Abstract
Autism Spectrum Disorder is a condition that affects persons’ behaviour and social interactions. When children are diagnosed with Autism Spectrum Disorder, parents can experience pressure and stress. This condition can have a physiological impact on family members. The purpose of this study is to examine how Autism Spectrum Disorder affects the mental health of children and their parents and to determine specific factors that work as barriers for parents while seeking assistance in the United Kingdom. The qualitative systematic literature review of twenty articles was conducted to address the aim. The findings demonstrate that parents can suffer from anxiety, stress, depression, and changes in their physical health along with their children. Furthermore, access to care is limited for parents because of social isolation, stigma, financial issues, and the lack of education regarding the problem.
Introduction and Background
Introduction
Focusing on Autism Spectrum Disorder (ASD) in the United Kingdom, it is important to pay attention not only to the physical and psychological state of children who suffer from this disorder, as well as on their social adaptation, but also on the effects of ASD on parents of these children. Parents face many barriers and challenges when they interact with their children having ASD and seek support and assistance (Ekas, Pruitt & McKay 2016). Additionally, many parents are not satisfied with the care and help that are provided by healthcare professionals, authorities, or social workers (De-la-Iglesia & Olivar 2015). Being affected by stress associated with coping with ASD, both children and their parents experience certain problems. It is possible to speak about the physiological impact of ASD on children and their parents in the UK, and the detailed examination of this issue is required.
Background
The term Autism Spectrum Disorder or ASD covers many different conditions observed in children and adults that are associated with challenging social interactions and behaviours, as well as problems with communication and speech (De-la-Iglesia & Olivar 2015; Jang et al. 2011). In the UK, ASD has affected more than 700,000 people, and this number tends to increase (Crane et al. 2016). Therefore, it is possible to speak about ASD as a significant issue related to the public health. The problem is that ASD can have the physiological impact not only on children who suffer from this disorder but also on their mothers and fathers who interact with these youngsters (De-la-Iglesia & Olivar 2015; Ekas, Pruitt & McKay 2016; Falk, Norris & Quinn 2014; Jang et al. 2011).
However, in spite of the fact that some recent studies are focused on describing atmospheres in families with children having ASD and analysing parents’ experiences and possible challenges and psychological reactions to problems, there are still gaps in the literature covering the physiological impact of ASD on both children and parents with reference to their mental health. Furthermore, the limited research is provided in the context of the UK as the majority of studies on families with children with ASD were conducted in other countries (De-la-Iglesia & Olivar 2015; Ekas, Pruitt & McKay 2016; Falk, Norris & Quinn 2014). Therefore, it is important to discuss the physiological impact of ASD on the determined population in detail. Much attention should be paid to the fact that the experiences of not only children with ASD but also their parents living in the UK are examined with the help of this study.
The significance of this research is in the fact that it will address the gaps in the existing literature on the problem while focusing on the experiences and health of parents of children with ASD. This study will also discuss barriers to seeking assistance for persons with ASD in the UK. As a result, the findings of this research will contribute to the theory and literature on the impact of ASD on families and to the knowledge of the situation in the UK. The research will also contribute to practice through providing evidence-based recommendations.
Aim and Objectives
The aim of this qualitative review is to examine how ASD affects the mental health of children with the disorder, as well as their parents, and to determine specific factors that work as barriers for parents of children with ASD while seeking assistance and support of professionals in the UK.
The associated objectives are the following ones:
- To review the literature on the physiological impact of ASD on children and their parents with the focus on effects on the mental health.
- To review the literature on possible barriers experienced by parents of children with ASD while seeking assistance in the UK.
- To systematically review sources and synthesise the data to address the aim of this research.
Research Questions
The following questions are formulated to meet the aim and objectives of this study:
What are the effects of ASD on the mental health of children and their parents, and what is the link?
What are the factors that work as barriers for parents of children with ASD seeking assistance in the UK?
Literature Review
The literature on ASD discusses physiological and psychological or mental health conditions related to both children suffering from this disease and their parents. ASD in children is often associated with the development of such diseases as depression, anxiety, and obsessive compulsive disorder, which are the results of a certain physiological impact of this disorder (Lovell & Wetherell 2016). Children with ASD usually demonstrate uncooperative behaviours, or they can be hyperactive or suffer from aggressive and repetitive behaviours or frustration among other states. ASD can cause children to demonstrate uncontrolled body movements, disruptive behaviours, and even anger (Ekas, Pruitt & McKay 2016; Falk, Norris & Quinn 2014). As a result, these children often experience problems with cognitive functioning, social interaction, and communication. Studies indicate that these symptoms are often the result of physiological and mental processes affected by ASD, and the brain of these children functions differently (Salomone et al. 2014; Vasilopoulou & Nisbet 2016). Therefore, children with ASD represent a vulnerable group of patients who often suffer from stress, anxiety, social isolation, and the inability to describe and discuss the experienced problems and their symptoms.
Another group of studies is focused on discussing the mental health of parents of children with ASD. Researchers state that parents experience significant pressure every day because they learn how to cooperate with their children even when their behaviours are uncontrolled (Selman et al. 2017). According to Jones et al. (2014), parents can face problems at the stage of diagnosing ASD and after that because of the lack of social support and delays in required procedures. Furthermore, the problem is that many children from families with a low socioeconomic status remain underdiagnosed, which creates more challenges for their parents because they are deprived of opportunities to receive assistance and treatment required for their children (Kelly et al. 2015). Additionally, researchers state that the severity of ASD in children is correlated with stress and depression in parents (Langley, Totsika & Hastings 2017). When ASD is diagnosed in children, parents face problems associated with the lack of information, care, assistance, and support because they often feel depressed.
There is also evidence that effects of ASD on parents of children with this disorder also cause secondary effects on youngsters. The problem is that parents’ stress and depression often create inappropriate conditions for coping with children having ASD (Ekas, Pruitt & McKay 2016). There is also research that supports the idea that many parents of children with ASD do not receive adequate assistance of professionals to help them to overcome mental health problems and negative consequences of this disorder’s physiological impact (Falk, Norris & Quinn 2014; Pickles et al. 2016). This situation is also typical for the UK where the procedure of diagnosing ASD requires improvement, more costs are necessary to support families with children with this disorder, and more interventions should be proposed to address both youngsters and parents (Morris et al. 2016). The support of healthcare professionals, social workers, and authorities is important in this case because parents who receive assistance and care represent lower rates of stress.
Thus, the existing research supports the idea that youngsters with ASD and parents need to receive adequate assistance to cope with experienced mental health problems. However, in spite of the fact that there are many studies that discuss the health of children with ASD and their parents’ experiences, these studies are mainly related to the contexts other countries than the UK, and they do not provide the systematic analysis of factors associated with children’s and their families’ experiences in terms of social support and access to care among other aspects. These factors need to be discussed in this study.
Methodology
Approach
A qualitative methodology has been selected for this project with the focus on conducting a qualitative systematic literature review. This methodology is effective to provide the answers to the set research questions with reference to synthesising and analysing the literature that addresses problems identified in the questions. A qualitative systematic literature review is selected because it allows for conducting the controlled search for literature with the focus on the research questions for synthesising data effectively (Green, Johnson & Adams 2006). This structured literature review is more efficient than other types of reviews because all collected sources address certain criteria, and they are analysed in a systematic manner.
Data Collection and Information Sources
The following databases were searched to retrieve appropriate sources related to the topic of the study and collect relevant data: MEDLINE/PubMed, OVID Nursing, CINAHL, PsycINFO, and EBSCOHost. These databases provide a range of recent scholarly articles on medical and health promotion topics. The focus on these databases allowed for retrieving many articles that corresponded with the set eligibility criteria and could address the research questions.
Search Terms
To generate effective keywords and search terms, it was important to use the Index Medicus database for identifying medical subheadings (MeSH). The following search terms were selected for this study to be used while searching for information in databases: autism, Autism Spectrum Disorder, parents, physiological impact, mental health, stress, and depression. The search was restricted with reference to the period during which the selected articles were published: 2010-2018. The initial search allowed for retrieving studies, which were related to the first research question. The search was repeated with the help of Boolean operators available in the selected databases. The same procedure was repeated for the second research question using such search terms as autism, Autism Spectrum Disorder, parents, mental health, stress, barriers, and intervention. As a result, 512 articles were found to address both questions. An additional search was conducted via Google using the same search terms, and 18 articles were found for further review.
Study Selection: Inclusion and Exclusion Criteria
All retrieved articles were screened with the focus on their titles and abstracts to remove duplicates and exclude sources that do not address criteria. At the next stage, full texts of articles were reviewed to exclude those articles whose type and appropriateness were not determined with the help of abstracts. In this context, it is important to mention inclusion and exclusion criteria (eligibility) for sources in this project. Inclusion criteria are a) the reference of a study or evidence to the UK context; b) the reference of a study to the topic of this project and research questions. Exclusion criteria are a) inappropriate publication dates; b) irrelevant topics; c) inappropriate contexts. The final number of retrieved studies for the further review is 20 (Figure 1).
Thematic Synthesis
The process of evaluating collected data included three steps with the help of a procedure of thematic synthesis. During the first stage, all sources were reviewed to identify findings related to the research questions. At the second stage, studies were grouped according to the major themes associated with the set research questions (Green, Johnson & Adams 2006). During the final step, additional sub-themes were identified under each of the key themes.
Findings and Analysis
Twenty studies were included in this project for being reviewed and synthesised to find answers to two research questions. The focus was on selecting studies that were completed by the UK researchers, conducted in the UK, or involving UK citizens. Ten studies addressed issues associated with the first research question, and ten studies covered the issues related to the second research question.
What are the effects of ASD on the mental health of children and their parents, and what is the link?
The evidence table that was used to summarise the studies related to the first research question is provided as Table 1.
Table 1: Evidence Table for RQ1.
Mental Health of Children’s with ASD and the Atmosphere in a Family
Those children who are diagnosed with ASD often have associated mental health diseases and the intellectual disability. These children can demonstrate aggression, anger, hyperactivity, and other types of challenging behaviors and symptoms related to mental diseases (Chung et al. 2012). Kingston, Hibberd, and Ozsivadjian (2013) also agree that children with ASD are often diagnosed with psychiatric conditions. Those persons who interact with these children at home can report problems in communication, behavior, higher levels of anxiety, symptoms of obsessive compulsive disorder and other similar disorders in these children (Salomone et al. 2014). From this point, children are claimed to be highly influenced by their disorder that causes the development of associated mental health and psychophysiological problems.
Furthermore, the problem reported by researchers is that the life with these children creates a stressful atmosphere in a family, and all family members can have depressive symptoms and distress. ASD changes an atmosphere at home (Langley, Totsika & Hastings 2017; Lovell & Wetherell 2016). In their research, Lovell and Wetherell (2016) stated that ASD can negatively affect the mental health and emotional states of siblings in families with children having ASD. Cortisol levels and emotional reactions were measured for siblings and their mothers to evaluate the atmosphere in such families. The results indicated that stress, the feeling of hopelessness, and depression are typical of such families, and similar findings were reported by Langley, Totsika, and Hastings (2017). Family members are inclined to demonstrate psychological adjustment in spite of suffering from the situation.
Parents’ Mental Health: Stress, Depression, and Anxiety
The mental health of parents who have children with ASD is highly affected by this situation, and they often are diagnosed with continuous stress, depression of different severity levels, and anxiety. These parents develop specific adaptive coping strategies to address the situation in their families (Padden & James 2017). Researchers suggested that caregiving stress is common for parents with children having ASD because they need to solve a lot of daily problems associated with the disease of their children and provide effective decisions under stressful circumstances (Vasilopoulou & Nisbet 2016). Thus, Munroe, Hammond, and Cole (2016) stated that negative outcomes are observed because parents are not ready to care for children with ASD, and they need to cope with additional stress. As a result, anxiety disorders are typical of more than 50% of parents, and depression can be observed in more than 65% of parents (Kingston, Hibberd & Ozsivadjian 2013). The positive tendency reported in studies is that parents of children with ASD in the UK are inclined to seek support and assistance of professionals to cope with their health problems.
Physiological Impact of ASD, Support, and Access to Services
It is possible to identify a specific physiological impact of ASD in children not only on them but also on their parents. Children with ASD usually experience problems with adapting to social interactions, and they can experience chronic stress and have poor physical health because of the lack of activities. Moreover, researchers also reported that parents suffer from chronic stress and depression that weaken their nervous, immune, and cardiovascular systems, causing the development of different diseases (Padden & James 2017; Selman et al. 2017). Researchers receive these data with the help of measuring cortisol levels, blood pressure, alpha-amylase, and the heart rate (Padden & James 2017). As a result, the poor health of children with ASD and their parents is reported as a typical outcome of this condition.
Additionally, the psychophysiological state of family members depends on support they receive and their access to services. According to Selman et al. (2017), stereotyping, the lack of support, and social stigma are typically experienced by children with ASD and their parents, and this aspect also negatively affects their stress and depression levels. Preece and Trajkovski (2017) developed this idea stating: if parents have access to specific assistance, education, training, and additional resources provided by professionals, their levels of confidence and self-efficacy increase, as well as their life satisfaction. Therefore, psychological interventions are required not only for children with ASD but also for parents.
What are the factors that work as barriers for parents of children with ASD seeking assistance in the UK?
The evidence table that was utilised to summarise the studies related to the second research question is provided as Table 2.
Table 2: Evidence Table for RQ2.
Social Isolation and Stigma
The literature indicates that families with children having ASD often experience problems with adapting to social environments because of faced pressure, stigmatisation, and misunderstanding. Furthermore, parents can experience such barriers as their fear to take children with ASD in public places (Ryan 2010). Studies provide evidence to state that children with ASD and their parents are often socially isolated, their contacts with people become affected, and the causes of such behaviours are stereotypes regarding mental health adopted in society (Crane et al. 2016; Stuttard et al. 2014). Moreover, for immigrants in the UK, these stereotypes become significant barriers to receiving assistance and support (Morris et al. 2016; Pickles et al. 2016).
Diagnosis, Support, Assistance, and Education
Many parents are not satisfied with the process of diagnosing ASD in their children, and they report the lack of education, support, and consultation provided by healthcare professionals (Crane et al. 2016; Jones et al. 2014). In addition, those families who have a low socioeconomic status are more limited in their access to healthcare to diagnose ASD and receive appropriate assistance and treatment (Kelly et al. 2015). Thus, according to studies, parents of youngsters with ASD face such obstacles as delays in diagnosing the condition and treating it (Crane et al. 2016; Jones et al. 2014). However, even if a diagnosis is appropriate, parents do not receive enough assistance of healthcare providers and education on how to care for such children because of barriers associated with socioeconomic status, time, the lack of resources, and high costs.
Barriers to Changing Environments and Routines
Many resources that can help parents to interact with their children with ASD are available in the UK, but some parents are not aware of them or report barriers to accessing these services because of the issue of costs (Morris et al. 2016; Pickles et al. 2016). As a result, they cannot effectively change their daily routines to interact with children with ASD, and they lack required knowledge and advice (Pellicano, Dinsmore & Charman 2014). Thus, parents in the UK require accurate information regarding available clinical and counselling programmes, interventions, and services (Cadman et al. 2012; Pickles et al. 2016). A range of effective interventions are used in the country, but researchers accentuate that parents need to become aware of these services.
Limited Access to Care and Financial Issues
Researchers state that one of the key barriers to seeking help for families with children having ASD in the UK is their impossibility to participate in programmes and receive clinical assistance because of income status (Buescher et al. 2014; Kelly et al. 2015). Parents of children with ASD spend many financial resources to support their youngsters. They pay for special education services, medicines, supportive living tools, but the problem reported by Kelly et al. (2015) is that many families do not have enough resources to address needs of their children. Reasons include high costs of services for children with ASD, the lack of cost-efficient interventions, and the necessity of leaving jobs to care for their children (Buescher et al. 2014; Pellicano, Dinsmore & Charman 2014). The socioeconomic status of a family prevents children with ASD from getting necessary help.
Discussion
The present review has provided the systematic analysis of the synthesised literature on the physiological impact of ASD on children and parents with the focus on the mental health and barriers experienced by families in the UK. Therefore, the answer to the first research question that is found in the literature can be formulated the following way: those children who have ASD can suffer from the intellectual disability, high levels of aggression and anxiety, and obsessive compulsive disorder among other conditions, and their physical health is poorer (Chung et al. 2012; Salomone et al. 2014). Salomone et al.’s (2014) quantitative study is important to explain what emotional and behavioural difficulties children with ASD can experience, and this study allowed for understanding how mental health services can be effective to address the discussed conditions in the UK.
Moreover, parents are often diagnosed with stress, depression, and fatigue associated with decreased levels of cortisol and affected immune and cardiovascular systems (Kingston, Hibberd & Ozsivadjian 2013; Vasilopoulou & Nisbet 2016). In their qualitative systematic review, Vasilopoulou and Nisbet (2016) provided a large mass of evidence to state that the quality of parents’ life decreases significantly. Padden and James’s (2017) quantitative study is important for the analysis because it also provided evidence to state that there are physiological indicators of parents’ stress associated with children’s ASD. What is more important, the credibility of findings was also supported with reference to Selman et al.’s (2017) qualitative study involving 15 parents and Langley, Totsika, and Hastings’s (2017) quantitative study involving 146 parents.
Thus, effects of ASD on the mental health of both children and their parents are negative and often chronic in their nature. They cannot be appropriately addressed because of the link between children with ASD and their parents as caregivers. Munroe, Hammond, and Cole (2016) examined immigrant mothers’ perceptions, and they determined many psychological and social problems experienced by these mothers, but the study is limited to the findings related to immigrant families. Preece and Trajkovski (2017) conducted a comprehensive literature review to explain whether parent education can be effective to address the problem. However, other members of families also suffer from outcomes associated with ASD. In this context, the research by Lovell and Wetherell (2016) is extremely important because this quantitative study demonstrated how ASD influences siblings.
The reviewed literature has also provided the answer to the second research question. The factors that can be barriers for parents of children with ASD who seek assistance in the UK are the lack of social support and isolation, stigmatisation, stereotyping, the lack of knowledge, delays in diagnosing, the lack of accessible services and interventions, and financial issues or families’ socioeconomic status (Cadman et al. 2012; Pickles et al. 2016). It is discussed in many studies that parents of children with ASD lack required services and assistance in the UK because of many obstacles that can be associated with effects of the condition on parents’ mental health, their stress, inability to cope with the problem, and depression. Thus, in a qualitative study, Ryan (2010) found that social understanding and assistance are important for parents to cope with stress.
In other cases, diagnoses are given with delays, and parents’ chronic stress intensifies. Jones et al. (2014) and Crane et al. (2016) conducted quantitative studies to examine diagnosing ASD in the UK, and they found that delays are associated with problems in receiving effective care. Moreover, Kelly et al. (2015) also found that socioeconomic status could influence aspects of diagnosing ASD, and this finding is important to understand the overall situation in the UK in terms of barriers for parents.
Even if parents are ready to care for their children, they often lack information about available interventions and services. They are not aware of possibilities to receive assistance because of mistakes in the work of healthcare providers or social workers. Stuttard et al. (2014) studied available interventions for parents of children with ASD. Additionally, Morris et al. (2016) reviewed available resources for supporting patients with ASD in the UK, and this work is important because of identifying barriers that prevent families from accessing them.
Furthermore, even if parents are aware of effective interventions and programmes, they can be deprived of services because of their high costs or other limits in access because of their social and economic status, as it is in case of immigrants. Successfully referring to the experiences of 72 parents of children with ASD, Pellicano, Dinsmore, and Charman (2014) accentuated the importance of more research on ASD to provide families with more information. Furthermore, despite the fact that Buescher et al.’s (2014) work was a review, the researchers emphasised the problem of economic barriers for families with children with ASD. It is important to state that researchers agree that there are many resources for parents of children with ASD to provide required treatment, assistance, and support, but there are also limits in access to these services that need to be addressed.
Strengths and Limitations
Despite strengths of this study associated with providing a lot of evidence to examine the physiological impact of ASD not only on children but also parents in the United Kingdom, there are also limitations. Firstly, the selected literature was not evaluated in terms of the type of a research design used in a study. Thus, the works by Chung et al. (2012), Kingston, Hibberd, and Ozsivadjian (2013), Salomone et al. (2014), Jones et al. (2014), Stuttard et al. (2014), Kelly et al. (2015), Lovell and Wetherell (2016), Crane et al. (2016), Pickles et al. (2016), Langley, Totsika, and Hastings (2017), and Padden and James (2017) have strengths because they are quantitative studies allowing for generalisability of results. However, in spite of limitations associated with using qualitative studies, the works by Ryan (2010) and Munroe, Hammond, and Cole (2016) added to the in-depth understanding of the topic, as well as reviews by Vasilopoulou and Nisbet (2016) and Preece and Trajkovski (2017). Secondly, only the limited number of sources was included in a review that can be potentially extended while searching information in more databases.
Conclusion and Recommendations
This qualitative study based on conducting a systematic review of the literature has been aimed at examining the effects of ASD on the mental health of children and their parents, as well as at determining specific factors that can be barriers for parents to seeking assistance and support of professionals in the United Kingdom. This aim has been achieved, and the systematic analysis of twenty articles has provided the answers to the research question related to the aim. Children with ASD are at risk of developing more conditions, and their mental health and behaviour need to be actively monitored. The physiological impact of ASD on children includes changes in brain functions, children’s emotions, psychological state, cognitive development, and physical health. Moreover, the mental health of parents is also significantly affected because they often suffer from chronic stress, anxiety, depression, and weakened physical health. The analysis of the literature on the second question allows for concluding that parents in the United Kingdom often cannot provide adequate care and support for their children because they are not aware of available services, their socioeconomic status is low, and they suffer from social isolation.
It is also important to provide recommendations to address the problem discussed in the study with reference to the reviewed literature and made conclusions:
- Parents of children with ASD need to receive additional consultation and counselling when their children are first diagnosed with this disorder. Healthcare providers need to guarantee that these parents receive the updated information about services, programmes, ad interventions proposed in their region.
- Parents of children with ASD need to be monitored regarding their mental health along with their children, and they need to be provided with consultation and assistance when stress or depression can be observed.
- Authorities in the United Kingdom need to guarantee families with different incomes can have opportunities to receive support and assistance when they have children with ASD.
These recommendations can be used as implications for persons responsible for working with families having children with ASD to improve their experience and care in the UK.
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