Depression and anxiety in parents of children and adolescents with intellectual disability.

BACKGROUND: Parents of Intellectual Disabled (ID) children and adolescents are subjected to higher caregiver burden which is associated with Depression and Anxiety. There are very few studies which have assessed these morbidities in an industrial population. AIMS AND
OBJECTIVES: The aim of this study was to explore the prevalence of Depression and Anxiety and its psychosocial correlates among these parents.
MATERIALS AND METHODS: The study was a Cross-sectional observational study, conducted at the Psychiatry unit of a tertiary care multi-specialty hospital in Maharashtra. It examined 99 parents (99 fathers and 98 mothers) of 99 children and adolescents (up to 18 yrs of age) with Intellectual Disability for Depression and Anxiety. Assessment was done using Hospital Anxiety and Depression Scale (HADS).
RESULTS: 94% of mothers and 66.7% of fathers were found to have either anxiety or depressive symptoms, or both. Among mothers, 91.8% had scores suggestive of anxiety, 66.3% for depression and 64.3% for both anxiety and depression. Among fathers 57.6% had had scores suggestive of anxiety, 35.4% for depression and 26.3% for both. The association was significant between HADS Depression sub-scores of parents and child's ID severity, diagnosis of Down's syndrome and lack of family support (P-value <0.05). In addition significant association was also found between father's anxiety and depression scores and age of father and medical co-morbidities in the child (P-value <0.05).
CONCLUSION: Significantly high proportions of parents were found to have anxiety /depressive symptoms or both. These symptoms appear to be associated with severity of ID and lack of family support and were significantly more in the primary care giver (mothers). Copyright:

Intellectual disability (ID) has an overall prevalence of 1%–3%.[1] It is well researched that care of children with ID increases psychological, social, and financial distress of the whole family, particularly parents. They experience much more stress than do parents of normally developing children as they are usually the only constant caregivers.[234] Chronic exposure or “everyday” stress in occupational, financial, or personal settings alone or in combination with acute stress serves as a powerful precipitant of psychiatric morbidity.[5] Emergence of problem behavior in parents and siblings of children with ID can manifest either internally or externally.[6] Internally, it may manifest with the features of depression, somatic complaints and anxiety and externally with the features of distress directed outwards and encompasses excessive irritability, quarrelsome behavior, verbal and physical aggression, and conduct problems.[78]

Severe ID is significantly associated with high stress on parents, low family support, and poor family atmosphere.[9] Studies from Western countries have found the prevalence of depression among mothers of children with ID to be around 50%.[10] However, Indian studies show the prevalence of depression in mothers of children with ID up to 85%.[111213] In another study, 44% of the fathers had psychological distress in the form of anxiety, depression, and somatic complaints.[14] In this study, the strongest predictors of mental health of fathers were children's behavior problems, daily stress arising out of father's own needs, burden of child care, and low level of parent satisfaction.

Such parents require psychological support, which is often not addressed because of exclusive focus on the child during the evaluation. A study analyzed that the quality of parent's interaction with their disabled children can have a profound impact on the therapeutic progress achievable by the child.[15] Hence, psychological impact of ID on parents should inarguably be considered one of the important evaluation during the overall assessment of the child.[15] If the parents are themselves are distressed, it may affect their capacity in taking care of these children and adolescents.

Therefore, assessment of the depression and anxiety among parents of children and adolescents with ID is imperative. It helps in the assessment and severity of psychiatric comorbidities in these parents and also evaluates the need to focus on the remedial measures for parents.

There are many studies which have evaluated burden of care and stress among parents of children and adolescents with ID, but few have assessed the prevalence of anxiety and depression among them,[3161718192021] Moreover, there are very few studies to assess the same in industrial workers, who have a unique set of challenges and difficulties such as difficult working conditions, frequent change of place of job, prolonged separation from family members, and less available family support for care and upbringing of these children.

This study was therefore undertaken with the aim of determining the prevalence of depression and anxiety in the industrial workers having a child with ID and to explore the difference in depression and anxiety levels among primary caregiver and the other parent.

MATERIALS AND METHODS

This study followed a cross-sectional, observational design and was conducted in the psychiatry unit of a tertiary care hospital in Maharashtra. The study population comprised of parents of children and adolescents below the age of 18 years, with ID (I. Q. below 70), attending the outpatient department (OPD) for IQ assessment of their children and/or disability certification for ID. The fathers were all industrial workers in a transferable job. Ethical clearance was taken from the Institutional Ethical Committee and data were collected from August 2017 to October 2019 in accordance with the Declaration of Helsinki 1975, revised in 2000. They were living with these children and adolescents for more than a year. Parents with preexisting chronic medical illness before the birth of affected child, preexisting psychiatric illness before the birth of affected child and supporting another family member with ID, chronic medical or psychiatric illness were excluded.

The sample size was calculated to be 80 and 61, using mean anxiety score of 11.0 and standard deviation (SD) of 4.40 and mean depression score of 8.6 and SD of 3.92, respectively, from a previous study.[22] Thus, comparing both the samples, sample size of 80, being larger was chosen and method of nonprobability purposive sampling was used to collect the data.

Informed consent was obtained from the parents attending OPD who met the inclusion criteria and exclusion criteria. Information regarding psychosocial correlates was gathered using sociodemographic pro forma. Psychological morbidity was assessed by the Hospital Anxiety and Depression Scale (HADS).[23] It was administered by the authors themselves. The HADS has been found to be a valid scale in assessing the symptom severity and domains of anxiety disorders and depression in both somatic, psychiatric and primary care patients, and in the general population,[2324] A sub-score of 8 or more in respective subset is a definitive indicator of anxiety or depression. Both English and the validated Hindi version of the scale were used. The sensitivity and specificity for both HADS-anxiety (HADS-A) and HADS-depression (HADS-D) is approximately 0.80.[23] Reliability (Cronbach's α) of HADS is 0.80–0.93 for the anxiety and 0.81–0.90 for the depression subscales. Significant correlation with both the anxiety and depression subscales supports the validity of the instrument.[24]

Family support was assessed during interview, by asking about the parents if anybody from their immediate or extended family was staying with them for taking care or to help them in taking care of their intellectually disabled children and adolescent. If the answer to this question was “Yes”, family support was taken as being present. If the answer was “No”, absence of family support was assumed.

Statistical analysis was performed using the IBM SPSS Statistics for Windows, Version 25.0. (Armonk, NY: IBM Corp.). Qualitative data variables were expressed using frequency and percentage (%). Quantitative data variables were expressed by mean and SD. The Chi-square test and Fisher's exact test were used to find the association between anxiety and depression of caregivers with various qualitative data variables. The power of the study was adjusted at 80%, and P < 0.05 was considered statistically significant.

RESULTS

69.7% of the children and adolescents with ID were males. 46.5% were in the age group of 6–10 years. 43% of children and adolescents had mild level of ID and 40% had moderate level of ID [Table 1]. 53.6% had various behavioral comorbidities and 32.3% had various medical comorbidities [Table 2].

Table 1

Sociodemographic details of children and adolescents with mental retardation

	Number of children and adolescents with MR, n (%)
Age group
≤5	20 (20.2)
6-10	46 (46.5)
11-15	27 (27.3)
>15	6 (6.1)
Gender
Male	69.7 (69)
Female	30.3 (30)
MR level
Mild	43 (43.4)
Moderate	40 (40.4)
Severe	13 (13.1)
Profound	3 (3.0)

MR - Mental retardation

Table 2

Comorbidities of children and adolescents with mental retardation

Co-morbidity	Frequency (%)
Behavioural co-morbidities
Normal	46 (46.4)
Hyperactivity	18 (18.18)
Repetitive behaviour	20 (20.2)
Aggression	16 (16.16)
Medical co-morbidities
Normal	67 (67.7)
Epilepsy	16 (16.2)
Down’s syndrome	12 (12.1)
Prader Willi syndrome	2 (2.0)
Cerebral palsy	3 (3.0)

All parents were Indian, with representation from nearly all zones of the country. Around 80% of father and 67% of mother were in the age group of 31–40 years, respectively. Around 47% of fathers and 51% of mothers were educated up to 10th [Table 3]. All the fathers were employed industrial workers. All the mothers were homemakers. Mothers were the primary caregivers in all these cases and the quantum of time spent by the mother with these children and adolescents was much more than that of the father. Hence, the term primary caregiver has been used interchangeably with the mother. The single most important causes of psychological stress in these parents were outcome of the illness and worries about the care of these children in future after their own demise. 62.63% had reported to psychiatry OPD for IQ assessment of their children and 37.37% for disability certification for ID.

Table 3

Sociodemographic details of parents of children and adolescents with mental retardation

	Father	Mother
Age group of parents
≤30	9 (9.1)	27 (27.2)
31-40	80 (80.8)	67 (67.7)
>40	10 (10.1)	5 (5.1)
Total	99 (100.0)	99 (100)
Education level of parents
Up to 10th std	47 (47.5)	51 (51.5)
Up to 12th std	30 (30.3)	31 (31.3)
Up to graduate	19 (19.2)	12 (12.1)
Postgraduate	3 (3.0)	5 (5.1)
Total	99	99 (100.0)

On evaluation of depressive symptoms by HADS-D subscale, 35.4% of fathers and 66.3% of mothers had scores suggestive of some severity of depression (score >7). Around 27.3% of fathers and 32.7% of mothers had scores suggestive of mild level of depression (score 8 ≤11). In remaining, around 6.1% of fathers and 25.5% of mothers had scores suggestive of moderate level of depression (score 12 ≤14). Only 2% of fathers and 8.2% of mothers have scores suggestive of severe level of depression (score 15 ≤21). These results showed that as compared to fathers almost twice the number of mothers had higher scores on HADS depressive symptoms subscale [Table 4] and these were statistically significant (P < 0.05).

Table 4

Scores of fathers and mothers on Hospital Anxiety and Depression Scale-depression and anxiety subscale

	Father, n (%)	Mother, n (%)
Depression
No depression	64.6
Mild	27.3	32.7
Moderate	6.1	25.5
Severe	2.0	8.2
Total	99	98
Anxiety
No anxiety	42 (42.4)	8 (8.2)
Mild	37 (37.4)	39 (39.8)
Moderate	19 (19.2)	44 (44.9)
Severe	1 (1)	7 (7.1)
Total	99 (100)	98 (100)

Mild: 8-10, Moderate: 11-14, Severe: 15-21

On evaluation of anxiety in these parents by HADS-A subscale, scores of 42.4% of fathers and 8.2% of the mothers were below the threshold of anxiety (score ≤7). 37.4% of fathers and 39.8% of mothers had scores suggestive of mild level of anxiety (score 8 ≤11). In remaining, around 19.2% of fathers and 44.9% of mothers had scores suggestive of moderate level of anxiety (score 12 ≤14). Only 1% of fathers and 7.1% of mothers had scores suggestive of severe level of anxiety (score 15 ≤ 21). These results showed that as compared to fathers almost twice the number of mothers had higher scores on HADS anxiety subscale [Table 4], and these were statistically significant (P < 0.05).

Parents with moderate-to-severe scores were referred in the adult psychiatry unit for further expert consultation and management. Only 17% of the parents had family support from close family members or extended family in taking care of their intellectually disabled children.

With respect to the factors associated with depression in these parents, significant association was found between depression scores and Down's syndrome, severity of ID, and family support [Table 5]. However, in anxiety, the association was found to be significant with gender and Prader-Willi syndrome in mothers but not in fathers [Table 6].

Table 5

Effect of sociodemographic variables of children and adolescents with mental retardation on depression in parents

	Depression in mother		P	Depression in father		P
	Yes	No		Yes	No
Age group
≤5	13	7	0.165	7	13	0.086
6-10	32	14		15	31
11-15	14	12		8	19
>15	6	0		5	1
Gender
Male	42	26	0.150	24	45	0.857
Female	23	7		11	19
MR level
Mild	17	26	<0.001	8	35	<0.001
Moderate	35	5		15	35
Severe	10	2		9	4
Profound	3	0		3	0
Behavioural comorbidities
Normal	30	16		18	29
Hyperactivity	9	9	0.114	3	15	0.064
Repetitive behavior	16	4	0.139	10	10	0.134
Aggression	11	5	0.800	5	11	0.689
Medical comorbidities
Normal	39	28		16	51
Epilepsy	11	4	0.497	6	10	0.819
Down’s syndrome	11	1	0.043	9	3	0.002
Prader-Willi syndrome	1	1	0.638	1	1	0.670
Cerebral palsy	3	0	0.203	3	0	0.017
Family support
Yes	17	0	0.001	13	4	< 0.001
No	48	33		22	60
Age group of parents
≤30	19	8	0.196	0	9	0.006
31-40	41	25		28	52
>40	5	0		7	3
Education of parents
Up to 10th std	32	18	0.614	17	30	0.530
Up to 12th std	20	11		8	22
Up to graduate	10	2		9	10
Postgraduate	3	2		1	2

MR - Mental retardation

Table 6

Effect of sociodemographic variables of children and adolescents with mental retardation and social support on anxiety in parents

	Anxiety in mother		P	Anxiety in father		P
	Yes	No		Yes	No
Age group
≤5	20	0	0.081	10	10	0.175
6-10	43	3		26	20
11-15	21	5	15		12
>15	6	0		6	0
Gender
Male	60	8	0.049	39	30	0.748
Female	30	0		18	12
MR level
Mild	37	6	0.272	19	22	0.082
Moderate	39	1		25	15
Severe	11	1		10	3
Profound	3	0		3	0
Behavioral comorbidities
Normal	33	3		16	21
Hyperactivity	15	3	0.292	10	8	0.790
Repetitive behavior	18	2	0.999	13	7	0.214
Aggression	15	1	0.581	9	7	0.757
Medical comorbidities
Normal	62	5		38	29
Epilepsy	13	2	0.535	8	8	0.537
Down’s syndrome	11	1	0.922	7	5	0.921
Prader-Willi syndrome	1	1	0.042	1	1	0.840
Cerebral palsy	3	0	0.578	3	0	0.127
Family support
Yes	16	1	0.706	13	4	0.083
No	74	7		44	38
Age group of parents
≤30	25	2	0.763	5	4	0.091
31-40	60	6		43	37
>40	5	0		9	1
Education of parents
Up to 10th std	43	7	0.188	26	21	0.929
Up to 12th std	30	1		17	13
Up to graduate	12	0		12	7
Postgraduate	5	0		2	1

MR - Mental retardation

DISCUSSION

This study aimed to assess depression and anxiety in parents of children and adolescents with ID in industrial workers of India. Earlier studies have found anxiety, depression or both, in a large number of parents of children with ID, significant enough to require mental health services and support.[2526]

This study showed that 35.4% of fathers and 66.3% of mothers had significant depressive symptoms (above cutoff score of 7). It suggests that every second parent had significant level of depression. The results are comparable with previous studies that had shown the prevalence of depression in these parents in range of 39%–63%.[121922272829] With respect to anxiety, 57.6% of fathers and 91.8% of mothers had significant anxiety symptoms (above cutoff score of 7). These results are higher than results 38%–75% reported by previous studies.[1222272830]

It is hypothesized that the higher anxiety and depression in the parents of this study may be due to:

The migratory nature of job profile of these industry workers with uncertainty in the availability of resources required (help from family members, social support in the form of neighborhood and trustworthy friends, and domestic help) for care and upbringing of these children. This study found that the available family support with these parents was minimal (17%)

Higher prevalence of behavioral comorbidities (50%) in children and adolescents

Use of different instrument (HADS) to assess anxiety rather than clinical interview and use of criteria of ICD-10 or other tools like Hamilton Rating Scale (HAM-A, HRSD) or Depression, Anxiety, and Stress Scale which have been used in other studies.[232431]

Depression and anxiety scores were not significantly associated with the age of the father or mother. It suggests that irrespective of the age of the child or adolescent, both the parents were under psychological stress. However, the results have not been linearly compared with respect to advancing age. Further, by the time, these parents would have arrived in our OPD for IQ assessment or disability certification, they would have realized and accepted the fact that ID is a permanent condition. It might have added to their anxiety and depression.

There was no association found between behavioral comorbidities in the child and anxiety or depression in the parents. Similarly, there was no association between medical comorbidities in the child and anxiety in the parents except in case of Prader–Willi Syndrome where association was found to be significant in mothers. However, since there were only two cases of Prader–Willi Syndrome, not much credence can be given to this finding. The only association between the nature of medical co-morbidities was in Down's syndrome, where it was associated significantly with both father and mother and in cerebral palsy, where it was associated significantly with fathers.

Our study found that parental depression and anxiety were significantly associated with increasing level of ID, which is in consonance with the results of previous studies.

This study showed that anxiety and depression in the fathers were not significantly associated with the gender of the child; however, anxiety in mother was significantly associated with the girl child. On further analysis of the result, it was found that 100% of the mothers of the female children and adolescents were having either anxiety or depression or both as compared to 91.17% mothers of male child. When studied in fathers, 70% of the fathers of the female children and adolescents were having either anxiety or depression or both as compared to 65.21% fathers of male child. Thus, analysis of data reveals that parents were having more anxiety and depression in case of female child, although it was significant only with respect to anxiety in mother. The possible reason for the same can be the gender bias and vulnerability of female gender in countries of the Indian subcontinent. The incidences of child trafficking and sexual harassment against these differently able children may be considered as additional factors which might have added to the worries of the parents. There has not been much work done on the impact of gender on psychological morbidities in parents, and this is probably the first study to evaluate so.

Our study did not find any significant association between the educational status of the parents with their anxiety and depression scores. It can be reframed that the parents had increased vulnerability to anxiety and depression irrespective to the educational status.

Our study has shown that both anxiety and depression are extremely common in parents of children with ID, and the levels are significant enough requiring intervention. The presence of depression and anxiety in parents has unfavorable impact on the quality of care imparted by parents to their intellectually disabled children and adolescent.[332] Usually, the focus of the treating team is on the child or adolescent rather than parent, who also suffer from unnoticed and unexplored psychiatric morbidities. All such parents should be screened and assessed for any such psychiatric morbidity, so that effective intervention may be instituted in time. Early screening and intervention for anxiety and depression in these parents will help in alleviating the stress of the parents and also outcome of therapeutic intervention designed for the child. We recommended that families of children and adolescents with ID should be treated as a unit with equal emphasis on the psychological stress and morbidity in parents also. It is further recommended that specific support groups targeting these parents be formed at workplace as well in the community so to strengthen the sharing of information and care giving support.

This study found that burden of care for children was shouldered predominantly by mother and evidently had more caregiver's stress and its psychological manifestations. They are able to cope with it if the child is healthy. However, in case the child has a chronic disability like ID this disproportionate burden can lead to significant psychiatric morbidity as we have seen in our study wherein two thirds of mother had depression and more that 90% had anxiety. There is a need to encourage and sensitize fathers to share the burden of caretaking.

The strengths of this study are that this study is the first of its type in industrial workers. Structured, reliable, and widely accepted scale (HADS) was used in this study. This is one of the few studies which considered a large number of variables (age, gender of children, medical and behavioral comorbidities, age, and education status of parents), and their effect on depression and anxiety in parents of children and adolescents with ID.

However, there are some limitations also. First, sample size of the study could have been larger. Second, this is a hospital-based study where the participants had reported for disability certification. Hence, it is prudent to consider the difficulties faced by parents in bringing these children for appointments and assessments, which may have contributed to higher scores at the time of assessment. Third, our population consisted of predominantly government employees, whose marking of responses may have been influenced by its effect on their career, job, and benefits. Fourth, most of our study population was in transferrable job, which has its own disadvantages with prominent ones being – adapting to a new place, loss of acquired social support in the form of neighbourhood and trustworthy friends and inherent stress of the process of shifting. Apart from that not every duty station is congenial for family and children, and they hardly spend quality time together, which further influences the psychological state of the parents.

Further research with a larger sample size and with more rigorous statistical methods may be conducted which may include detailed information of child's disease and disability, behavioral and medical comorbidities, quality, and attributes of social support available.

CONCLUSION

We conclude that significantly high proportion of parents of children and adolescents with ID have anxiety symptoms, depressive symptoms, or both. These symptoms appear to be associated with severity of ID and lack of family support and are more in mothers (primary care givers). We recommend that routine screening for anxiety and depression, of all parents of children with ID should be carried out so that secondary prevention measures can be undertaken resulting in better outcome for both the child and the parents.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.