Caregiver burden in children with intellectual disability: Does special school education help?

BACKGROUND: Caregivers are playing a vital role in mentally ill patients in India. Families of children with intellectual disability encounter a high degree of stress such as physical, emotional, and financial. AIM: The aim of this study was to compare and evaluate the caregiver burden and depression between the special school-going children and nonschool-going children with intellectual disability.
MATERIALS AND METHODS: The present study was conducted on caregivers of patients with intellectual disability at Radianz Health Care and Research Private Limited, Ahana Hospitals, Akash Special School, and M. S. Chellamuthu Trust and Research Foundation, Madurai. The Zarit Burden Interview scale was utilized to assess the level of burden experienced by the caregivers. The Major Depression Inventory scale was utilized to assess the severity of depression experienced by the caregivers. The Binet Kamat Test of Intelligence was administered by a psychologist to assess the IQ level of the children.
RESULTS: Totally 80 caregivers were participated in the study. The mothers of children with intellectual disability suffered from burden and depression when compared to the fathers (P < 0.0001). The parents of nonschool-going children had a higher level of burden and depression as compared to the parents of special school-going children (P < 0.0001).
CONCLUSION: Special school is playing a vital role for children with intellectual disability. It can be reasonably concluded from the study that both the groups face burden and depression. However, the severity of burden and depression is comparatively higher among parents of nonschool-going children. Copyright:

A mental disorder has long been an issue in the society. Around 25% of individuals are affected by mental and behavioral disorders during their lifetime. It is estimated that one in four families has at least one member with mental and behavioral disorders.[1] Mental retardation is a condition of developmental deficit, starting in childhood, which leads to significant limitation of cognition or intellect and poor adaptive functioning in their daily life.[2] Overall 10%–20% of children and adolescents experience mental disorders.[3] Children with mental disorders face significant difficulties with stigma, isolation, and discrimination, in addition the absence of access to health awareness and education facilities, deprived of their basic human rights.[4] In the world, around 450 million people experience the ill effects of a mental or behavioral disorder, and every year, nearly one million people commit suicide.[5]

In India, around 2% of the population is affected by intellectual disability. The prevalence of intellectual disability in India varies from 0.22% to 32.7%. Mental disorder is a significant burden on family members. Patients with mental retardation are more and more dependent on their caregivers depending on the severity of their illness.[6] Family members are the primary caregivers of people with mental illness. They give physical and emotional support and have to bear the financial expenses which are associated with mental health treatment and care.[7]

A caregiver is a person who supports and cares for some person diagnosed with chronic or debilitating medical condition. Psychiatric problems have a significant effect on both patients and their caregivers.[8] Psychiatric patients need aid or supervision in their day-by-day activities, and this frequently puts a significant trouble on their caregivers; subsequently, the caregivers often suffer from mental and health problems.[9] Caregiver burden refers to a high level of stress that may be accomplished by individuals who are caring for another person with some kind of illness. A family of children with intellectual disability encounters a high degree of stress such as physical, emotional, and financial. There are numerous issues of having a mentally retarded child in the family. The issues are mostly identified with the social ridicule and social stigma.[1011]

An intellectual disability child in the family is generally a serious stress factor for their parents. In India, the larger part of people with intellectual disability has generally been taken care by their family members. In today’s advanced society, this home-based care has brought about many unwanted consequences such as changes in the social system (e.g., separation of joint families) and affects the economic system (e.g., unemployment).[12]

Special school is a school for children who have intellectual disability, behavioral problem, or physical disability. Special school provides opportunities for children with intellectual disability to develop their daily living skills, get basic education, and develop their capacities. Since it helps to develop the child’s personal and social adequacy,[13] it might help to reduce the parent’s burden and stress.

A previous study reported that the parents of special school-going children had mild-to-moderate burden,[14] whereas parents of special nonschool-going children had a severe level of burden.[15]

Although there are many studies that have discussed the stress, burden, and depression of parents of intellectual disability children, there has been no comparative research done with special school-going children and nonschool-going children. This study was aimed to investigate and compare the degree of burden and depression among parents of special school-going children and nonschool-going children.

MATERIALS AND METHODS

The present study was conducted for the caregivers of patients with intellectual disability at Radianz Health Care and Research Private Limited, Ahana Hospitals, Akash Special School, and M. S. Chellamuthu Trust and Research Foundation, Madurai. The study was conducted for a period of 4 months, there were 98 individuals approached for this study, 8 patients were screen failure due to chronic physical illness, and 10 caregivers did not give consent in this study. Totally 80 caregivers were selected and enrolled in the study and divided into two arms. The one arm consists of 40 intellectual disabled children who are going to special school and their caregivers. The second arm consists of 40 intellectual disability children who have never been to a special school and their caregivers. A semi-structured questionnaire was developed to collect the sociodemographic details of children and their caregivers.

Inclusion criteria

Caregivers staying with the child since the onset of illness

Children diagnosed with intellectual disability as per the DSM-5 criteria

Caregivers living with the child in the same household

Caregivers who should be educated were included in the study.

Exclusion criteria

Caregivers who were not blood related to the children

Past or current psychiatric or chronic physical illness

Caregivers refused to give consent

Caregivers who are taking care of more than one child were excluded from the study.

The investigator explained the study details to the caregivers and obtained the informed consent before enrollment into the study,

Caregivers’ burden assessment

In this study, standard instrument was utilized to evaluate the caregivers’ burden: Zarit Burden Interview[16] scale was utilized to assess the level of burden experienced by the caregivers. The scale composed of 22 items; each question is scored on a 5-point (0–4) Likert scale ranging from never to nearly always present. Aggregate scores range from 0 to 88 and higher scores indicate higher burden. The Cronbach’s alpha value was 0.93; the intraclass correlation coefficient for the test–retest reliability of the Zarit Burden score was 0.89.[17]

Caregivers’ depression assessment

The Major Depression Inventory[18] scale was utilized to assess the severity of depression experienced by the caregivers. The scale composed of 10 items; each question is scored on a 5-point (0–4) Likert scale ranging from no time to all the time. Again, for items 8 and 10, alternative a (or) b with the highest score is considered. The severity was measured based on score which ranges from 0 to 40. The scale has good reliability as well as validity.[19]

Intelligence quotient assessment

The Binet Kamat Test of Intelligence[20] is a standardized test that assesses intelligence and cognitive abilities in children with intellectual disability. It has both verbal and performance tests. The Binet Kamat Intelligence scale has been standardized for Indian population, reliability and validity for this scale is well established.[21]

Ethical committee approval

Ethical committee approval was sought and obtained from the Institutional Ethics committee, Radianz Health Care and Research, Madurai, Tamil Nadu.

Statistical tools

Statistical analysis was done with the help of computer using Epidemiological Information Package (EPI 2012) developed by the Centers for Disease Control and Prevention Using this software, range, frequencies, percentages, means, standard deviations, “t” value, Chi-square, and “P” values were calculated. t-test and analysis of variance were used to test the significance of difference between quantitative variables and Yates and Fisher’s Chi-square tests for qualitative variables. P < 0.05 is taken to denote significant relationship.

RESULTS

Table 1

Mean age of the children in special school group was 10.1± 2.6 and non-school group mean was 10± 2.5 [Figure 1]. Both group had high level of male children than female [Figure 2] and maximum number of children were first born, followed by of middle born and last born [Figure 3]. In special school group, 52.5% children had moderate level of intellectual disability and 15% had severe level of intellectual disability. In non-school group,40% children had moderate level of intellectual disability and 25% had mild level of intellectual disability [Figure 4]. There exists no statistically significant difference in the age, sex and other demographic characterised of the children in both the groups [Table1].

Figure 1

Mean age of children

Figure 2

Sex distribution of children

Figure 3

Birth order of children

Figure 4

IQ Level of children

Table 1

Profile of children

Variable	Parameter	Value for			t/Chi-square test
		Special school group	Nonschool group	P
Cases studied	Number	40	40	-
Child
Age (years)	Mean (SD)	10.1 (2.6)	10.0 (2.5)	0.828 not significant	-
Sex, n (%)	Male	22 (55)	21 (52.5	0.5 not significant	0.050
	Female	18 (45)	19 (47.5)
Birth order, n (%)	First	25 (62.5)	28 (70)	0.1 not significant	0.570
	Middle	8 (20)	7 (17.5)
	Last	7 (17.5)	5 (12.5)
IQ Level, n (%)	Mild	13 (32.5)	10 (25)	0.5 not significant	4.267
	Moderate	21 (52.5)	16 (40)
	Severe	6 (15)	14 (35)

IQ – Intelligence quotient; SD – Standard deviation

Table 2

In both groups, caregiver’s mean age was 35.1± 5 [Figure 5]. In each group, out of 40 caregivers 20 (50%) were male and 20 (50%) were female. With regard to relationship of caregivers 50% of father and 50% of mother enrolled in both group [Figure 6]. In both groups, majority of the subjects had completed secondary level of education [Figure 7] and most of the caregivers belong to middle class category [Figure 8]. There exists no statistically significant difference in the age, sex and other demographic characterised of the care givers in both the groups [Table2].

Figure 5

Mean age of caregivers

Figure 6

Relationship of caregivers

Figure 7

Education of caregivers

Figure 8

Economic status of caregivers

Table 2

Profile of caregivers

Variable	Parameter	Value for			t/Chi-square test
		Special school group	Nonschool group	P
Cases studied	Number	40	40	-
Caregivers
Age	Mean (SD)	35.1 (5.0)	35.1 (5.0)	0.9463 not significant	-
Sex, n (%)	Male	20 (50)	20 (50)	0.1 not significant	0.000
	Female	20 (50)	20 (50)
Relationship, n (%)	Father	20 (50)	20 (50)	0.1 not significant	0.000
	Mother	20 (50)	20 (50)
Education, n (%)	Primary	10 (25)	12 (30)	0.2 not significant	0.786
	Secondary	19 (47.5)	18 (45)
	Undergraduate	6 (15)	7 (17.5)
	Postgraduate	5 (12.5)	3 (7.5)
Economic status,n (%)	Lower	20 (50)	22 (55)	0.1 not significant	0.202
	Middle	11 (27.5)	10 (25)
	Upper	9 (22.5)	8 (20)

SD – Standard deviation

Table 3

The burden score in the special group and at non-school group were 57.4±5.3 and 66.0±7.0 respectively [Figure 9]. Similarly the depression scores in the two groups were 27.0±4.6 and 31.6±4.3 respectively [Figure 10]. These two scores had statistically significant difference in the two groups. (P < 0.0001) [Table 3].

Figure 9

Burden score

Figure 10

Depression score

Table 3

Burden score and depression score

	Burden score		Depression score
	Special school group, n (%)	Nonschool group, n (%)	Special school group, n (%)	Nonschool group, n (%)
Severity score
Mild	1 (2.5)	-	11 (27.5)	3 (7.5)
Moderate	28 (70.0)	12 (30)	29 (47.5)	9 (22.5)
Severe	11 (27.5)	28 (70)	10 (25.0)	28 (70.0)
Total	40 (100)	40 (100)	40 (100)	40 (100)
Score
Range	41-69	52-77	20-35	20-36
Mean (SD)	57.4 (5.3)	66.0 (7.0)	27.0 (4.6)	31.6 (4.3)
P	<0.0001 significant		<0.0001 significant
t/Chi-square test	16.669		14.810

SD – Standard deviation

Table 4

Age, Sex, Birth order, IQ of the child do not have any significant impact on the burden score and depression score of the caregivers. (P >0.0001). Similarly age, educational and economic status of the caregivers have no significant association with the burden and depression scores. (P > 0.0001). But sex of the caregiver has a significant relationship with the score. Males (Father) had lower burden and depression scores (59.9±7.5 and 28.0±5.3) than females (Mother) (63.4±7.3 and 30.6±4.3) [Figures 11 and 12 and Table 4].

Figure 11

Burden score and depression score

Figure 12

Relationship of caregivers and burden score

Table 4

Association between burden score/depression score and other variables

Variable	Group	Burden score		Depression score
		Mean (SD)	P	Mean (SD)	P
Child
Age (years)	Up to 10	61.8 (7.9)	0.8497 not significant	29.1 (5.4)	0.7109 not significant
	Above 10	61.5 (7.2)		29.5 (4.4)
Sum of squares	Between groups	2.069		3.314
	Within groups	4464.131		1948.636
Sex	Male	61.3 (7.1)	0.6829 not significant	29.3 (5.1)	0.9937 not significant
	Female	62.0 (8.0)		29.3 (4.9)
Sum of squares	Between groups	9.785		0.002
	Within groups	4456.415		1951.948
Birth order	First	61.5 (8.2)	0.1083 not significant	29.6 (4.6)	0.249 not significant
	Middle	60.2 (7.1)		28.4 (5.3)
	Last	64.6 (6.9)		30.6 (4.7)
Sum of squares	Between groups	13.502		1.962
	Within groups	4452.698		1949.988
IQ Level	Mild	61.9 (7.3)	0.89 not significant	29.2 (5.1)	0.962 not significant
	Moderate	60.8 (7.0)		29.6 (4.3)
	Severe	61.3 (9.1)		29.4 (5.4)
Sum of squares	Between groups	250.484		69.239
	Within groups	4215.716		1882.711
Caregivers
Age (years)	Up to 30	61.5 (7.1)	0.9077 not significant	28.9 (5.1)	0.7106 not significant
	Above 3	61.7 (7.7)		29.4 (5.0)
Sum of squares	Between groups	0.775		3.603
	Within groups	4465.425		1948.347
Sex	Male	59.9 (7.5)	0.0366 significant	28.0 (5.3)	0.016 significant
	Female	63.4 (7.3)		30.6 (4.3)
Sum of squares	Between groups	245.000		140.450
	Within groups	4221.200		1811.500
Relationship	Father	59.9 (7.5)	0.036 significant	28.0 (5.3)	0.016 significant
	Mother	63.4 (7.3)		30.6 (4.3)
Sum of squares	Between groups	245.000		140.450
	Within groups	4221.200		1811.500
Education	Primary	61.2 (7.4)	0.604 not significant	29.4 (4.5)	0.529 not significant
	Secondary	61.8 (6.6)		29.4 (4.3)
	Undergraduate	63.6 (7.9)		30.3 (5.9)
	Postgraduate	59.1 (11.4)		27.0 (7.5)
Sum of squares	Between groups	106.705		55.657
	Within groups	4359.495		1896.293
Economic status	Lower	62.4 (7.0)	0.6457 not significant	29.9 (4.2)	0.5041 not significant
	Middle	60.9 (7.0)		28.8 (4.7)
	Upper	60.8 (9.5)		28.4 (6.9)
Sum of squares	Between groups	50.45		34.425
	Within groups	4415.749		1917.525

SD – Standard deviation; IQ – Intelligence quotient

Table 5

Similarly there exists a high degree of association between burden score and depression score [Figure 13 and Table 5].

Figure 13

Relationship of caregivers and depression score

Table 5

Association between burden score and depression score

Burden score	Depression score, mean (SD)
Mild	20.0 (2.4)
Moderate	25.7 (3.5)
Severe	33.2 (2.8)
P	<0.0001 significant
Sum of squares
Between groups	1191.806
Within groups	760.144

SD – Standard deviation

DISCUSSION

Children with intellectual disability are a wellspring of interminable stress to the caregivers, and it can influence them adversely from numerous points of view.[22] The study revealed that most of the caregivers are suffering from depression, and the same has been reported in the majority of the studies.[2324]

Mothers of intellectual disability children have poorer mental well-being than mothers of nondisabled children, and the mothers of intellectual disability children highly suffered from depression.[23252627] In this study, both the groups of mothers of intellectual disability children suffered more from burden and depression as compared to the fathers. All these mothers had not at one time been diagnosed by a clinician for depression. The responsibility of caring for children usually falls on the mother. In India, it is more acceptable that mothers usually take up the role of the caregiver. It may lead to depression due to the high level of stress and burden.

A previous study reported that age and education of the caregivers do not have any significant associations with burden.[5] The present study also revealed that age, education, and economic status of caregivers do not have any significant association with burden and depression. The sociodemographic characteristics of the children do not have any significant association with burden and depression.

The result of the study shows that the caregivers of both the groups experienced burden and depression. However, the extents of burden and depression symptoms are high in parents of nonschool-going children than the parents of special schoolchildren. The nonschool group caregivers had high levels of depression and burden as compared to the special school group caregivers. In the nonschool group, most of the caregivers had a severe burden, and none of the caregivers had a mild burden. This study revealed that there is a significant association between caregivers’ burden and depression. A similar finding was reported in previous study.[28]

Caregiving leads to limit participation in a variety of roles and affect the leisure time of caregivers.[29] Special schoolchildren spend around 6 h in school, and the caregivers get leisure time which may reduce the burden and stress level. The special school takes the responsibilities of the caregivers and trains the children in their daily activities and functional academics.

Participants were psychoeducated about the illness, and supportive counseling was also given. Participants were psychoeducated about the illness and they also received supportive counselling and training to improve the coping skills, managing emotional problems and dealing with stress and burden to improve their quality of life. Group approaches for parent counseling and training were also done to educate, orient, and to gain emotional support among themselves. Supportive counseling was given to the parents with mild depression, whereas patients with moderate and severe depression were treated with psychotropics.

Despite the various levels of children with intellectual disability, the special school is playing a vital role, and it appears to reduce the level of burden in caregivers. Special schools set goals for each child and are tailored to the child’s individual needs and ability. The special schools are closely involved in the child’s behavioural, academic, emotional and social development thereby prepare the students to feel comfortable in social circumstances and to inculcate a better social acceptable behaviour which may in turn decrease the depression and the burden on the parents. The special schools engage the children for a portion of the day. They relieve and reduce the burden and stress of the caregivers for that period. It is recommended that children with intellectual disability should be put in the special school which will help in child development and reduce the caregiver burden.

This study has strengths and few limitations. It was primarily limited by its small sample size. For this reason, these findings cannot generalize to the broader community based on the study alone. Directions for future research could include a larger sample size and other family caregivers such as siblings and grandparents. Caregivers’ personality traits may have affected the perception of burden and depression, and these details were not taken into consideration.

CONCLUSION

Caregivers of both special school-going children and nonschool-going children with intellectual disability have high burden and depression. However, the severity of burden and depression is significantly higher among caregivers of nonschool-going children.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.