|Year : 2017 | Volume
| Issue : 3 | Page : 120-129
Challenges and adjustments of mothers having children with autism
Tarek E.I Omar1, Wafaa M Ahmed2, Nehad S Basiouny2
1 Department of Pediatrics, Faculty of Medicine, Alexandria University, Alexandria, Egypt
2 Department of Pediatric Nursing, Faculty of Nursing, Alexandria University, Alexandria, Egypt
|Date of Submission||01-Nov-2017|
|Date of Acceptance||09-Jan-2018|
|Date of Web Publication||20-Apr-2018|
Nehad S Basiouny
55 Port Saied Street, El-Shatby, Alexandria 01666
Source of Support: None, Conflict of Interest: None
Background Children with autism and their families especially their mothers face numerous and pervasive challenges. In addition to the expected concerns with behavior, communication, and morbidities, mothers expressed deep apprehension about their child’s isolation and meaningful integration into daily life. Difficulties to access a quality care, financial burden, issues of adulthood, and their child’s challenging behaviors may produce significant stressors to mothers. Healthcare providers should take these challenges into consideration when providing care to those children and their mothers.
Aim The aim of this study was to assess the challenges and adjustments of mothers having children with autism.
Patients and methods A convenient sample of 76 mothers who have children with autism represented the participants. They were recruited from the Neurological Outpatient Clinic of Alexandria University Specialized Children’s Hospital at Smouha, Egypt. Three tools were used to collect the data as: (i) Mothers’ Sociodemographic Data Interview Schedule, (b) Stressors of Mothers who have Children with Autism Interview Schedule 3. Parent and Family Adjustment Scale.
Results Overall, 71.4% of the mothers who were in the age 40 to <50 years had moderate stressors percent score. More than half of mothers sometimes had feelings of anger and nervousness. Furthermore, they had anhedonia and were unable to do anything alone. There was a statistically significant difference between mothers’ total percent score of stressors and their adjustment regarding psychological, social, and management-related stressors.
Conclusion Mothers who have children with autism were confronted with multiple stressors. The most perceived stressors were physical, psychological, financial, community-related, and management-related stressors followed by social and marital stressors. Adjustment pattern were affected by various factors, such as mother’s age, social support, and family income related to employment of mothers.
Recommendations Regular periodic meetings should be conducted between mothers and hospital personnel to promote proper communication.
Keywords: adjustment, autism, challenges, stressors
|How to cite this article:|
Omar TE, Ahmed WM, Basiouny NS. Challenges and adjustments of mothers having children with autism. Alex J Pediatr 2017;30:120-9
| Introduction|| |
Autism is a complex neurological disorder that affects brain function, which causes impairment in multiple areas of development including social interaction, communication, and behavior. Typically it appears within the first 3 years of life. It is caused by a number of different known and unknown biologically based brain dysfunctions that affect the developing brain’s ability to handle information. Research suggests that both genes and environment play important roles in causing autism .
Most recent statistics from the Center for Disease Control predict one in 150 children will be diagnosed with autism spectrum disorder (ASD), which is severe enough that it will disrupt their everyday lives. Although it has been described as an epidemic, autism is neither contagious nor a disease .
Autism is a lifelong disability that affects not only the individual but the family as well. Although society has gained knowledge related to autism in the last 20 years, the behaviors exhibited by individuals with autism may appear odd, threatening, and unacceptable in social situations. The child may regress socially, appearing to lose interest in the world around him, and develop difficulties in learning new skills .
Parenting a child with a developmental disability is an exhausting task especially for mothers as they are more involved with caregiving . Parenting a child with autism can be challenging and increases parental stress . Therefore, healthcare providers who work with mothers of children with autism should be aware of the typical stressors these parents face and the coping strategies that may be effective for each family unit .
Furthermore, families with children with autism experience a variety of difficulties that range from the affected individual’s challenging behaviors and health issues to factors that put strain on the family, including providing for a child’s everyday needs, access to care, financial burden, and worrying about the future. Understanding the needs of the families will help researchers develop studies that are responsive to families and improve recruitment and retention efforts ,,.
Nurses play a significant role in the care of the child with autism in each of the three specific areas of concern: the child with autism, the parent who experiences stress and/or stress-related illness, and the family support network. The nurse may be involved in either a primary care setting such as a professional-care office, acute care settings such as hospitals, or educational settings as the school nurse .
Therefore, nurses should be actively involved in the process of early diagnosis of autism and intervention. Nurses can play a valuable role by directing the family to behavioral services, specialists in autism, and therapists who are well versed in ASD. Pediatricians and nurses should listen and act upon parents’ concerns about their child’s communication limitations, play, and behavior problems by completing additional testing that could provide early diagnosis of autism. Parents expect from the pediatric nurses to be informed about interventions of therapy and treatment programs that are available for their child .
| Aim|| |
The aim of this study was to assess the following:
- The challenges facing the mothers who have children with autism.
- The adjustments carried out by the family to overcome the problems of autism.
| Patients and methods|| |
It is a descriptive study.
The study was carried out in the Neurological Outpatient Clinic of the Specialized Children’s Smouha University Hospital at Alexandria, Egypt, from January to April 2017.
All available mothers who attended the previous setting and fulfilled the following criteria were included in the study.
The following were the inclusion criteria:
- Mothers who have children with ASD (diagnosed by the pediatric neurologists).
- Age of children ranged from 5 to 12 years.
- Children have only autism without other disorders.
Three tools were used to collect the necessary data:
- Tool I: Mothers’ Sociodemographic Data Interview Schedule: This tool was developed by the researcher after reviewing literature. It included two parts:
- Part 1: Data related to the child, such as age, sex, and child order.
- Part 2: Mothers’ sociodemographic data, such as age, level of education, and occupation.
- Tool II: Stressors of Mothers Having Children with Autism Interview Schedule: It was developed by the researcher based on the review of related literature to assess the effect of having children with autism on mothers as a result of stress. It consists of 38 items and measures six domains:
- Physical stressors (three items) such as exhaustion and fatigue owing to bringing the child to the hospital and sleeping disturbance. It also includes exhaustion from frequently waking up at night to check the child’s status and satisfy his/her needs, sleeping disturbance, and exhaustion from frequently taking the child for follow-up to hospital.
- Psychological stressors (nine items) such as feeling that day is heavy and long, guilt feeling, anger and nervousness, worry and fear without cause, sadness and want to cry, anhedonia, inability to do anything alone, embarrassment, and taking care of the child like a machine without feeling.
- Social stressors (nine items) such as siblings’ sadness because of their brother/sister suffering, siblings’ sadness because of lack of visits and social relations, siblings’ jealousy owing to extra care provided to the sick child, refusal of family members to deal with the child, lack of social visits to relatives and friends, lack of social and recreational activities, negative feedback from others, bad effect of child’s status on mental and physical activity at work, and conflict between work time and child’s follow-up.
- Financial and community resources-related stressors (four items) such as high cost of regular follow-up, high cost of medication, lack of resources and information that help in child’s status, and lack or unavailability of services that community introduce to help in child’s status.
- Marital stressors (six items) such as bad relationship with husband, husband is not sympathetic, husband does not help in caring for the child, being blamed for child’s status by husband, and husband stays out of home for a long time and difficulty in discussing child’s state with husband.
- Management-related stressors (seven items) such as repetition of child admission to hospital, being with child during medical examination and diagnostic tests, unsatisfactory results of child’s diagnostic tests, lack of nurse’s interest in giving opportunity to express feeling, lack of doctor’s interest in giving information and reassurance about child’s status, uncertainty about treatment outcome, and seeing child in pain as a result of injections.
- The items for all subscales were rated in a three-point Likert scale , as often , sometimes , and rarely .
- Tool III: Parent and Family Adjustment Scale: It was developed by Sanders et al.  and designed to measure parent functioning and adjustment to various types of physical, emotional, and social stressors. It was translated to Arabic language. The scale was applied after its adaptation and modification to the Egyptian culture by the researcher. It consists of 20 statements, for example, giving child reward for behaving well, feeling stressed or worried, feeling satisfied with life, and being proud of the child. The items of the scale were written in a four-point Likert scale as not at all (0), sometime (1) good part of time (2), and most of time (3).
| Methods|| |
- An official letter was sent from the Faculty of Nursing, Alexandria University, Egypt, to directors of Smouha Hospital to obtain their approval to collect the data and facilitate the research implementation.
- Tools I and II were developed by the researcher after thorough review of literature. Tool III was adopted, translated, and modified by the researcher.
- Tools were submitted to a jury of five experts in the pediatric and psychiatric nursing fields for content validity. The validity was 93.0% for tool I and 95.0% for tool II.
- Reliability of tools was asserted using Cronbach’s coefficient α, and it was 0.831 for tool I and 0.852 for tool II.
- A pilot study was carried out on 10 mothers to ascertain the feasibility and applicability of tools and time needed. Necessary modifications were done. Those mothers were excluded from the study participants.
- Every mother was interviewed individually to collect the necessary data while attending with her child in the outpatient clinics.
- The duration of each interview lasted from 20 to 30 min.
- The total number of mothers at the beginning of the study was 100 mothers, and then 24 mothers were excluded owing to difficulty to complete the interview questionnaire.
- Data were collected over 3-month period extending from January 2017 to April 2017.
- Written consents of parents were obtained after explaining the aim and nature of the study.
- Parents were ascertained about confidentiality of their children data.
- They had the right to withdraw from the study at any time.
- Privacy was considered.
The raw data were coded and entered into SPSS system files (SPSS package version 20, Windows XP/Vista/7, IBM publisher, USA). The given graphs were constructed using Microsoft Excel Software.
The score % of knowledge was then transformed into categories as the following:
- Low degree: for those who had score% of less than 50% of the maximum score.
- Moderate degree: for those who had score% from 50 to less than 75% of the maximum score.
- High degree: for those who had score% of at least 75% of the maximum score.
Handling and analysis of data
The raw data were coded and entered into SPSS system files (SPSS package, version 18). Analysis and interpretation of data were conducted.
The following statistical measures were used:
- Descriptive statistics including frequency, distribution, mean, and SD were used to describe different characteristics.
- Kolmogorov-Smirnov test was used to examine the normality of data distribution.
- Univariate analyses including χ2-test and Monte Carlo test were used to test the significance of results of qualitative variables.
- Linear correlation was conducted to show correlation between scores of parent and family adjustment and stressors score experienced by the studied mothers with autistic children using Pearson’s correlation coefficient.
- The significance of the results was at the 5% level of significance.
| Results|| |
The results of the current study are presented under the following parts:
- Part I: Sociodemographic characteristics of mothers and their children.
- Part II: Percent distribution of various stressors perceived by mothers [Table 3] and [Table 4].
- Part III: Percent distribution of adjustment patterns adopted by mothers [Table 5].
- Part IV: [Table 6],[Table 7],[Table 8]
- Relation between mothers’ mean percent score of stressors and their sociodemographic characteristics.
- Relation between mothers’ adjustment patterns and their sociodemographic characteristics.
- Relation between various types of stressors perceived by mothers and their adjustment patterns.
Part I: Sociodemographic characteristics of mothers who have children with autism.
Sociodemographic characteristics of mothers who have children with autism are illustrated in [Table 1], showing age of the mothers, occupation, and education.
|Table 1 Sociodemographic characteristics of mothers who have children with autism|
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[Table 2] shows characteristics of children with autism regarding age, sex, order, and number of siblings.
[Table 3] shows the perceived stressors by the mothers regarding physical, psychological, social, financial, marital, and management-related stressors. The mothers answered by sometimes, often, and rarely.
|Table 3 Percent distribution of stressors perceived by mothers of autistic children|
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[Table 4] shows the mean percent scores of stressors perceived by mothers. Mothers reported high and moderate degrees of stressors from different sources. The most common stressors perceived by all mothers were financial stressors (100%) as shown by the highest stressors mean percent score (89.7±8.0). Moderate stressors percent score perceived by mothers were physical, social, and management-related stressors (50, 53.9 and 65.8%, respectively) with mean percent scores of 70.8±17.3, 58.9±17.5, and 63.4±12.6, respectively.
|Table 4 Mean percent scores of stressors perceived by mothers of autistic children|
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[Table 5] represents the adjustment patterns adopted by mothers of autistic children. Nearly two-thirds of mothers mentioned that their children did not do what they were told to do, get angry with their children when they misbehave, and they gave their children what they want when they get angry or upset sometime as a way of adjustment (63.2, 64.5, and 63.2%, respectively). One-third of mothers (31.6%) reported that they make their children apologize for misbehaving, tell their children to stop as soon as they notice them misbehaving, and they gave their children attention (such as hug, wink, smile, or kiss) when they behave well.
|Table 5 Percent distribution of adjustment patterns adopted by mothers of children with autism|
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[Table 6] shows the relation between mothers’ stressors and their sociodemographic characteristics. There were no statistical significant relation between mothers’ stressors and their sociodemographic characteristics.
|Table 6 elation between mothers’ stressors and their sociodemographic characteristics|
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[Table 7] shows the relation between mothers’ adjustment and their sociodemographic characteristics. There was a statistically significant relation found between mothers’ adjustment and their sociodemographic characteristics regarding child birth order and number of siblings (P=0.050 and P<0.0001, respectively).
|Table 7 Relation between mothers’ adjustment and their sociodemographic characteristics|
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[Table 8] shows the relation between various types of stressors perceived by mothers and their adjustment patterns. Negative significant relation was found between mothers’ total percent score of stressors and their adjustment patterns regarding psychological, social, and stressors related to adjustment management (P=0.0001 for each).
|Table 8 Relation between various types of stressors perceived by the mothers and their adjustment patterns|
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| Discussion|| |
The care of children with ASD is often demanding expensive costs on families, education, and healthcare systems . Having child with autism not only has divesting consequences for the individual child, but it also influences the entire family including siblings .
The current study showed that mothers who have children with autism face many stressors. The most common stressors that mothers faced were physical stressors ([Table 3]). These findings may be related to increased caregiving demands of the affected child as more than half of mothers in the present study were exhausted from frequent waking up at night to satisfy child’s needs and frequent child’s follow-up care ([Table 3] and [Table 4]).
Regarding psychological stressors, present study revealed that more than half of mothers sometimes had feelings of sadness, worry, fear, anger, nervousness, anhedonia, and unable to do anything alone ([Table 3] and [Table 4]). These feelings may be related to the loss of the imagined healthy child that they dreamed of, uncertainty about child’s future, and fear of the possibility of the potential loss. Similar findings were reported by Boyd  and Aite et al.  who stated that all mothers reported sense of sadness, anger, and worry when knowing that their children have chronic disease. Cohn  and Carey et al.  also reported that mothers of child with autism experience psychological distress owing to uncertainty and fear from their child’s future, and they constantly live with the anticipation of child’s complication and death.
With respect to social stressors in the current study, nearly half or more than half of mothers were upset from lack of social visits to family and friends, lack of recreational activities, and bad effect of child’s status on mental and physical activity of their work ([Table 3] and [Table 4]). This could be explained by the fact that more than half of mothers had to stay indoors and could not get out owing to seriousness of their child’s status, being ashamed or embarrassed, lack of money, and customs or traditional constraints. This is in line with Rosenthal et al.  and Davis  who found that parents may feel socially isolated and stigmatized because of child’s status. Furthermore, Chibbaro  found that others’ negative responses to the disfigurement may serve to isolate the family at a time when support is greatly needed. Johnson and Deitz  found that mothers of children with a physical handicaps or disfigurements had difficulties in leaving the house to participate or engage in social activities. They also hypothesized that this lack of social activity was because of the demand that was placed on the mother to care for the sick child, society’s stigma of the handicapped, and negative behavioral reactions of others .
[Table 3] illustrated also that more than half of mothers sometimes believed that siblings of children with autism were sad and jealous because the affected children received extra care provided to them. This is in accordance with Williams  and Fisman et al.  who found that parental distress may be correlated to maladjustment in siblings of chronically ill children. Lamb  and Barlow  also found that siblings of chronically ill children may find themselves receiving less time and attention from their parents and may manifest themselves in a variety of ways, including anxiety, withdrawal, problems at school, and jealousy.
The highly perceived stressors among mothers were financial and community-related stressors ([Table 3] and [Table 4]). High cost of regular follow-up and medication were the most perceived financial and community stressors. This may be related to low living standard as large proportion of mothers were housewives and had insufficient income. Hence, financial stressors increased significantly with insufficient income. In the same line, Lawoko and Soares  found that parents of children with chronic diseases had greater financial problems as those parents have more expenses/costs than parents of healthy children. Farsi et al.  added that families of children with genetic disorders experience additional stress related to specific challenges such financial burdens related to medical needs and decreased parent income because one parent may need to stay at home to care for the child. Thus, the general financial instability among families of child with autism together with the additional financial problems to which parents are subjected may explain the higher levels of distress among mothers of child with autism.
Lack of resources and unavailability of community services were perceived as community-related stressors in the current study ([Table 3] and [Table 4]). This could be explained by the fact that more than half of the mothers were illiterate, and they had lack of awareness about availability of community services for their autistic children . It is worth noting that mothers were stressed because of the extensive efforts necessary to locate services outside their rural communities and the lengthy travel that requires additional costs.
With respect to management-related stressors, the results of the present study showed that more than half of mothers were stressed owing to uncertainty about treatment outcome, being with the infant during medical examination and diagnostic tests, unsatisfactory results of these tests, and seeing him/her in pain ([Table 3]). This is supported by Griffin  who reported that parents of children with chronic diseases have many worries about management, including concern about the medical treatment of their children, the expected course of illness, prognosis, and eventual quality of life. In the same line, Mazaheri  reported that the mothers of children with chronic diseases had problems not with the severity of disease only but with uncertainty about the future, the cure plan, and the treatment outcome. In addition, many studies cited that families of critically ill children face specific stressors such as painful or stressful procedures, seeing child frightened or in pain, and not being able to be with their crying child ,,.
There are many factors that affect mothers’ perception of social and marital stressors. Some of these factors are advanced maternal age and social support. Concerning the relation between stressors and mothers’ age, it is clear that older mothers in the age group from 40 to 50 years experienced moderate stress as well as moderate adjustment score related to their children’s disease more than younger age groups ([Table 6] and [Table 7]). This may be owing to the fact that mothers in this age experience role strain of assuming many roles in life such as responsibilities toward their other children discipline, their elder parents andhusbands in addition to the care provided to the sick child. This is supported by Lawoko and Soares  who stated that advanced age was a determinant of distress and hopelessness levels among parents of children with chronic diseases. Once mothers understand their children’s condition, they can develop coping or adjustment skills to adjust their situation and have a new perspective in their lives . Adjustment strategies are the changes people make to their behavioral or psychological state in response to the stressors they encounter .
Finally, the current study has been able to shed some light on the various stressors that face mothers who have children with autism and the adjustment pattern that mothers can use to alleviate their stressors. In this respect, the pediatric doctors and nurses should be aware of the strategies that can manage stressors to help mothers to cope healthfully.
| Conclusion|| |
Mothers who have children with autism were confronted with multiple stressors. The most perceived stressors were physical, psychological, financial, community-related, and management-related stressors followed by social and marital stressors. Adjustment patterns were affected by various factors, such as mother’s age, social support, and family income related to employment of mothers.
- Regular periodic meetings should be conducted between mothers and hospital personnel to promote proper communication.
- Doctors and nurses should be aware of mothers’ stressors and adjustment patterns through an educational program, so that they can assist mothers to express feelings and to adjust effectively with their stressors.
- Ministry of Health should cooperate with social welfare and other relevant governmental and nongovernmental organizations to provide support for families of children with autism such as financial aids and provide awareness about available community services.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3], [Table 4], [Table 5], [Table 6], [Table 7], [Table 8]