|Year : 2018 | Volume
| Issue : 2 | Page : 108-114
Comorbidities among children with intellectual disability presenting for disability certification at a tertiary care center and assessment of burden in mothers of these children
Pikakshi, Kamal Kumar Verma, Shri Gopal Goyal, Anju Thakral, Girish Chandra Baniya
Department of Psychiatry, DIMHANS, Sardar Patel Medical College, Bikaner, Rajasthan, India
|Date of Web Publication||14-Nov-2019|
Shri Gopal Goyal
Department of Psychiatry, DIMHANS, Sardar Patel Medical College, Bikaner, Rajasthan
Source of Support: None, Conflict of Interest: None
Background: Intellectual disability (ID) (ICD-11) is defined as impairment in general mental abilities as well as social adaptability of the individual. It is associated with many physical and behavioral comorbidities as well as sleep problems which contribute to the disability. Living and caring for the person with ID is burdensome. Aims and Objectives: To assess physical, behavioral and sleep problems among children with ID and also assess burden in mothers of these children. Materials and Methods: This was a cross-sectional observational study carried out in tertiary care teaching hospital. Children approaching for disability certification were assessed clinically. Assessment of IQ (Intelligence quotient) and SQ (Social quotient) was done using Seguin form board and Vineland social maturity scale (VSMS) respectively and Diagnosis was made on the basis of ICD-11. Those fitting into the diagnosis of ID and fulfilling the screening criteria were taken into the study along with their mothers. Comorbidities were assessed and burden in the mothers who are the main caregivers was assessed on Zarit burden scale. Results: 72% of the children were males. The mean age of the children was 11.15 yrs. The mean IQ and SQ of children in our study were 43.88 and 45.28 respectively. IQ and SQ were found to be positively correlated. 44% of children were having mild, 36% were moderate, 6% were severe while 14% belonged to the category of profound intellectual disability. Among behavioural problems hyperactivity was the most common problem present in 48% of the children. Sleep problems were also prevalent among these children, bedtime problems being the most common (22%). Majority of mothers of these children reported burden (90%). Conclusion: Children with ID had significant co-morbidities and sleep problems which need to be addressed separately. Higher level of ID is associated with increased severity of burden; it being the maximum in the caregivers of childs with severe to profound ID. Adequate measures to address issues related to caregiver will be very helpful to relieve stress and finally improve care of intellectually disabled children.
Keywords: Behavioral problems, burden, caregivers, intellectual disability
|How to cite this article:|
Pikakshi, Verma KK, Goyal SG, Thakral A, Baniya GC. Comorbidities among children with intellectual disability presenting for disability certification at a tertiary care center and assessment of burden in mothers of these children. J Mental Health Hum Behav 2018;23:108-14
|How to cite this URL:|
Pikakshi, Verma KK, Goyal SG, Thakral A, Baniya GC. Comorbidities among children with intellectual disability presenting for disability certification at a tertiary care center and assessment of burden in mothers of these children. J Mental Health Hum Behav [serial online] 2018 [cited 2023 Jan 27];23:108-14. Available from: https://www.jmhhb.org/text.asp?2018/23/2/108/270992
| Introduction|| |
Intellectual disability (ID) and disorders of intellectual development are revised diagnosis of mental retardation (MR) in recent classification systems. ID involves impairment in general mental abilities as well as social adaptability of an individual. According to the American Psychiatric Association, the worldwide prevalence of ID has been estimated to be 1%. As per the census 2011, the prevalence of ID in India has been estimated to be 2.60%, while as per the National Mental Health Survey 2016, the pooled prevalence (screener positivity) between age 18 and above 60 years was 0.6% and in adolescents (13–17 years), the pooled prevalence was 1.7%.
Behavioral problems are frequent in children with an ID, regardless of the underlying etiology. These can be due to lack of communication skills, cognitive skills, or problem-solving skills.
Studies from Western countries reported two- to fivefold higher rate of psychiatric disorders in children with ID compared to typically developing children. According to a Western study, the four most common problems are sleep disturbances, agitation (as it relates to attention deficit hyperactivity disorder [ADHD]), aggression, and self-injury.
A study of psychiatric and behavioral problems among ID children (n = 574) from India revealed that nearly half of them had associated psychiatric or behavioral disorder. ADHD was the most common psychiatric comorbidity found in 11.1%, followed by conduct disorder in 1.1%, temper tantrums in 3%, aggression in 0.6%, autism in 4.7%, and other nonspecific behaviors in 10.8%.
The prevalence of sleep disorders in children with ID is high as compared to that of the general population regardless of their age. The most common type of sleep disorders in this population is of behavioral, for example, night waking, night settling, and early waking. Causal factors include a potentially different sleep physiology as a result of perturbation of the neural structures that regulate sleep.
Family is the main source of support for children with disabilities in any society. Those who are closest to children with ID and care for them bear the brunt of their disability. Families experience enormous physical and emotional burden while caring for such relatives. Poor performance by the children with disability, be it physical, psychological, or social, needs to be compensated by the caregivers. This leads to unavoidable stress and psychological trauma among the families. In a study conducted in Turkey, high burden among mothers was seen with highest score in sub-factors such as perceived inadequacy, time requirement, emotional burden, physical burden, economic burden and social burden and the burden increased with the increasing level of ID in children.
There are very few studies related to the physical, behavioral, and sleep problems in children with ID, especially in the western region of India, where care provided for ID is mainly home based mostly by the mothers, and alternate support systems are meager and unaffordable by many people. Not much work has been done to gauge the impact of severity of ID on the level of burden perceived by the mothers. Hence, this study was planned to look into these issues.
| Materials and Methods|| |
After getting approval from the ethical committee of the institution, a cross-sectional, observational study was conducted among children in the age group of 5–15 years presenting for disability certification in the period of July 1 to July 31, 2018. Assessment for ID was done using the Vineland Social Maturity Scale (VSMS) and Seguin Form Board. The final diagnosis was made using the International Classification of Diseases-11 criteria. Those who were fulfilling the criteria for benchmark disability (40%) were provided with disability certificate by the concerning board. Children accompanied by mothers who were willing to give consent were included in the study. Children not accompanied by mothers; whose parents were not willing to give consent; who were taking medications for behavioral or sleep problems; whose mother had a history of uncontrolled medical and psychiatric illness or substance abuse disorder; and mothers who are not living with the child for the last 1 year were excluded from the study. A total of 50 children accompanied by mothers got selected after screening. Fifteen children were excluded from the study as they were not fulfilling the inclusion criteria. The aim of the study and method adopted were explained to all parents, and their consent was taken. Sociodemographic data were recorded in a specially designed pro forma. Physical deformities were assessed. The Behavioral Assessment Scale of Indian Children (BASIC)-MR was utilized in assessing the behavioral patterns in each child. The BEARS questionnaire (B = bedtime problems, E = excessive daytime sleepiness, A = awakenings during the night, R = regularity and duration of sleep, and S = snoring) was used to assess the sleep problems in children. Assessment of family burden was done by interviewing the mothers of the children using the Zarit Burden Scale.
Tools of the study
- A screening pro forma for children and their caregivers
- A semi-structured pro forma used for evaluation. It included:
- A sociodemographic profile sheet
- A clinical profile sheet
VSMS – It measures the differential social capacities of an individual. It provides an estimate of social age and social quotient (SQ) and shows a high correlation (0.80) with intelligence. It is designed to measure social maturation in the following eight social areas – self-help general, self-help eating, self-help dressing, self-direction, occupation, communication, locomotion, and socialization. The VSMS can be used for the age group of 0–15 years. Indian adaptation of the scale devised by Dr. A.J. Malin was used in the studySeguin Form Board – It is used to assess the participant's motor dexterity, visuomotor coordination, spatial organization, and speed and accuracy of performance and can be used in children as young as 3 years. The form board consists of ten differently shaped wooden blocks, and the participants are required to fit the differently shaped blocks into their respective slots on the form board. This is a culture-fair test and can be easily administered in 10 minBASIC-MR – It was developed by the National Institute for Mentally Handicapped. The BASIC-MR is available in two parts, namely Part “A” and Part “B.” The items included in Part A of the scale help to assess the current level of skill behaviors in a child with MR. The items included in Part B of the scale help to assess the current level of problem behaviors in a child with MR. Part B was used in this study. The reliability of Part B is 0.68. It consists of 75 items grouped under ten domains, namely violent and destructive behavior (kicking, pushing, hitting, pinching, spitting, attacking others, etc.); temper tantrums (excessive crying, screaming, stamps feet, and rolls on floor); self-injurious behavior (head banging, biting, cutting, hitting oneself, etc.); misbehavior with others (pulls objects from others, interrupts when others are talking, knocks things down, uses abusive language, etc.); repetitive behaviors (sucks thumb, rocks body, nods head, taps feet, etc.); odd behaviors (laughs to self, laughs inappropriately, talks to self, talks too much, picks noise, smells objects, etc.); hyperactive behaviors (does not pay attention to task in hand and does not sit or continue with task at hand for required time); rebellious behaviors (does not do what is told to do, does opposite of what is requested, continues to argue, takes very long intentionally to complete a task, and goes out of home/work place without informing); antisocial behaviors; and fears. The number of items within each domain varies. Scoring for items under the BASIC-MR Part B is carried out for each item in children with MR by rating them along a 3-point rating scale, namely, never (score 0), occasionally (score 1), and frequently (score 2). The maximum possible score for any child on the BASIC-MR Part B is 150BEARS Sleep Screening Algorithm – The “BEARS” instrument is divided into five major sleep domains, providing a comprehensive screen for the major sleep disorders affecting children in the 2–18-year-old range. Each sleep domain has a set of age-appropriate “trigger questions” for use in the clinical interview. Although the tool has not been evaluated for its psychometric properties, it has been shown to increase the amount of sleep information collected by physicians by two to ten foldsZarit Burden Scale – It was developed by Steven H. Zarit to assess the level of burden experienced by the principal caregivers of older persons with dementia and disabled persons. It has got 22 item scores ranging from 0 to 88, which is as follows: 0–20: no-to-mild burden, 21–40: mild-to-moderate burden, 41–60: moderate-to-severe burden, and more than 40: severe burden. The Cronbach's alpha value for the Zarit Burden Interview items was 0.93, and the intraclass correlation coefficient for the test–retest reliability of Zarit Burden Score was 0.89.
Statistical analysis was done using Statistical Package for the Social Sciences (SPSS) Version 23 (IBM, Chicago, USA). Frequency and percentage were used for qualitative data and mean for quantitative data. Pearson's correlation was used to find the relationship between various quantitative data. The level of significance used was 0.05.
| Results|| |
[Table 1] shows that the mean age of children included in our study was 11.15 years (±3.36), and the mean mental age was 4.75 years. The mean intelligent quotient (IQ) of the group was 43.88, and the mean SQ was 45.28. Majority of the children belonged to the age group of 13–15 years. Nearly 72% of the children were males, 62% of the children were uneducated, 28% were pursuing informal education, and only 10% were getting formal education. Around 52% of the children were living in rural area, 82% were Hindu by religion, and majority of them belonged to the families having monthly income of Rs. 6327–31,589.
The distribution of children according to the severity of disability shows that 44% of children were having mild ID, 36% were having moderate ID, 6% were having severe ID, while 14% belonged to the category of profound ID, as shown in [Figure 1].
|Figure 1: Distribution of children according to the severity of intellectual disability (%)|
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It was found in our study that 34% of the children were having speech impairment, 24% were having epilepsy, 12% were having cerebral palsy, 8% were having hearing impairment, and 6% were having locomotor disability, as shown in [Table 2]. None of them was having visual impairment. Among the sleep problems, bedtime problems were the most common (22%) followed by excessive daytime sleepiness (20%), awakenings during night (16%), and snoring (6%). Nearly 76% reported regularity of the sleep pattern.
The behavioral problems in children with ID and distribution of problems according to age and sex are summarized in [Table 3].
Among behavioral problems, it was seen that hyperactivity was the most common behavioral problem in these children present in 48% followed by violent and destructive behaviors in 30%, misbehavior with others in 18%, temper tantrums in 14%, odd behaviors in 16%, fears in 10%, and rebellious behaviors in 8%. Other behaviors that were less common were antisocial behavior (6%), repetitive behaviors (8%), and self-injurious behaviors (4%).
In relation to gender variable, the results indicate that 30.6% of male children and 28.6% of female children with ID showed violent and destructive behaviors, 50% of male children and 42.9% of female children showed hyperactivity, 19.4% of male children and 14.3% of female children showed misbehavior with others, and 16.7% of male children and 7.1% of female children showed temper tantrums. These observations demonstrate that more behavioral problems are present in male children with ID than female children.
In relation to age group variable, in 5–8 years' age group, 50% of children showed hyperactivity, 28.5% showed violent and destructive behaviors, 21.4% showed odd behaviors, 14.3% showed misbehavior with others, 14.3% showed fears, and 7.1% showed temper tantrums. In the age group of 9–12 years, 46.7% of children showed hyperactivity, 20% showed violent and destructive behaviors, 20% showed temper tantrums, 13.3% showed misbehavior with others, and 6.7% showed self-injurious behavior. In the age group of 13–15 years, 47.6% of children showed hyperactivity, 38.1% showed violent and destructive behaviors, 23.8% showed misbehavior with other, 14.3% showed temper tantrums, 14.3% showed rebellious behavior, 14.3% showed antisocial behaviors, 14.3% showed fears, 4.8% showed self-injurious behaviors, and 4.8% showed repetitive behaviors. No specific trend has been observed in the behavioral problems with the age of the participants.
The level of caregiver burden in mothers of the children is shown in [Figure 2]. Nearly 10% of the mothers reported having no or mild burden, 34% reported having mild-to-moderate burden, 32% reported having moderate-to-severe burden, while 24% had severe burden. Although the Zarit Burden Scale has not been divided into subdomains, it mainly assesses domains such as time restrain, embarrassment of having a child with ID, own health problems, disturbed social life, financial issues, and overdependence of child.
The more the severity of ID, the more is the caregiver burden, as shown in [Table 4].
There exists a negative correlation between the burden score and IQ and SQ, as shown in [Table 5]. IQ and SQ were positively correlated with a Pearson's correlation coefficient of 0.947 (P = 0.0001). IQ and SQ were negatively correlated with the burden score with a Pearson's correlation coefficient of −0.501 (P = 0.0001) and −0.492 (P = 0.0001), respectively.
| Discussion|| |
Of all the children with ID brought to the outpatient clinic of the department, 60%–70% have been given disability certification in the previous year. Parents who come to OPD for their children with intellectual disability are guided to get disability certificate and disability benefits covered under the RPWD act. The mean age of the children in our study was 11.15 years (SD – 3.3 years), which is in line with previous studies, in which the mean age ranged between 9 and 14 years., The mean IQ of children in our study was 43.88, which is similar to the mean IQ found in previous studies., The mean SQ of the study group was 45.28. IQ and SQ were positively correlated to one another. Hence, with increasing severity of retardation, social development also decreases. Similar results have been seen in a previous study also. Hence, the level of intellectual ability is related to the adaptive behavior shown by the children.
Nearly 72% of the children in this study were male, which corresponds to another study in which 65.8% of the children were male. According to the National Mental Health Survey, 2016, the prevalence of ID was high in males (0.69%) as compared to females (0.58%). In this study, 62% of children had never been to school, which may be due to the severity of ID or the behavioral problems.
It was seen in our study that 44% of children were having mild ID, 36% were having moderate ID, 6% were having severe ID, while 14% belonged to the category of profound ID. In another study, it was found that 43.4% of children were having mild ID, 34.2% were having moderate disability, 18.4% were having severe disability, while profound disability was seen in 2.6%. The results are comparable with similar percentages in mild and moderate categories, but in our study, more number of children were in the profound category. This finding may be due to the different method of sample collection as more number of profound disability cases presented for certification.
Physical comorbidities were common in our study sample. Similarly, in other Indian studies, epilepsy was seen in 15%–16% of the study sample, cerebral palsy was seen in 45%, and sensory deficits were seen in 3%–15% of the study sample., These comorbidities represent brain damage in antenatal or early neonatal period and contribute to multiple disabilities in these children.
In the present study, hyperactivity was the most common behavioral problem present in 48%, violent and destructive behaviors in 30%, misbehavior with others in 18%, and temper tantrums in 14%. Similar results were seen in a study conducted by Koshali, in which hyperactivity was the most common behavioral problem (64.34%) followed by violent and destructive behaviors (29.56%), odd behaviors (22.86%), rebellious behaviors (22%), misbehavior with others (20.86%), repetitive behaviors (12%), antisocial behaviors (14.78%), and fears (3.47%). In other similar studies also, behavioral problems were present in 30%–50% of children., Age-wise distribution did not reveal any statistically significant difference among participants; however, in contrast to this in a previous Indian study, higher prevalence of behavioral problems was found in younger age groups (6–11 years) than the older ones (12–14 years).
A comparative study of emotional and behavioral problems in children and adolescents with and without ID showed that both mild and moderate ID children had significantly higher mean scores on all child behavioral checklist scales. The most prominent problematic behaviors of mild ID children compared with children without ID were social problems, attention problems, and aggressive behavior, and moderate ID had an increased risk for social problems, attention problems, and withdrawal and thought problems.
Among sleep problems, bedtime problems were the most common (22%) followed by excessive daytime sleepiness (20%), awakenings during night (16%), and snoring (6%). Around 76% of the children reported regularity of the sleep pattern. Similar results were seen in another study. Prevalence rates for sleep problems ranged between 25.5% and 36.2%. In another study, severe settling problems, night waking, and early waking were present in 4.2%, 10.8%, and 4.2% of cases, respectively; 16.1% of children had at least one type of sleep problem.
The mean Zarit burden score in mothers of these children was 44.84. Results from a previous comparative study show that the mean score was 37.03 in a psychiatric hospital sample and 23.33 in a sample taken from a rehabilitation center. This shows a high mean score in our study, which may be due to the different method of sample collection. Their own health has suffered due to their involvement with the child. They usually feel embarrassed over the child's behavior, and their social life has suffered because of having a child with ID.
The level of caregiver burden increased as the level of ID increased, which is similar to previous studies. Higher rates of depression and anxiety have been reported in parents of children with IDs.,
However, in contrast to this, an Indian study found that parents who were having a mentally challenged child in the family did not consider it a burden, but they were willing to see the situation more positively and overcome the situation gracefully.
Limitations of the study
The sample size of 50 appears inadequate for a comprehensive insight into the problem. No control group was taken in this study. Comparison of children with disability and normal children would have thrown more light on other factors responsible for the burden in mothers. Social support and other stressors were not assessed while assessing burden among caregivers. The sample was selected from children presenting for disability certification at a tertiary care hospital, which cannot represent the whole population.
| Conclusion and Implications|| |
The prevalence of physical and behavioral problems in these children was high. The high level of burden was associated with increased level of disability, being the maximum in the caregivers of children with severe-to-profound ID. Most of the children with ID remain deprived of education, so special schooling should be encouraged for these children. Because many comorbidities are associated with ID, there is a need of a multidisciplinary team to involve in better management of these children. Mothers of these children should be provided adequate information regarding the disability, and provision of caring skill training services for dealing with a disabled child is the need of the hour. A study can be planned comparing the burden in mothers of children with ID and mothers of typically developing children in future.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Figure 1], [Figure 2]
[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]