Anxiety,depression,and quality of life in Iranian mothers of children with autism spectrum disorder

Abstract

Autism spectrum disorder (ASD) is being more recognized and diagnosed in developing as well as developed countries. We aimed to investigate the frequency of anxiety, depression, and quality of life in mothers of children with ASD in Iranian families. We conducted a descriptive cross-sectional study on demographic data and mental health characteristics of 127 mothers of children with ASD. Mothers of children with ASD had high levels of anxiety (72.4%), depression (49.6%), and low scores of health-related quality of life (HRQOL). There was strong association between the child’s age and the severity of mother’s depression and QOL. Duration since diagnosis of ASD positively correlated with maternal depression. Anxiety, depression, and low HRQOL are more common in Iranian mothers with autistic children in our study. Our findings have implications for further investigation in mental health status of mothers of children with ASD, and providing educational support and interventional strategies may improve the mental health status of the entire family.

Keywords

Anxiety autism spectrum disorder depression family functioning health-related quality of life

Introduction

Autism spectrum disorder (ASD) refers to a group of neurodevelopmental conditions characterized by delay and/or deviance in social, communicative, behavioral, and possible intellectual development which begin in the first years of life (Rezendes and Scarpa, 2011; Volkmar et al., 2002). Estimated prevalence of the disorder has escalated in recent years due to increased public awareness and broadened diagnostic criteria (Green et al., 2010; Johnson et al., 2011; Rezendes and Scarpa, 2011). Parents of children with ASD are at an increased risk for psychological problems since they may experience their children’s symptom profile, especially socially inappropriate behavior, aggression, stereotyped movements, communication, and language impairments on a regular basis (Green et al., 2010; Phetrasuwan and Shandor-Miles, 2009). Confrontation for their child’s behavior, stigma from society, excessive worry about the child’s future independent living, limited treatment options, and lack of understanding of the nature of ASD (Phetrasuwan and Shandor-Miles, 2009; Rezendes and Scarpa, 2011), in addition to the need for allocating more resources, energy, time, and money for the care of these children are some of the challenges that parents may encounter (Estes et al., 2009; Ghanizadeh et al., 2009; Hastings et al., 2005; Phetrasuwan and Shandor-Miles, 2009; Rezendes and Scarpa, 2011; Schultz et al., 2012). Senses of tiredness, devaluation, blame, anger, guilt, depression, and anxiety are the most reported feelings by parents (Allik et al., 2006; Ghanizadeh et al., 2009).

Several studies report significantly more stress, anxiety, and depression in parents of children with ASD in contrast with typically developing children or children with other types of developmental disabilities (Davis and Carter, 2008; Estes et al., 2009; Hastings et al., 2005; Olsson and Hwang, 2001; Phetrasuwan and Shandor-Miles, 2009; Schultz et al., 2012; Wang et al., 2012). Mothers who are often the primary caregivers, show more emotional reactions and are at an increased risk for higher level of stress, depression, and anxiety disorders (Estes et al., 2009; Ghanizadeh et al., 2009; Hastings et al., 2005; Olsson and Hwang, 2001; Phetrasuwan and Shandor-Miles, 2009; Rezendes and Scarpa, 2011). Some studies focused on lower quality of life (QOL) (Allik et al., 2006; Mugno et al., 2007), diminished psychological well-being, self-efficacy (Estes et al., 2009; Rezendes and Scarpa, 2011), and even low quality of marital satisfaction in these parents (Brobst et al., 2009; Hartley et al., 2011). Most of these studies are from Western countries, and evidence from low- and middle-income countries (LMICs) is lacking (Hastings et al., 2012).

The present study was conducted to investigate the relative frequency of anxiety, depression, and QOL of mothers of children with ASD in Iranian families. We hypothesized that our findings will demonstrate high anxiety and depression level and low QOL in participants similar to studies from other regions.

Methods

This was a descriptive cross-sectional study. The study was approved by the Ethical Committee at Research Center of Gilan University of Medical Sciences in accordance with declaration of Helsinki.

Participants

The study was conducted in two outpatient child/adolescent psychiatry clinics in Rasht, a city in northern Iran. These two clinics are the only psychiatry referral centers in the province of Gilan and accommodate over 1500 patients annually. All patients are referred by their primary physicians if there is a concern for the psychiatry/behavioral problems including ASD. We included both clinics (one private and one university-based community clinic) to assure that the result of the study reflects all socioeconomic status (SES) and cultural levels of the region. Study participants were mothers of 127 children with ASD between the ages of 2 and 16 years, living in urban and rural communities in Rasht and were recruited from two clinics during the period of May 2010 through June 2011. Participants were included in the study if they had a child with the diagnosis of ASD living at home and were able to read and write. We identified the qualified parents by reviewing the chart of the children with the diagnosis of ASD. These children have been already diagnosed by our child/adolescent psychiatrist, prior to study period, according to the standard diagnostic interview sessions and based on the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition–Text Revision (DSM-IV-TR) criteria. During the study period, 186 mothers of children with ASD were seen in two clinics. Among them, 26 mothers were either illiterate or did not have adequate knowledge to understand the questionnaire and 24 of them refused to participate in the study. In nine occasions, the questionnaires were incomplete and not included in data analysis. Data from 127 respondent mothers (68%) were analyzed.

We asked mothers about their history of medical and mental health problems and those who had medical, neurological, and mental disorders or known genetic syndromes were excluded from the study to avoid the overestimation of mental health pathology. Informed consents were obtained from all participants. All mothers completed the questionnaires in one session, and those who were indicated to suffer from severe pathology were referred for treatment.

Measures

Demographics questionnaire contained questions regarding mothers and children: gender of the child, ages of the child and mother, mother’s educational status, the date of diagnosis of ASD and administering the survey (to calculate the time interval between the diagnosis and completing the survey), and the subtype of ASD (autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), Asperger’s and Rett’s disorders) based on DSM-IV-TR.

Beck Depression Inventory (BDI), the Persian version, was used to measure depression in mothers. This self-report questionnaire consists of 21 symptoms and attitudes commonly seen in depressed patients (e.g. sadness, negative self-concept, sleep, and appetite disturbances). The symptoms are rated from 0 to 3 in severity as a Likert scale. Each question has the same set of four possible answer choices, which are arranged in columns and are answered by marking the appropriate one with a cross as following: 0 = Not at all; 1 = Mild-It did not bother me much; 2 = Moderate-It was very unpleasant, but I could stand it; and 3 = Severe-I could barely stand it. The range of scores is from 0 to 63. Rating is defined as follows: 0–15 = symptom-free; 16–30 = mild depression; 31–46 = moderate depression; and 47–63 = severe depression. We applied the Persian version of BDI, which has been previously validated (reliability: r = .77; validity: r = .70; internal consistency: α = .91) (Kaviani et al., 2000).

Beck Anxiety Inventory (BAI), the Persian version, was used to measure mothers’ anxiety. This 21-item self-report instrument measures the severity of anxiety in adolescents and adults. The BAI consists of 21 questions about how the subject has been feeling in the last week, expressed as common symptoms of anxiety (such as numbness and tingling, sweating not due to heat, and fear of the worst happening). The rating of symptoms is similar to BDI. The BAI has a maximum score of 63 which is rated as following: 0–7 = minimal level of anxiety; 8–15 = mild anxiety; 16–25 = moderate anxiety; and 26–63 = severe anxiety. The applicability of BAI in the Iranian population has been previously reported by Kaviani et al. (2008) (reliability: r = .72; validity: r = 0.83; internal consistency: α = .92).

World Health Organization Quality Of Life-BREF (WHO QOL-BREF) questionnaire: the WHO, with the aid of other collaborative centers around the world, has developed this instrument for measuring Health-Related QOL (HRQOL), which can be used in a variety of cultural settings while allowing the results from different populations and countries to be compared. WHO QOL-BREF produces a profile with four domain scores and two individually scored items about overall perception of QOL and general health. The four domains contain physical, psychological, social and environmental relationships. Scores are called in a positive direction ranging from 0 to 100, with higher scores indicating higher QOL. The two individual items assessing overall HRQOL are scaled in a positive direction, with a score range from 1 to 5 (converted in this study into a 0 to 100 score), with higher scores indicating higher HRQOL states.

Psychometric properties of the Iranian version of the WHOQOL-BREF have been previously tested by Nedjat et al. (2008), and they demonstrated reliability of more than .7 in all domains, except for social relationships (r = .55) in 1164 participants under study.

Statistical analysis

Descriptive data for assessing depression, anxiety, and HRQOL were analyzed using means ± standard deviations, frequencies, and percentages. One-way analysis of variance (ANOVA), χ ² test, t-test, and Pearson correlation were used to compare between the groups. We used the Statistical Package for Social Sciences (SPSS Inc., Released 2007.SPSS for Windows, Version 16.0. Chicago, Illinois, USA) to analyze the data. Statistical significance was inferred with a p value of less than .05.

Results

The study group consisted of 127 mothers of 96 boys and 31 girls affected by ASD. The youngest mother was 20 and the oldest was 57 years old. The youngest child was 2 and the oldest was 16 years old. The earliest age at first diagnosis of ASD was 18 months and the oldest age was 12 years old. Eighty-one percent of children had been diagnosed with ASD for less than 5 years duration, 18% for 5 to 10 years, and only 0.8% of children were diagnosed more than 10 years at the time of conducting the study.

Demographic and clinical characteristics of children with ASD and their mothers are shown in Table 1. The presence of anxiety, depression, and HRQOL in mothers of children with ASD is shown in Table 2. According to our results, 72.4% of mothers showed some levels of anxiety, while 49.6% reported some level of depression. In addition, as shown in Table 2, our mothers reported low mean levels in all four domains of HRQOL.

Table 1.

Demographic and clinical characteristics of children with ASD and their mothers.

	Number	Percentage
Mother	127
Age, mean ± SD (years)	33.23 ± 6.4
Mother’s education level
Less than college degree	32	25.2
College degree	67	52.8
Graduate degree	28	22
Place of residence
Rural	47	37
Urban	80	63
Children	127
Age, mean ± SD (years)	6.26 ± 2.82
Gender
Female	31	24.4
Male	96	75.6
Time interval since diagnosis
Under 5 years	103	81.1
Between 5 and 10 years	23	18.1
Above 10 years	1	0.8
Type of ASD
Autistic disorder	80	63
Asperger’s disorder	27	21.2
PDD-NOS	18	14.2
Rett’s disorder	2	1.6

ASD: autistic spectrum disorder; PDD-NOS: pervasive developmental disorder not otherwise specified.

Table 2.

Anxiety, depression, and HRQOL in mothers of children with ASD.

	Number	Percentage
Anxiety
Symptom free	35	27.6
Mild	37	29.1
Moderate	30	23.6
Severe	25	19.7
Depression
Symptom free	64	50.4
Mild	44	34.6
Moderate	16	12.6
Severe	3	2.4
HRQOL	Mean ± SD
Physical health	22.68 ± 5.59
Psychological health	18.6 ± 4.76
Social relationships	9.43 ± 2.53
Environment	24.92 ± 5.87

ASD: autistic spectrum disorder; HRQOL: health-related quality of life.

Examining the relationships between measured scales and characteristics of children and mothers by children’s age-group using one-way ANOVA showed a significant difference in severity of mothers’ depression (p = .002) and the worsening of psychological functioning of HRQOL scales (p = .011), when children were older than 10 years (Table 3, see supplementary material). Also the time frame from the diagnosis of ASD correlated with the severity of depression in mothers (p = .006, Table 4, see supplementary material). We did not observe any differences between depression and anxiety levels by different subtypes of ASD, children’s gender, mothers’ age, and educational level (data not shown).

There were significant relationships between higher educational level of mothers and better physical and psychological domains of HRQOL (p = .022 and p = .043, respectively, Table 5, see supplementary material). Additionally, one-way ANOVA showed that younger mothers had better psychological HRQOL (20.08 ± 3.41 in mothers younger than 30 years vs. 17.68 ± 5.37 and 19.5 ± 2.39 in mothers between 30 and 40 years and older than 40 years, respectively, p = 0.032). Pearson correlation showed positive relationship between anxiety and depression of mothers (r = .454, p < .0001). We also observed a relationship between severity of anxiety and depression with lower scores in all domains of HRQO (p < .05).

Discussion

This study was the first to report anxiety, depression, and HRQOL in mothers of children with ASD in Iran. Based on this study, we observed high scores of anxiety and depression among these mothers, as we found some degree of anxiety in two-thirds of our mothers and depression in half of them. These results are significantly higher than prevalence of anxiety (12.48%) and depression (4.91%) in the general female population in our country (Mohammadi et al., 2005). In addition, 49.6% observed depression in this study group is more than twice higher than 18% reported depression in the general population by Modabernia et al. (2008), using the same study instrument in the same city population. Also the HRQOL scales of these mothers were lower than the general female population in Iran (Nedjat et al., 2008).

Our finding is similar to previous findings on caregivers of children with ASD in the other parts of the world (Davis and Carter, 2008; Hastings et al., 2005; Olsson and Hwang, 2001; Phetrasuwan and Shandor-Miles, 2009). Olsson and Hwang (2001) found increased depression scores in 50% of Swedish mothers, using BDI scores, while 16% of them had severe depression. The fact that only 2.4% of our mothers had severe depression may reflect that the effect of children’s ASD on the mood of Iranian mothers is not grave. However, 81% of children with ASD had been diagnosed less than five years duration, and it is plausible that as time passes and the course of the disorder progresses, the effect of children’s illness on maternal mental health will become more prominent. Conversely, Davis and Carter (2008) reported 33% depressive symptoms and 6% clinical anxiety symptoms in mothers of 54 toddlers with newly diagnosed ASD in the United States and concluded that primary phase of diagnosis and beginning of adjustment in caregivers of children with ASD is more associated with stress and depression. Since access to supportive, social, and mental health services in LMICs is different than from the United States, the level of difficulty to reach these services in Iran may be a contributing factor, as it takes longer for Iranian mothers to receive the diagnosis of ASD for their children and that may explain their quicker initial adjusting to the diagnosis of ASD, but as the course of the disorder progresses, it will become more difficult and frustrating for parents to deal with their child’s mental illness. As our study results reflect, mothers of older children with ASD and those who were diagnosed at an earlier age and for a longer period of time had more severe depression and lower HRQOL scores. Further research with longitudinal methodology is required to assess mothers’ psychological status in different time frames from diagnosis of ASD in their children.

In addition, the observed negative association between higher depression, anxiety, and lower HRQOL is consistent with prior studies (Allik et al., 2006; Hastings et al., 2005; Phetrasuwan and Shandor-Miles, 2009). Many studies assessed the level of stress in parents, but we used HRQOL scales as a general mental health indicator. Recently, Khayatzadeh-Mahani et al. (2013) reported the association between maternal QOL in mothers with pervasive developmental disorder (PDD) children and their SES, marital status, and subtype of PDD. While based on our findings, all aspects of the quality of life were affected, Phetrasuwan and Shandor-Miles (2009) showed association between depressive symptoms and lower levels of physical functioning of mothers of children with ASD.

The high levels of anxiety, depression, and low HRQOL may be explained by common genetic predisposition in these families (Mugno et al., 2007). Several studies reported strong genetic influences for broad autistic phenotype in the family of children with ASD, including a range of personality traits, vocational interests, social, communicative, language, and cognitive deficits (Bolton et al, 1998; Folstein and Piven, 1991; Mugno et al., 2007). Other studies highlighted the familial aggregation of psychiatric disorders such as tic disorders, obsessive–compulsive disorder, affective disorders, especially depressive, anxiety, and personality disorders (Yirmiya and Shaked, 2005).

On the other hand, the effect of pediatric chronic illness, as an environmental factor, on the mental health and well-being of the entire family cannot be ignored. Children with severe chronic illness are the most important sources of stress for their parents as they are constantly worried about their children’s behavior, learning problems, and being bullied by others. Children’s sleep pattern, feeding problems, and sensory impairments can contribute to the level of distress in parents. In addition, the majority of these families have a lower income as a result of being out of job or missing work hours to take care of their children as well as the cost of medical care. Hence, behavioral problems in children and its effect on parental stress can interfere with feelings of self-efficacy and consequently increase anxiety and depression in parents, particularly mothers of children with ASD (Davis and Carter, 2008; Estes et al., 2009; Hastings et al., 2005; Mugno et al., 2007; Rezendes and Scarpa, 2011; Schultz et al., 2012). As general understanding of behavioral characteristics in these children is limited, parents of children with ASD have difficulties with their own social lives, relationships with other family members, relatives, and the community as a whole. Some families try to avoid everyday life routines and prefer to withdraw and isolate themselves (Ghanizadeh et al., 2009). This lower level of coping mechanism increases stress and tension and contributes to higher levels of depressive and anxiety-related symptoms. The impact of tiredness, exhaustion, and pressure to take care of their children is not just limited to the psychological aspects but to the QOL, economic status, and family relationship. Some parents may even feel that they are encumbered by their children and they are the victims of their children’s illness.

Lower public understanding about ASD, higher emotion-related coping reactions in parents, and decreased access to therapeutic and supportive system in LMICs may play a role in higher burden and even poorer mental health of Iranian mothers. However, strong religious beliefs in these populations may help with their coping strategies (Ghanizadeh et al., 2009; Gray, 2006). As both religious and cultural practices have great emphasis on gaining endurance. This can further enhance the resilience among parents in caring for their children. Recent studies have indicated that parents with highest resilience better coped with their children’s condition and provided better care for them (Bekhet et al., 2012; Ruiz-Robledillo et al., 2014). In addition, raising children with ASD can result in positive outcomes like family adaptation, a process of restructuring the family based on the stressors (Patterson, 1988). Hence, level of stressors, children’s behavior and adaptive function, family coping strategies, resources, sense of coherence, environmental factors, and social support system can influence both negative and positive outcomes in parents. McStay et al. (2014) reported the association of these family-related variables with parental outcome. As they observed that negative outcomes resulted from the children’s externalizing behaviors, while family sense of coherence related to more positive parental outcomes.

Limitations

One of the limitations of our study was that we did not evaluate children’s behavioral problems. We also did not assess the SES of these families. Both of these factors are shown to have a great impact on the QOL and overall well-being in general population. Additionally, our questionnaires were self-reported, and we could not include illiterate and uneducated mothers in our study. In addition, we cannot underestimate the effect of different types of biases in self-administered questionnaires.

Conclusion

This study was the first to investigate anxiety, depression, and HRQOL in Iranian mothers with children with ASD. Similar to studies from other regions, we observed high scores of anxiety and depression among mothers, as we found some degree of anxiety in two-thirds of our mothers and depression in half of them.

Children with ASD have a variety of complex problems that impact parental mental health. Mothers are at higher risk for experiencing greater distress, lower psychological well-being, anxiety, and depressive symptoms. In our study, mothers with older children and those who were diagnosed for a longer period were more depressed and reported worse QOL. Caregiver’s mental health status may influence their affection and response to their children, compliance with the children’s treatment plan, and, last but not least, their own QOL. As parents of children with ASD report difficulty in accessing resources and information about their child’s condition, providing educational programs is an effective tool, not only to provide resources but also to reduce family stress and increase sense of competence, self-efficacy, and consequently better outcomes for both parents and children. While our study emphasizes the importance of recognizing and addressing caregivers’ mental health status and QOL, further longitudinal research in a larger population is needed to investigate efficacy of educational programs in order to reduce parental stress, depression, and anxiety to improve the quality of life.

Footnotes

Conflict of interest

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The study was approved by the Ethical Committee at Research Center of Gilan University of Medical Sciences, Rasht, Iran (Protocol # 567-2009/08/09). There was no external financial support/grant for this study. The results of this study have not been previously published or presented elsewhere.

Supplemental material

The online appendices are available at .

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