Saudi mothers' perception of their children with attention-deficit hyperactivity disorder in Dammam, Al-Qatif, and Al-Khobar cities, Saudi Arabia

Abstract

BACKGROUND:

Mothers' perceptions about attention-deficit hyperactivity disorder (ADHD) are central to the management of the disorder. The aim of the study was to assess the knowledge, experiences, and attitudes of mothers with ADHD children toward ADHD and identify their common sources of information and service barriers from the perspectives of these mothers in the Dammam, AI-Khobar, and Al-Qatif areas.

MATERIALS AND METHODS:

This cross-sectional study comprised mothers of 132 children with ADHD who attended private and government sector special education schools and day-care centers in the Al-Khobar, Dammam, and Al-Qatif cities of Saudi Arabia. All the mothers completed self-administered structured questionnaires.

RESULTS:

About 47% mothers of children with ADHD had poor knowledge of ADHD, 74.2% had a positive attitude toward the condition, and 51.5% had a neutral perception of their children. Most of the children received combined therapy, with 69.5% exhibiting improved behavior. The most common concern of mothers was fear of the side effects of medication (39.4%). The mothers were the first family members to seek advice; the most common reason for first visit to clinic were poor social skills (45.5%), and attention hyperactive aggressive behavior (45.5%). The most common reason for the delay in diagnosis was failure to recognize the child's aberrant behavior (67.4%), whereas the most common source of information was internet (63.6%).

CONCLUSION:

It is important for clinicians to address the mothers' perceptions of ADHD as part of the treatment for ADHD to improve the children's quality of life. It is also important to develop educational materials and awareness campaigns that target mothers and facilitate good communication between the services through the social media.

Introduction

Attention-deficit hyperactivity disorder (ADHD) is one of the most common childhood neurodevelopmental conditions, characterized by a persistent pattern of inattention and/or hyperactivity-impulsivity that interferes with functioning or development.[1] The ADHD worldwide-pooled prevalence in 2007 was 5.3% in the population below the age of 18 years. In the eastern region of Saudi Arabia, the prevalence was 3.5% in girls aged 6–15 years in 2012[2] and 16.4% in boys aged 6–13 years in 2008.[3] ADHD is often comorbid with other psychiatric disorders[4] and can persist into adulthood.[5] Untreated ADHD can cause an emotional, social, academic, and economic burden on children, families, and the community.[6,7]

A literature review of ADHD in Saudi Arabia on the prevalence and the awareness of teachers and the general population suggested that no study in Saudi Arabia had evaluated the perceptions of mothers of children with ADHD. This lack of data spurred our decision to conduct this study.

Materials and Methods

This cross-sectional study was conducted from November 2018 to January 2019 in private and government sector special education schools and day-care centers in Al-Khobar, Dammam, and Qatif cities of Saudi Arabia. All Saudi mothers with children aged <9 years with confirmed diagnosis of ADHD, who agreed to participate in the study, were included. The entire population was recruited from Saudi mothers of children attending special education schools and day-care centers in the private and government sectors in Al-Khobar, Dammam, and Al-Qatif. The study population comprised a total of 132 eligible mothers, with a response rate of 73%. Ethical approval was obtained from the Ethical Committee of the Ministry of Education, and informed written consent was obtained from all participants.

The questionnaire included an introduction on the purpose of the study, a statement of appreciation to the mothers for their participation, and the name of the investigator. It elicited data on:

1. Sociodemographic characteristics: mothers (age and level of education), children (current age, age at diagnosis, gender, birth order, type of ADHD, and comorbid disease), and family income

2. The type of therapy, the impact of the therapy on the child, and the concerns of the mother regarding treatment through questions with yes/no answers

3. Source of the mother's information: How and where they sought advice on treatment, the reason for the first visit to the clinic, the reason for the delay in seeking medical help, and their family history of ADHD

4. Knowledge regarding ADHD (seven questions with yes/no answers and “I don't know”). The knowledge score was calculated as percentages of correct answers. Knowledge was categorized as poor = <50% correct answers, fair = 50%–75%, and good = a score of 75% and above

5. The attitude of mothers toward ADHD, consisting of 12 statements, each scored on a 3-point Likert scale ranging from 1 to 3. Individual scores ranged from 5 to 15 (attitude toward the child) and from 7 to 21 (attitude of mothers toward the ADHD condition). Attitude raw scores, percent scores, and mean percent scores for each area and overall attitude were calculated. Attitude was categorized as follows: mothers scoring less 50% had a negative attitude, from 50% to 80% were neutral, and >80% were positive

6. Services available in Saudi Arabia were evaluated by 14 statements with yes/no answers.

After data collection, the raw data were coded and scored using the Statistical Package for the Social Sciences (SPSS), version. 21 Released 2012 (Armonk, New York). Descriptive statistics such as frequency, distribution, mean, and standard deviation were computed to describe different characteristics.

Results

Table 1 shows the sociodemographic characteristics of the sample comprising 132 mothers of ADHD children. The mean age at diagnosis of the ADHD children was 4 ± 1.65 years, ranging from 1 to 9 years. Child order was firstborn, 47 (35.6%), followed by fourth or later, 44 (33.3%); second, 24 (18.2%); and third, 17 (12.9%).

Table 1.

Sociodemographic characteristics of mothers having child with ADHD (n=132)

Characteristics	N (%)
Child’s age (years)
<5	16 (12.1)
5-9	87 (65.9)
≥9	29 (22.0)
Mother’s age (years)
<30	20 (15.2)
30-40	87 (65.9)
≥40	25 (18.9)
Child’s gender
Boy	93 (70.5)
Girl	39 (29.5)
Mother’s education
Illiterate/primary	8 (6.0)
Intermediate/secondary	62 (47.0)
University/	62 (47.0)
Comorbid disease (n=87)
Autism	40 (30.3)
Anxiety	2 (1.5)
Learning disability	19 (14.4)
Speech disorder	14 (10.2)
Other	12 (9.5)
Family income (Saudi Riyals)
<5000	29 (22.0)
5000-10,000	61 (46.2)
>10,000	42 (31.8)
ADHD type
Hyperactive	28 (21.2)
Inattentive	25 (18.9)
Combined	61 (46.2)
Unknown to mothers	18 (13.6)
Family history
Yes	23 (17.4)
No	109 (82.6)

ADHD=Attention-deficit hyperactivity disorder

Regarding the mother's knowledge of ADHD, the mean percent knowledge score was 9.82 ± 4.41, ranging from 0 to 18. Mothers with excellent knowledge made up 21.2%, those with fair knowledge 31.8%, and those with poor knowledge 47.0%. The distribution of the population by responses to knowledge statements is shown in Table 2.

Table 2.

Mothers’ responses to various statements regarding knowledge about ADHD (n=132)

Knowledge statements	N (%)
ADHD is a neurodevelopmental disease characterized by a persistent pattern of inattention and/or hyperactivity-impulsivity	94 (71.2)
ADHD continues till adolescence	64 (48.5)
ADHD affects boys more than girls	71 (53.8)
ADHD can be caused by genetics, injury during pregnancy, premature birth, or brain injury	66 (50.0)
ADHD is diagnosed by a specialist based on history, examination, and specific criteria	111 (84.1)
Treatment of ADHD depends on child age and severity and it could be both behavioral or pharmacological	113 (85.6)
Methylphenidate (Ritalin) is a medication used in ADHD	34 (25.8)
Methylphenidate (Concerta) is a medication used in ADHD	29 (22.0)
Atomoxetine (Strattera) is a medication used in ADHD	19 (14.4)

ADHD=Attention-deficit hyperactivity disorder

Table 3 depicts the type of treatment used, effects of therapy, and concerns about therapy in ADHD children according to mothers.

Table 3.

Mothers’ responses to type of treatment, for children with effects of therapy, and concern about therapy on attention-deficit hyperactivity disorder

Therapy	N (%)
Children on treatment (n=132)
Yes	82 (62.1)
No	50 (37.9)
Children on ADHD therapy (n=82) (yes answer)
Behavioral	39 (47.6)
Pharmacological	15 (18.3)
Combined	28 (34.1)
Effect of treatment (n=82) (yes answer)
Positive performance in school	39 (47.6)
Increase self-steam	12 (14.6)
Better behavior	57 (69.5)
The negative effect of the child	4 (4.9)
Better social relationship	22 (26.8)
No change	12 (15.9)
Concern about therapy (n=132) (yes answer)
Not convince	14 (10.6)
Quick treatment	12 (9.1)
A side effect of medication	52 (39.4)
Long treatment time	41 (31.1)
High cost	18 (13.6)
No need to treatment	27 (20.5)

ADHD=Attention-deficit hyperactivity disorder

The source of mother's information, first advice to seek help, the reason for the visit to the clinic, and reason for delay in treatment are shown in Table 4.

Table 4.

The source of information, first advice to seek help, the reason for the visit to the clinic, and reason for delaying treatment (n=132)

Statements (yes answer)	N (%)
Source of information
Internet	84 (63.6)
Physician	71 (53.8)
Family	20 (15.2)
Book	19 (14.4)
TV	13 (9.8)
Social seminar	12 (9.1)
First advice to seek medical help
Mothers	48 (36.4)
Family members	33 (25.0)
Psychology	30 (22.7)
School	25 (18.9)
Pediatric	25 (18.9)
Psychiatric	16 (12.1)
Friends	11 (8.3)
Family doctor	6 (4.5)
Reasons for the first visit to the clinic
Poor social skills	60 (45.5)
Attention hyperactive aggressive behavior	60 (45.5)
Advice from school, friends, or family	44 (33.3)
Poor scholastic achievement	20 (15.2)
Reasons for the delay in seeking medical advice
Unrecognized the behavior of the child	89 (67.4)
Didn’t know where to go	45 (34.1)
Child neglect due to family disintegration	10 (7.6)
Think about mental disorder	7 (5.3)

Regarding the attitude of the mothers toward ADHD, 74.2% had a positive attitude, 24.2% were neutral, and 1.5% were negative. Mothers with a positive attitude toward their ADHD children made up 14.4% of the respondents, those who were neutral made up 51.5%, and those with negative attitudes made up 34.1%.

Table 5 presents the statements used in the study to elicit the opinion of mothers toward ADHD and their feelings toward their children together with their responses.

Table 5.

Opinion of mothers of children with ADHD about ADHD and feeling of mothers toward their children (n=132)

Opinion	Answer	N (%)
I think the disease results from envy	Agree	18 (13.6)
I think the disease caused by a type of diet of high sugar and artificial food	Agree	51 (38.6)
I think the disease is due to the spoiling of the parent	Agree	13 (9.8)
I think treatment can be by herbal medication only	Agree	7 (5.3)
I think there is no treatment for the disease at all	Agree	21 (15.9)
Mean score		12.37±1.85
Mean percentage of score		82.47±12.33
Median		86.7
I feel embarrassed and disappointed with my ADHD child	Agree	50 (37.9)
I feel too overprotective on my child	Agree	62 (47.0)
I feel discrimination from the community	Agree	84 (63.6)
I feel constantly worried about my child’s future	Agree	103 (78.0)
I feel the disease can cause psychological stress	Agree	105 (79.5)
I feel the disease is a financial burden on family (as the cost of private service and medication)	Agree	61 (46.2)
I feel my child has a difficult relationship with his siblings	Agree	54 (40.9)
Mean score		12.19±3.57
Mean percentage of score		58.08±17.01
Median		57.1

ADHD=Attention-deficit hyperactivity disorder

Table 6 presents the various reasons the mothers gave as being barriers to taking advantage of the services.

Table 6.

Barriers to using the health-care service (n=132)

	N (%)
Barriers related to health-care service
I think there is a long waiting time to get service	86 (65.2)
I think communication with service providers was poor	81 (61.4)
I face refusal to get service from service providers	20 (15.2)
I think service providers are too far	57 (43.2)
I think the service delivery system is weak	67 (50.8)
I think the service delivery system is deficient	72 (54.5)
Barriers related to mother (caregiver)
I think the lack of knowledge about ADHD and the service delivery system	85 (64.4)
I feel no one can help me	56 (42.4)
I don’t think I have enough time	40 (30.3)
I don’t think I have enough money	57 (43.2)
Barriers related to nonhuman resources and finance
I think services are dispersed	71 (53.8)
I am afraid of the negative impact on my child	76 (57.6)
I feared for the privacy of my child	46 (34.8)
I had a bad experience with service	33 (25.0)

ADHD=Attention-deficit hyperactivity disorder

Discussion

ADHD is a common childhood neurodevelopmental disorder that affects the quality of life of many children. It is, however, a treatable condition with a very good response, especially with the use of the appropriate medications. However, parents' insights into the illness and the acceptance of treatment are crucial to achieving good results. Studying mothers' perceptions is, therefore, of paramount importance.[1,8]

It is essential to understand the social context of the disorder. Two-thirds of the children in our study were aged 5–9 years, with a mean age at diagnosis of ADHD of 4 ± 1.65 years, which is similar to the findings of previous Saudi studies,[9,10] indicating that ADHD occurs mostly earlier, at the ages of 7–9 years.[11] Males are at a greater risk of ADHD, as explained in literature, due to greater genetic susceptibility in males and the underdiagnosis of ADHD in females.[12] This is in agreement with our study in which there was a predominance of male children. The greatest number were firstborn children, followed by fourth or later, similar to the results of another Saudi study that observed that the highest percentage of children with ADHD risk were firstborns, followed by last-borns[13] in the course of determining that the likelihood of ADHD in first, middle, or later-born children, as well as single children, are nearly equal.[14] Genetic transmission plays a major role in the development of ADHD, as suggested by a positive family history of ADHD. However, the study did not discuss the causes of ADHD.[15] In our study, the combined type of ADHD was the highest, with two-thirds showing comorbidities. This is similar to the assertions in the literature that the combined type was the most common with greater comorbidity[16] [Table 1].

The highest percentage of mothers were aged between 30 and 40 years, whereas a previous study found that ADHD was associated with young mothers aged 20 years or younger at the time of the child's birth.[17,18] The difference in mothers' ages in our study may be related to the question in the survey that asked for their current age, not their age at the birth of their children. The high education level of mothers in this study may reflect the fact that the net enrollment rate of the Saudi female population is higher at the university stage than the male population.[19] One Saudi study showed that ADHD was not limited by the education level of parents,[20] just as a UAE study showed no relation between the mother's level of education and ADHD.[21] In contrast, some studies have revealed that ADHD was more common in children with less-educated mothers.[9,22] These differences in study results indicate that further research is needed [Table 1].

Parents' perception referred to their knowledge and beliefs about the disease and how the disorder affected their lives since their decision to seek help and select treatment interventions can be affected by their knowledge and beliefs.[23] The knowledge of the mothers in our study was high with regard to the definition, method of diagnosis, and type of treatment, although this depended on severity and age; it was neutral regarding the etiology and the fact that ADHD affected boys more than girls and low as regards the names of specific medications. Only one previous study has been conducted in SA to evaluate parental knowledge pre- and posteducational program. This showed improvements in parental knowledge exemplified in the rise of the proportion of respondents with good knowledge from 16.7% to 46.7%.[10] Other studies have shown that parents had relatively good knowledge of the symptoms of the disorder. However, they lacked knowledge of the diagnosis, treatment, and prognosis.[24] This difference in results may have been affected by race, social, and cultural issues, the characteristics of participants, and the scoring system used in a given study.

Positive attitude score of mothers toward ADHD [Table 5] may reflect the high level of the mothers' education, though we note that the mothers expressed the belief that ADHD could be caused by a high-sugar diet, a common misconception not supported by scientific evidence on the relationship between sugar and increased hyperactivity.[25] This finding is similar to that of Bussing et al. in which most of the African-American parents believed that the cause of ADHD was high sugar consumption, which meant that not much benefit would be expected from treatment.[26] Mothers disagreed that the disease was the result of envy, which may be a positive reflection of Islamic religion on our culture. Furthermore, in our study, 70.5% did not agree that it was due to bad parenting, unlike the finding by Davis et al. in which parents believed that the disorder was caused by poor parenting or lack of discipline, a position that can delay treatment.[27]

The attitudes of the mothers toward their children were neutral [Table 5]. As a previous qualitative study showed the mothers have child with ADHD disease experience varies feelings such as (frustration, exhaustion, depression, guilt, hope, and anger), and worry about child performance in school, ability to succeed in school or work in the future and acceptance in society. We found that families felt socially isolated, had lost internal and external family relationships, and carried a heavier emotional burden, as they felt rejected by a society which was usually judgmental about parents of a child with ADHD. Parents' work or jobs also suffered because of having to spend more time and energy with the child. Moreover, parents felt that they did not spend enough time with the affected child and his/her siblings. They were aware of the problematic relationship between the child and his or her siblings. All of these increased the feelings of guilt and impacted the well-being of the whole family. Mothers try to cope with this stress in different ways, including trying to redirect the excessive energy of the child, punishment (which could reach child abuse if severe), social help, and accepting and loving their children regardless of such difficulties, sustained by their spiritual strength. Further quantitative studies in the future are needed to clarify mothers' challenges.[28,29] One qualitative study conducted in the USA found that 77% of mothers felt stigmatized and 40% felt social rejection because of their children's condition,[30] and in another USA study, 26% of the families reported financial problems because of their children's ADHD.[31] Ultimately, the disease affects the child, family, and community differently, so there is a need to develop a strategy to address the family's needs and reduce their stress.

The high percentage of children on medication goes with the guideline that recommends starting medication at an early age along with behavioral therapy,[19] and the finding that mothers discerned a positive effect in their children after receiving treatment agrees with previous studies[32,33] [Table 3]. However, the present study did not discuss the factor of satisfaction with medication or its extent. These remain issues for further research. The mothers in our study were concerned about the side effects of the medications for the treatment of ADHD. This was similar to a Saudi study which showed a high level of concern over such issues as side effects of medications and starting them at an early age.[32] Another Saudi study reported that most of the parents believed that all psychotropic medications were addictive.[34] A low percentage of mothers reported the high cost of medication as an issue. This may be because medication is free in Saudi governmental hospitals. The issue they had was with the limit to the prescriptions given in psychiatric clinics and the unavailability of some medicines on occasion. In contrast, a study in the USA found that 36% of parents expressed the belief that the child would recover on their own without any treatment. The low percentage of parents with such beliefs in our study may be related to the large proportion of children with comorbidities, for which the majority were on medication.

The source of mothers' information was largely the Internet [Table 4], similar to the finding of Bussing et al. in which parents indicated a preference for information from the Internet,[35] and of another study in which parents turned to social media to try several scientifically unproven interventions.[36] As the Internet is a preferred source of knowledge of mothers, there is a need to develop a scientific website and in the social media that target mothers and the community on how to select information.

Parents play a major role by recognizing behavioral problems in their children early prompting them to seek medical help Mourad in his study (2004) which found that mothers made up the highest percentage of parents accompanying their children with ADHD to hospitals and traditionally mothers spent more time and took greater responsibility in caring for their children with ADHD.[10] These results are similar to ours, in that the mothers in our study were the first to seek clinical help [Table 4]. This study found different reasons for the delay in seeking medical advice: the majority failed to recognize the unusual behavior of the child and considered it natural. In a study of Florida elementary school students, about 88% of the children were recognized as showing signs of ADHD, but only 23% received treatment. Other study showed the most common reasons were a lack of knowledge of where to go for help, and that parents did not see a need for professional treatment, as abnormal child behavior may seem “normal” or may represent an absence of understanding of the course and nature of ADHD.[37]

Saudi Arabia provides a variety of comprehensive specialized services as support for patients with ADHD and their families. This includes the raising of awareness and dissemination of information about ADHD. The government through such organizations as the Ishraq Association (the Saudi ADHD Society) also provides education and training programs related to ADHD for families, educators, and health-care practitioners. In our study, as regards barriers to service [Table 6] as was found in the CAPPA survey, the time between the detection of symptoms and the first visit to the doctor ranged from 7 to 42 months, which may indicate that the time needed for parents to adjust to the idea of seeing a physician to obtain an official diagnosis for their children was difficult. This time ranged from 3 to 18.3 months with multiple doctor visits in the course of the diagnosis, with a mean of 2.5.[38] In a Japanese study, however, the time lapse between the first raising of parental concern and the first visit to the doctors was about 2.6 years. A major reason for this was difficulty in deciding what services were most suitable and the long distances from home to the service, with a mean transit time of around 1 hour.[39] Furthermore, similar to a longitudinal study in the UK, it was found that 54% of parents reported poor communication with professionals. Ten percent of the parents also expressed worries about the cost of travel or time off work, and 20% worried about privacy, as their children might be left with a record that might adversely affect their future prospects.[40] The mothers in our study reported that they felt that no one could help them. This was also found in a qualitative study that indicated that mothers felt a lack of family and community support, with no specialized centers for ADHD, and a lack of experts in the field.[41]

Limitations

As the sample size of the study was small, we expect that a larger sample size would yield more precise results. The service barrier in our study self-reported by mothers was not confirmed by medical records.

Conclusion

In general, the results of this study highlight the importance of mothers' perceptions about ADHD and the fact that clinicians should be aware of and assess the knowledge, beliefs, and concerns of mothers and correct any misconceptions as part of the treatment of ADHD in order to improve treatment, compliance, and satisfaction.

There is a need to develop scientific social networks to provide scientific information to parents to enable them to make the best decisions for their children and establish a family-centered approach by improving communication between health centers, family physicians, pediatric practitioners, and school services with child psychiatric services. This would facilitate earlier referral and treatment and involve the community in developing educational programs directed by scientific specialists, as well as group therapy, to educate parents about medication, help decrease the stress on mothers, and improve their quality of life.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.