Cinahl databases to search for articles that fit the research purpose. All articles are from both databases. According to Polit &
Beck (2017), the authors followed steps to prepare this review. This was the descriptive review about parents experience of having a child with ASD.
According to Polit’s study, the authors of this study adopted clear and specific inclusion and exclusion criteria, which enhanced the plasticity of the study (Polit & Beck, 2017).The authors searched two different databases, PubMed and CINAHL, to improve the credibility of the results, which may help to reinforce the current results. According to Polit &Beck (2017), qualitative articles are intended to describe a person’s experience
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of something. Therefore, it is very advantageous for the author to choose all articles as qualitative. To obtain more results relevant to the purpose of this study, the authors used grid terminology and free text search.
However, there are several limitations. First, the author browsed the title and abstract, found out the outline, and selected the articles related to the research purpose. Secondly, this study is a descriptive study. The author only used two databases for retrieval, with a small sample size and limited research scope. Third, in contrast, only 10 articles (published between January 2015 and December 2019) were included, and the authors were able to search for updated articles to obtain the latest and more comprehensive results, while only 5-year papers limited the results of previous studies. Fourth, the author believes that English is an inclusive standard, which may lead to the exclusion of other countries. Therefore, the outcome of the review may not convince everyone.
4.4 Clinical implication for nursing
In this review, three themes were summarized. After learning about parents’ experiences in raising autistic children, the authors summarized three aspects of changes in parents' emotions, changes and adjustments in parents' life, changes and adjustments in parents' life. As a result, parents’ emotions and lives changed when their children were diagnosed as ASD. Nurses could pay more attention to parents’ psychology, helped parents relax themselves, overcame negative emotions and met challenges. Besides, nurses could provide a lot of help to parents. On the one hand, nurses could provide parents with a variety of information about children with ASD through written materials and oral reports, thus increased their understanding of the disease. On the other hand, nurses could provide parents with more professional advice on how to take better care of their children.
Through this article, the author hoped to highlight parents’ experience in raising children with ASD, helped parents adapt to the disease, and provided advice on how to better care for sick children.
4.5 Suggestions for further research
Through data collection, the authors found a number of articles about the experiences of parents raising children with ASD. This article focused on the experience of parents after a child was diagnosed as ASD, but did not specify the stage of the parent’s experience.
The authors suggested that the paper should identify the stages that parents typically experience in children with ASD, such as before diagnosis, during diagnosis, and after diagnosis. In this way, nurses could provide more targeted measures to help parents take better care of their children
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5. Conclusions
When a child was diagnosed as ASD, it had a negative impact on their parents' lives and psychology. Parents were the primary caregivers of children. It can make a difference of how nurses helped parents. Nurses could pay attention to the changes of parents, provide support for parents, help parents adjust and cope with the disease, reduced parental anxiety. In addition, nurses could also provide professional knowledge and skills to guide parents to take better care of their children, which was beneficial to their children's recovery.
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