ORIGINAL ARTICLE
The clinical profile of mentally retarded children in India and prevalence of depression in mothers of the mentally retarded Amit Nagarkar, Jagdish Prashad Sharma, S. K. Tandon, Pritesh Goutam
Department of Psychiatry, R. D. Gardi Medical College, Ujjain, Madhya Pradesh, India
Abstract
Background: Mental retardation (MR) has a varied phenomenology in different parts of the world. While studying MR, psychological issues of caretakers are equally relevant. A study to investigate the phenomenology of MR in Indian children and the prevalence of depression in their mothers was planned in a teaching institute in Madhya Pradesh with an attached tertiary care hospital. Objectives: The objective of the following study is to study the clinical profile of mentally retarded children in the study sample, prevalence of depression in the mothers and investigate various factors affecting it. Study Design: A cross‑sectional study. Materials and Methods: A total of 60 patients diagnosed as MR were included in the study. Objective data was collected in a special proforma and mothers of these individuals were subjected to evaluation with Beck’s Anxiety Inventory and the 17 item Hamilton Rating Scale for Depression. Results: The mean age of patients in the sample was 11.6 years, had received an average of 2.42 years of schooling, mean age at diagnosis of MR was 6.5 years and their mean IQ was 53. Out of the total 60 patients, 88% of the patients had significant co‑morbidities. The prevalence of depression in mothers was 85% and it was more in mothers of, the ones with significant co‑morbidities (OR = 2.67), severer forms of retardation and with higher levels of anxiety in the mother. Conclusions: Prevalence of depression in mothers of mentally retarded children in India seems to be much greater than those reported from studies around the world. Medical services offered to the mentally retarded should move from an individual level to the family level, especially toward the mothers, who are the main caretakers. Counseling services, treatment if required and regular screening of mothers of the mentally retarded should be included in the protocol for management of mental retardation. Key words: Depression, mental retardation, mothers
INTRODUCTION Mental retardation (MR) according to the World Health Organization has overall prevalence of 1‑3% in the global scenario.[1] This by itself suggests the magnitude of the problem in terms of the economy for a developing country like ours. MR also produces psychological, social and financial distress to the whole family, particularly parents, as they are usually the only constant caretakers.[2] Mothers Address for correspondence: Dr. Amit Nagarkar, Department of Psychiatry, R. D. Gardi Medical College, Agar Road, Surasa, Ujjain, Madhya Pradesh, India. E‑mail: [email protected]
How to Goutam in India mentally
cite this article: Nagarkar A, Sharma JP, Tandon SK, P. The clinical profile of mentally retarded children and prevalence of depression in mothers of the retarded. Indian J Psychiatry 2014;56:165-70.
Indian Journal of Psychiatry 56(2), Apr‑Jun 2014
of those children, being the primary caregivers for their children suffer more psychological distress than other members in their families.[3,4] Other family members show comparatively less deleterious effect on psychological health, which may be related to the differing responsibility assigned to child rearing. Literature also reveals that fathers are less involved in caregiving activities when compared with mothers.[5‑8] The psychological health of mothers caring for mentally disabled children is instrumental Access this article online Quick Response Code Website: www.indianjpsychiatry.org
DOI: 10.4103/0019-5545.130500
165
Nagarkar, et al.: Depression in mothers of mentally retarded children
in determining the overall development of the child. Research has revealed that psychiatric morbidities such as depression and anxiety are common among mothers of mentally disabled children. Studies from different countries on parents of children with disabilities suggested that 35‑53% of mothers of children with disabilities have symptoms of depression.[9] The prevalence of depression and anxiety in mothers is said to be affected by several demographic and disease related factors which differ from culture to culture across the world. In the Indian society, it is mostly the mothers of the mentally retarded children who bear the burden and stress of upbringing an underprivileged child. Aims and Objectives • To study the clinical profile of mentally retarded children in the study sample • To find out the prevalence of depression and anxiety in mothers of children with MR • To study the relation between demographic variables and depression in the mothers of the mentally retarded children. MATERIALS AND METHODS Study setting The study was conducted in the Psychiatry outpatient department of Ruxmaniben Deepchand Gardi Medical College, Ujjain, Madhya Pradesh. It is a teaching institute with an attached tertiary care hospital facility. Its catchment areas include the districts of Ujjain, Indore, Bhopal as well as certain districts of the neighboring state of Rajasthan. Patients attending the clinical services are accompanied by their relatives and/or family members. Sample selection Patients of any age, diagnosed as MR according to DSM‑IV‑TR and willing to sign an informed consent for the study were included in the study. Patients having serious medical illnesses and lacking objective data required for the study were excluded. A sample of 60 patients was selected for the study. Mothers of these children were interviewed for complete objective data. An informed written consent for the study was taken from all mothers of the patients before inclusion into the study. Beck’s Anxiety Inventory (BAI) and Hamilton Depression Rating Scale (HAM‑D 17) were used to document psychopathology in mothers of the mentally retarded subjects. Totally 60 patients included into the study were subjected to IQ measurements done by the clinical psychologist. Objective data regarding the demographic details and clinical profile of illness was collected from the mothers in a specialized case record form prepared for the study. Mothers were then administered Beck’s Depression 166
Inventory and Hamilton Depression Rating Scale (HAM‑D 17). The scores were documented in the case record forms. The data collected was pooled, tabulated and subjected to statistical analysis. Chi‑square tests were used wherever appropriate. RESULTS Socio‑demographic variables of the study population The mean age of the study population was around 11.6 years (standard deviation [SD] ±5.11). Most of the patients in the study belonged to the age group of 5‑15 years (approximately 77%). Every patient in the study received an average of 2.42 years of schooling (SD ± 2.94). Thereafter the schooling was reportedly stopped. The mean age at which patients were diagnosed as having MR was around 6.5 years (SD ± 4.48). Every patient had an average 1.83 number of siblings with 0.033 affected with MR. The mean order of birth of the mentally retarded patients in the study was 1.9 (SD ± 0.89). The mean IQ of the patients was around 53 (SD ± 9.34). The average total family income of the patients was around Rs. 6000. All the patients in the study were unmarried. The study sample included 60 mentally retarded patients, of which 40 were males (66.7%) and 20 were females (33.3%). Age at the diagnosis of MR Most of the patients (up to 80%) were diagnosed as having MR by the age of 10 years. Nearly 55% patients were diagnosed by the age of 5 years, 25% between the age of 5‑10 years and 5% between the age of 10‑15 years. Surprisingly a small number of patients, 3 out of 60, were first diagnosed as mentally retarded after the age of 15 years. Education of parents Parents of the patients in the study sample had received an average of 6‑8 years of schooling. Religion Among the 60 patients, 71.7% (43) were Hindus while 28.3% (17) patients were Muslims. The finding only reflects the population make up in the area of the study where Hindus are a majority in the population. Socioe‑conomic status Most of the families, 67%, belonged to the poorer section with total family income less than Rs. 5000/month. Around 30% of the families had a reasonably good income in the range of 5000‑15000/month. IQ of the study population The mean IQ as measured on Bhatia’s battery was around 53.33. Severity of retardation in patients was assessed using grades of intelligence. More than half, i.e. 58% of the patients had mild MR, while 30% had moderate MR. Indian Journal of Psychiatry 56(2), Apr‑Jun 2014
Nagarkar, et al.: Depression in mothers of mentally retarded children
Severe retardation was evident in around 12% of the patients. Grade of intelligence Mild Moderate Severe
Number of patients
Percentage of total=60
35 18 7
58 30 12
common accompaniment with MR in more than half of the study population. Following were the different co‑morbidities recorded in the study population.
Siblings of the patient 66.7% of the patients had 1 or 2 siblings. 23.3% had 3 siblings while 12% had 4 siblings. Only 8.3% patients were the only child in the family with no siblings. Siblings affected with MR Only 2 patients out of the 60 (i.e. a meager 3.3%) had affected siblings (with MR) in their family. This may point that MR may not run among siblings.
Associated co‑morbidity
Frequency
Percentage of total=60
Epilepsy Behavioral problems ADHD Autism Nocturnal enuresis Psychosis Sensory (hearing/vision) impairment
9 8 7 2 2 2 2
15 13.3 11.66 3.33 3.33 3.33 3.33
*Patients had more than one co‑morbidities too. ADHD – Attention deficit hyperactivity disorder
Certain syndromes and medical/surgical conditions, of which MR is a part, were also seen to be prevalent in the study population. The frequency of these syndromes in as given below.
Order of birth of the patient MR seemed to be prevalent more in the 1st and the 2nd order of birth rather than the consecutive ones. Patients in the study mostly were of the 1st and 2nd order birth in their respective families (80%; 48 out of 60). Only 10 patients were of higher order.
Syndromes and medical conditions Frequency Percentage of total=60 diagnosed in the study population Cerebral palsy Downs syndrome Laurence moon biedl bardet syndrome Microcephaly
History of delay in speech and milestones (development) Delay in speech development was the most universal finding seen in 96.7% patients. 86.7% patients had a delay in achieving sensory milestones and 76.7% patients reported delay in achieving motor milestones [Figure 1].
27 5 2
45 8.33 3.33
2
3.33
Family history Family history of MR was present in 5 patients (8.4%) and absent in 55 patients (91.6%). Family history of mental illnesses other than MR was evident in 2 patients (3.3%).
Psychological impact on mothers of mentally retarded children BAI score in the mothers of the patients The mean BAI score was around 19, which depicts significant levels of anxiety in the mother of mentally retarded children. Mothers of all the patients showed features of anxiety, as recorded on the BAI. Severity of the anxiety was assessed according to BAI ratings [Figure 2].
Co‑morbidities in the patients Co‑morbidities were reported in 53.33% (32 out of 60) patients while 46.7% patients (28 out of 60) did not have any co‑morbidities. Co‑morbidities thus seem to be very
Hamilton depression rating scores (HAM‑D 17) in the mother The mean score in the mothers was around 18. Depression was found to be present in 85% patients (51 out of 60 patients). 9 patients did not report symptoms amounting
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Figure 1: Number of children with delay in milestones, among the total 60 patients Indian Journal of Psychiatry 56(2), Apr‑Jun 2014
167
Nagarkar, et al.: Depression in mothers of mentally retarded children
to depression. Severity of depression in the mothers was assessed using grades of depression according to their HAM‑D 17 scores as illustrated in Figure 3. Relation between the socio‑demographic variables of patients and depression in the mothers Gender of patients Prevalence of depression in mothers was seen to be more in female patients (90%) as compared to the male mentally retarded patients (82.5%). However, whether the gender of the retarded child poses a significant risk toward the development of stress and depression in their mothers cannot be conclusively commented upon (odds ratio [OR] =0.524). Depression in mothers Present Absent Total
Gender (%)
Total (%)
Male
Female
33 (82.5) 7 (17.5) 40 (100)
18 (90) 2 (10) 20 (100)
51 (85) 9 (15) 60 (100)
χ2-test=0.588, df=1, P=0.443 (not significant)
Religion Depression was comparatively more evident in the mothers of Hindu patients (88.4%) as compared to the Muslim patients (76.5%). This may be a representation of the general population, as Hindu patients are in the majority. The findings were not clinically significant. Depression in mothers Present Absent Total
Religion (%) Hindu
Muslim
38 (88.4) 5 (11.6) 43 (100)
13 (76.5) 4 (23.5) 17 (100)
Total (%) 51 (85) 9 (15) 60 (100)
χ -test=1.354 df=1, P=0.245 (not significant)
retardation had depression in their mothers while the prevalence of depression was comparatively lower, 94.4% in mothers of patients with moderate retardation; and was least 77% in those with mild retardation. Severity of depression may thus serve as a predicting factor for depression in mothers or caretakers of the mentally retarded. The findings however did not reach clinical significance as the data was comparatively small. Depression in mothers Present Absent Total
Grades of mental retardation (%) Mild
Moderate
Severe
27 (77.1) 8 (22.9) 35 (100)
17 (94.4) 1 (5.6) 18 (100)
7 (100) 0 (0) 7 (100)
Total (%) 51 (85) 9 (15) 60 (100)
χ2-test=4.189, df=1, P=0.123 (not significant)
Delay in milestones and speech development No significant difference was observed in the effect of delay in milestones or delay in speech in causing depression in the mothers. The prevalence of depression in mothers remained around 84‑87% in all the three categories as shown in tables below. Motor milestones Depression in mothers Present Absent Total
Delay in motor milestones (%)
Total (%)
Present
Absent
40 (87) 6 (13) 46 (100)
11 (78.6) 3 (21.4) 14 (100)
51 (85) 9 (15) 60 (100)
χ2-test=0.592, df=1, P=0.442 (not significant)
Sensory milestones
2
Severity of MR Depression was seen to be omnipresent in the mothers of patients having severe MR. 100% of patients with severe
Depression in mothers Present Absent Total
Delay in sensory milestones (%) Present
Absent
‑ 8 (15.4) 52 (100)
7 (87.5) 1 (12.5) 8 (100)
Total (%)
51 (85) 9 (15) 60 (100)
χ2-test=0.045, df=1, P=0.832 (not significant)
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Figure 3: Grades of depression according hamilton rating scale for depression scores Indian Journal of Psychiatry 56(2), Apr‑Jun 2014
Nagarkar, et al.: Depression in mothers of mentally retarded children
Delay in speech development Depression in mothers
Delay in speech development (%)
Present Absent Total
Present
Absent
50 (86.2) 8 (13.8) 58 (100)
1 (50) 1 (50) 2 (100)
Total (%)
51 (85) 9 (15) 60 (100)
χ2-test=1.988, df=1, P=0.159 (not significant)
Presence of co‑morbidities in patient The prevalence of depression in mothers was more, around 87%, in those patients with significant co‑morbidities as compared to those who did not have co‑morbidities, i.e.,71%. Presence of co‑morbidities thus poses a risk for development of depression in mothers of the mentally retarded (OR = 2.628). Depression in mothers
Co‑morbidities in patient (%)
Present Absent Total
Present
Absent
46 (86.8) 7 (13.2) 53 (100)
5 (71.4) 2 (28.6) 7 (100)
Total (%)
51 (85) 9 (15) 60 (100)
χ2-test=1.145, df=1, P=0.285 (not significant)
Severity of anxiety All the mothers who reported severe anxiety also had concomitant depression. 90% of those who had moderate levels of anxiety showed depression. Prevalence of depression was comparatively lower 71.4% and 73.7% in mothers having minimal and mild levels of anxiety respectively. Depression in mother Present Absent Total
Grades of anxiety according to BAI scores (%) Minimal
Mild
Moderate
Severe
5 (71.4) 2 (28.6) 7 (100)
14 (73.7) 5 (26.3) 19 (100)
18 (90) 2 (10) 20 (100)
14 (100) 0 (0) 14 (100)
Total (%)
51 (85) 9 (15) 60 (100)
χ2-test=5.872 df=1 P=0.123 (not significant). BAI – Beck’s anxiety inventory
CONCLUSIONS AND DISCUSSION MR predominates in males in India. Special schooling for the mentally retarded needs to be encouraged as most of them remain deprived of schooling. Nearly 88% of the patients also have significant co‑morbidities which need to be addressed separately. The diagnosis of MR is delayed above the mean age of 6.5 years in a significant number of patients, reasons for which remain a matter of investigation. In our study sample, 85% of the mothers of the mentally retarded suffer from depression. The prevalence seems to be much greater than the ones reported by Emerson et al., (35%)[9] and even in a similar Swedish study.[10] So also the prevalence of psychiatric co‑morbidities was reportedly lower in the Turkish,[11] Asian British,[12] Swedish,[13] British[9] Indian Journal of Psychiatry 56(2), Apr‑Jun 2014
and the Qatar studies.[14] The difference between the other studies should be expected due to different types of psychometric tools used,[15] difference in the age of children, setting of the study, geographical variation that implies difference in culture, economic status and health care service. However, the wide disparity in an Indian setup is a matter of concern and needs to be dealt with. The determination of predictors of depression among mothers caring for mentally disabled children may to help health professionals in identifying those mothers who need special attention to reduce their risk of psychological distress and restore their psychological well‑being. The mothers experience distress due to irreversibility of the intellectual disability, social stigma, anticipation of future and caring demand.[16] Depression was more prevalent among mothers of female patients in our study. The prevalence of psychological stress was found to be more in mothers of female mentally retarded children. The fact is reiterated by the supposition that female mentally retarded patients are considered a social burden in the Indian scenario and depression in the mother caretakers is therefore understandable. However, whether the gender of the retarded child poses a significant risk toward the development of stress and depression in their mothers cannot be conclusively commented upon (OR = 0.524). So also more severe the retardation more is the prevalence of depression in mothers. The prevalence of depression increases with the levels and severity of anxiety in the caretaker. Significant physical or mental co‑morbidities in the retarded individuals also pose a risk of developing depression in their mothers (OR = 2.67), similar to the findings of the Qatar study.[14] This is in agreement with the British study,[9] the OR being higher (2.67 compared to 1.6). This association was reported by many studies[17‑19] which can be attributed to the degree of child dependency on the mother in daily activities of life, for example, toileting, bathing, feeding, clothing and mobility, which increase the burden of caring. Caring for children with multiple disabilities increases the maternal caregiving hours.[20] Co‑morbidities such as epilepsy, cerebral palsy and psychosis make the children dependent on their caretakers for life. The presence of any chronic illness in the mentally disabled child is found to be one of the predictors for psychiatric morbidity in the mother.[19,21] Adequate measures to address these issues might relieve the mothers of some stress they have to deal with. Providing adequate information on child disability and the availability of services along with caring skills training of dealing with a disabled child has a great impact on reducing the psychological distress among mothers of disabled children.[22‑25] In a study by Taanila et al.,[26] parents, who received information and advice in caring for their disabled children, reported positive feelings toward caring for their children. Such an intervention helps mothers to cope faster through the caring skills taught to them. 169
Nagarkar, et al.: Depression in mothers of mentally retarded children
The rehabilitation institutes should shift their services from child‑centered to family‑centered services by increasing awareness of health maintenance organizations and rehabilitation centers on the importance of involving families in their services through providing psychological assessment for mothers and offering family psychological support service units within the institute. All these services should preferably start from the birth of the mentally disabled child to help the parents in coping and should be extensively provided for mothers who are at more risk to develop psychiatric morbidity, such as mothers of children with multiple disabilities. Medical services offered to the mentally retarded should therefore now move from an individual level to the family level, especially toward the mothers, who are the main caretakers. Counseling services, treatment if required and regular screening of mothers of the mentally retarded should be included in the protocol for management of MR. REFERENCES 1.
World Health Organization. Mental Health Around the World, World Health Day 2001. Geneva: WHO; 2001. 2. Schwartz C, Tsumi A. Parental involvement in the residential care of persons with intellectual disability: The impact of parents’ and residents’ characteristics and the process of relocation. J Appl Intellect Disabil 2003;16:285‑93. 3. Weiss JA, Sullivan A, Diamond T. Parent stress adaptive functioning of individuals with developmental disabilities. J Dev Disabil 2003;10:129‑35. 4. Pelchat D, Lefebvre H, Perreault M. Differences and similarities between mothers’ and fathers’ experiences of parenting a child with a disability. J Child Health Care 2003;7:231‑47. 5. Romans‑Clarkson SE, Clarkson JE, Dittmer ID, Flett R, Linsell C, Mullen PE, et al. Impact of a handicapped child on mental health of parents. Br Med J (Clin Res Ed) 1986;293:1395‑7. 6. Moes D, Koegel RL, Schreibman L, Loos LM. Stress profiles for mothers and fathers of children with autism. Psychol Rep 1992;71:1272‑4. 7. Cuskelly M, Pullan L, Hayes A. Parenting and employment decision of parents with a preschool child with disability. J Intellect Dev Disabil 1998;23:319‑32. 8. Hastings RP. Child behaviour problems and partner mental health as correlates of stress in mothers and fathers of children with autism. J Intellect Disabil Res 2003;47:231‑7. 9. Emerson E. Mothers of children and adolescents with intellectual disability: Social and economic situation, mental health status, and the
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self‑assessed social and psychological impact of the child’s difficulties. J Intellect Disabil Res 2003;47:385‑99. Olsson MB, Hwang CP. Depression in mothers and fathers of children with intellectual disability. J Intellect Disabil Res 2001;45:535‑43. Firat S, Diler RS, Avci A, Seydaoglu G. Comparison of psychopathology in the mothers of autistic and mentally retarded children. J Korean Med Sci 2002;17:679‑85. Emerson E, Robertson J, Wood J. Levels of psychological distress experienced by family carers of children and adolescent with intellectual disabilities in an urban conurbation. J Appl Intellect Disabil 2004;17:77‑84. Olsson MB, Hwang CP. Sense of coherence in parents of children with different developmental disabilities. J Intellect Disabil Res 2002;46:548‑59. Al‑Kuwari MG. Psychological health of mothers caring for mentally disabled children in Qatar. Neurosciences (Riyadh) 2007;12:312‑7. Daradkeh TK, Ghubash R, el‑Rufaie OE. Reliability, validity, and factor structure of the Arabic version of the 12‑item General Health Questionnaire. Psychol Rep 2001;89:85‑94. Pelchat D, Ricard N, Bouchard JM, Perreault M, Saucier JF, Berthiaume M, et al. Adaptation of parents in relation to their 6‑month‑old infant’s type of disability. Child Care Health Dev 1999;25:377‑97. Manuel J, Naughton MJ, Balkrishnan R, Paterson Smith B, Koman LA. Stress and adaptation in mothers of children with cerebral palsy. J Pediatr Psychol 2003;28:197‑201. Sloper P, Turner S. Risk and resistance factors in the adaptation of parents of children with severe physical disability. J Child Psychol Psychiatry 1993;34:167‑88. Silver EJ, Westbrook LE, Stein RE. Relationship of parental psychological distress to consequences of chronic health conditions in children. J Pediatr Psychol 1998;23:5‑15. Bouma R, Schweitzer R. The impact of chronic childhood illness on family stress: A comparison between autism and cystic fibrosis. J Clin Psychol 1990;46:722‑30. Brust JD, Leonard BJ, Sielaff BH. Maternal time and the care of disabled children. Public Health Nurs 1992;9:177‑84. Law M, Hanna S, King G, Hurley P, King S, Kertoy M, et al. Factors affecting family‑centred service delivery for children with disabilities. Child Care Health Dev 2003;29:357‑66. Redmond B, Richardson V. Just getting on with it: Exploring the service needs of mothers who care for young children with severe/profound and life‑threatening intellectual disability. J Appl Res Intellect Disabil 2003;16:205‑18. Kelly B, Monteith M. Supporting disabled children and their families in Northern Ireland: A research and policy review. London (UK): National Children’s Bureau and Joseph Rowntree Foundation; 2003. Taanila A, Syrjälä L, Kokkonen J, Järvelin MR. Coping of parents with physically and/or intellectually disabled children. Child Care Health Dev 2002;28:73‑86. Taanila A, Järvelin MR, Kokkonen J. Parental guidance and counselling by doctors and nursing staff: Parents’ views of initial information and advice for families with disabled children. J Clin Nurs 1998;7:505‑11.
Source of Support: Nil, Conflict of Interest: None declared
Indian Journal of Psychiatry 56(2), Apr‑Jun 2014
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The clinical profile of mentally retarded children in India and prevalence of depression in mothers of the mentally retarded Amit Nagarkar, Jagdish Prashad Sharma, S. K. Tandon, Pritesh Goutam
Department of Psychiatry, R. D. Gardi Medical College, Ujjain, Madhya Pradesh, India
Abstract
Background: Mental retardation (MR) has a varied phenomenology in different parts of the world. While studying MR, psychological issues of caretakers are equally relevant. A study to investigate the phenomenology of MR in Indian children and the prevalence of depression in their mothers was planned in a teaching institute in Madhya Pradesh with an attached tertiary care hospital. Objectives: The objective of the following study is to study the clinical profile of mentally retarded children in the study sample, prevalence of depression in the mothers and investigate various factors affecting it. Study Design: A cross‑sectional study. Materials and Methods: A total of 60 patients diagnosed as MR were included in the study. Objective data was collected in a special proforma and mothers of these individuals were subjected to evaluation with Beck’s Anxiety Inventory and the 17 item Hamilton Rating Scale for Depression. Results: The mean age of patients in the sample was 11.6 years, had received an average of 2.42 years of schooling, mean age at diagnosis of MR was 6.5 years and their mean IQ was 53. Out of the total 60 patients, 88% of the patients had significant co‑morbidities. The prevalence of depression in mothers was 85% and it was more in mothers of, the ones with significant co‑morbidities (OR = 2.67), severer forms of retardation and with higher levels of anxiety in the mother. Conclusions: Prevalence of depression in mothers of mentally retarded children in India seems to be much greater than those reported from studies around the world. Medical services offered to the mentally retarded should move from an individual level to the family level, especially toward the mothers, who are the main caretakers. Counseling services, treatment if required and regular screening of mothers of the mentally retarded should be included in the protocol for management of mental retardation. Key words: Depression, mental retardation, mothers
INTRODUCTION Mental retardation (MR) according to the World Health Organization has overall prevalence of 1‑3% in the global scenario.[1] This by itself suggests the magnitude of the problem in terms of the economy for a developing country like ours. MR also produces psychological, social and financial distress to the whole family, particularly parents, as they are usually the only constant caretakers.[2] Mothers Address for correspondence: Dr. Amit Nagarkar, Department of Psychiatry, R. D. Gardi Medical College, Agar Road, Surasa, Ujjain, Madhya Pradesh, India. E‑mail: [email protected]
How to Goutam in India mentally
cite this article: Nagarkar A, Sharma JP, Tandon SK, P. The clinical profile of mentally retarded children and prevalence of depression in mothers of the retarded. Indian J Psychiatry 2014;56:165-70.
Indian Journal of Psychiatry 56(2), Apr‑Jun 2014
of those children, being the primary caregivers for their children suffer more psychological distress than other members in their families.[3,4] Other family members show comparatively less deleterious effect on psychological health, which may be related to the differing responsibility assigned to child rearing. Literature also reveals that fathers are less involved in caregiving activities when compared with mothers.[5‑8] The psychological health of mothers caring for mentally disabled children is instrumental Access this article online Quick Response Code Website: www.indianjpsychiatry.org
DOI: 10.4103/0019-5545.130500
165
Nagarkar, et al.: Depression in mothers of mentally retarded children
in determining the overall development of the child. Research has revealed that psychiatric morbidities such as depression and anxiety are common among mothers of mentally disabled children. Studies from different countries on parents of children with disabilities suggested that 35‑53% of mothers of children with disabilities have symptoms of depression.[9] The prevalence of depression and anxiety in mothers is said to be affected by several demographic and disease related factors which differ from culture to culture across the world. In the Indian society, it is mostly the mothers of the mentally retarded children who bear the burden and stress of upbringing an underprivileged child. Aims and Objectives • To study the clinical profile of mentally retarded children in the study sample • To find out the prevalence of depression and anxiety in mothers of children with MR • To study the relation between demographic variables and depression in the mothers of the mentally retarded children. MATERIALS AND METHODS Study setting The study was conducted in the Psychiatry outpatient department of Ruxmaniben Deepchand Gardi Medical College, Ujjain, Madhya Pradesh. It is a teaching institute with an attached tertiary care hospital facility. Its catchment areas include the districts of Ujjain, Indore, Bhopal as well as certain districts of the neighboring state of Rajasthan. Patients attending the clinical services are accompanied by their relatives and/or family members. Sample selection Patients of any age, diagnosed as MR according to DSM‑IV‑TR and willing to sign an informed consent for the study were included in the study. Patients having serious medical illnesses and lacking objective data required for the study were excluded. A sample of 60 patients was selected for the study. Mothers of these children were interviewed for complete objective data. An informed written consent for the study was taken from all mothers of the patients before inclusion into the study. Beck’s Anxiety Inventory (BAI) and Hamilton Depression Rating Scale (HAM‑D 17) were used to document psychopathology in mothers of the mentally retarded subjects. Totally 60 patients included into the study were subjected to IQ measurements done by the clinical psychologist. Objective data regarding the demographic details and clinical profile of illness was collected from the mothers in a specialized case record form prepared for the study. Mothers were then administered Beck’s Depression 166
Inventory and Hamilton Depression Rating Scale (HAM‑D 17). The scores were documented in the case record forms. The data collected was pooled, tabulated and subjected to statistical analysis. Chi‑square tests were used wherever appropriate. RESULTS Socio‑demographic variables of the study population The mean age of the study population was around 11.6 years (standard deviation [SD] ±5.11). Most of the patients in the study belonged to the age group of 5‑15 years (approximately 77%). Every patient in the study received an average of 2.42 years of schooling (SD ± 2.94). Thereafter the schooling was reportedly stopped. The mean age at which patients were diagnosed as having MR was around 6.5 years (SD ± 4.48). Every patient had an average 1.83 number of siblings with 0.033 affected with MR. The mean order of birth of the mentally retarded patients in the study was 1.9 (SD ± 0.89). The mean IQ of the patients was around 53 (SD ± 9.34). The average total family income of the patients was around Rs. 6000. All the patients in the study were unmarried. The study sample included 60 mentally retarded patients, of which 40 were males (66.7%) and 20 were females (33.3%). Age at the diagnosis of MR Most of the patients (up to 80%) were diagnosed as having MR by the age of 10 years. Nearly 55% patients were diagnosed by the age of 5 years, 25% between the age of 5‑10 years and 5% between the age of 10‑15 years. Surprisingly a small number of patients, 3 out of 60, were first diagnosed as mentally retarded after the age of 15 years. Education of parents Parents of the patients in the study sample had received an average of 6‑8 years of schooling. Religion Among the 60 patients, 71.7% (43) were Hindus while 28.3% (17) patients were Muslims. The finding only reflects the population make up in the area of the study where Hindus are a majority in the population. Socioe‑conomic status Most of the families, 67%, belonged to the poorer section with total family income less than Rs. 5000/month. Around 30% of the families had a reasonably good income in the range of 5000‑15000/month. IQ of the study population The mean IQ as measured on Bhatia’s battery was around 53.33. Severity of retardation in patients was assessed using grades of intelligence. More than half, i.e. 58% of the patients had mild MR, while 30% had moderate MR. Indian Journal of Psychiatry 56(2), Apr‑Jun 2014
Nagarkar, et al.: Depression in mothers of mentally retarded children
Severe retardation was evident in around 12% of the patients. Grade of intelligence Mild Moderate Severe
Number of patients
Percentage of total=60
35 18 7
58 30 12
common accompaniment with MR in more than half of the study population. Following were the different co‑morbidities recorded in the study population.
Siblings of the patient 66.7% of the patients had 1 or 2 siblings. 23.3% had 3 siblings while 12% had 4 siblings. Only 8.3% patients were the only child in the family with no siblings. Siblings affected with MR Only 2 patients out of the 60 (i.e. a meager 3.3%) had affected siblings (with MR) in their family. This may point that MR may not run among siblings.
Associated co‑morbidity
Frequency
Percentage of total=60
Epilepsy Behavioral problems ADHD Autism Nocturnal enuresis Psychosis Sensory (hearing/vision) impairment
9 8 7 2 2 2 2
15 13.3 11.66 3.33 3.33 3.33 3.33
*Patients had more than one co‑morbidities too. ADHD – Attention deficit hyperactivity disorder
Certain syndromes and medical/surgical conditions, of which MR is a part, were also seen to be prevalent in the study population. The frequency of these syndromes in as given below.
Order of birth of the patient MR seemed to be prevalent more in the 1st and the 2nd order of birth rather than the consecutive ones. Patients in the study mostly were of the 1st and 2nd order birth in their respective families (80%; 48 out of 60). Only 10 patients were of higher order.
Syndromes and medical conditions Frequency Percentage of total=60 diagnosed in the study population Cerebral palsy Downs syndrome Laurence moon biedl bardet syndrome Microcephaly
History of delay in speech and milestones (development) Delay in speech development was the most universal finding seen in 96.7% patients. 86.7% patients had a delay in achieving sensory milestones and 76.7% patients reported delay in achieving motor milestones [Figure 1].
27 5 2
45 8.33 3.33
2
3.33
Family history Family history of MR was present in 5 patients (8.4%) and absent in 55 patients (91.6%). Family history of mental illnesses other than MR was evident in 2 patients (3.3%).
Psychological impact on mothers of mentally retarded children BAI score in the mothers of the patients The mean BAI score was around 19, which depicts significant levels of anxiety in the mother of mentally retarded children. Mothers of all the patients showed features of anxiety, as recorded on the BAI. Severity of the anxiety was assessed according to BAI ratings [Figure 2].
Co‑morbidities in the patients Co‑morbidities were reported in 53.33% (32 out of 60) patients while 46.7% patients (28 out of 60) did not have any co‑morbidities. Co‑morbidities thus seem to be very
Hamilton depression rating scores (HAM‑D 17) in the mother The mean score in the mothers was around 18. Depression was found to be present in 85% patients (51 out of 60 patients). 9 patients did not report symptoms amounting
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Figure 1: Number of children with delay in milestones, among the total 60 patients Indian Journal of Psychiatry 56(2), Apr‑Jun 2014
167
Nagarkar, et al.: Depression in mothers of mentally retarded children
to depression. Severity of depression in the mothers was assessed using grades of depression according to their HAM‑D 17 scores as illustrated in Figure 3. Relation between the socio‑demographic variables of patients and depression in the mothers Gender of patients Prevalence of depression in mothers was seen to be more in female patients (90%) as compared to the male mentally retarded patients (82.5%). However, whether the gender of the retarded child poses a significant risk toward the development of stress and depression in their mothers cannot be conclusively commented upon (odds ratio [OR] =0.524). Depression in mothers Present Absent Total
Gender (%)
Total (%)
Male
Female
33 (82.5) 7 (17.5) 40 (100)
18 (90) 2 (10) 20 (100)
51 (85) 9 (15) 60 (100)
χ2-test=0.588, df=1, P=0.443 (not significant)
Religion Depression was comparatively more evident in the mothers of Hindu patients (88.4%) as compared to the Muslim patients (76.5%). This may be a representation of the general population, as Hindu patients are in the majority. The findings were not clinically significant. Depression in mothers Present Absent Total
Religion (%) Hindu
Muslim
38 (88.4) 5 (11.6) 43 (100)
13 (76.5) 4 (23.5) 17 (100)
Total (%) 51 (85) 9 (15) 60 (100)
χ -test=1.354 df=1, P=0.245 (not significant)
retardation had depression in their mothers while the prevalence of depression was comparatively lower, 94.4% in mothers of patients with moderate retardation; and was least 77% in those with mild retardation. Severity of depression may thus serve as a predicting factor for depression in mothers or caretakers of the mentally retarded. The findings however did not reach clinical significance as the data was comparatively small. Depression in mothers Present Absent Total
Grades of mental retardation (%) Mild
Moderate
Severe
27 (77.1) 8 (22.9) 35 (100)
17 (94.4) 1 (5.6) 18 (100)
7 (100) 0 (0) 7 (100)
Total (%) 51 (85) 9 (15) 60 (100)
χ2-test=4.189, df=1, P=0.123 (not significant)
Delay in milestones and speech development No significant difference was observed in the effect of delay in milestones or delay in speech in causing depression in the mothers. The prevalence of depression in mothers remained around 84‑87% in all the three categories as shown in tables below. Motor milestones Depression in mothers Present Absent Total
Delay in motor milestones (%)
Total (%)
Present
Absent
40 (87) 6 (13) 46 (100)
11 (78.6) 3 (21.4) 14 (100)
51 (85) 9 (15) 60 (100)
χ2-test=0.592, df=1, P=0.442 (not significant)
Sensory milestones
2
Severity of MR Depression was seen to be omnipresent in the mothers of patients having severe MR. 100% of patients with severe
Depression in mothers Present Absent Total
Delay in sensory milestones (%) Present
Absent
‑ 8 (15.4) 52 (100)
7 (87.5) 1 (12.5) 8 (100)
Total (%)
51 (85) 9 (15) 60 (100)
χ2-test=0.045, df=1, P=0.832 (not significant)
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Figure 3: Grades of depression according hamilton rating scale for depression scores Indian Journal of Psychiatry 56(2), Apr‑Jun 2014
Nagarkar, et al.: Depression in mothers of mentally retarded children
Delay in speech development Depression in mothers
Delay in speech development (%)
Present Absent Total
Present
Absent
50 (86.2) 8 (13.8) 58 (100)
1 (50) 1 (50) 2 (100)
Total (%)
51 (85) 9 (15) 60 (100)
χ2-test=1.988, df=1, P=0.159 (not significant)
Presence of co‑morbidities in patient The prevalence of depression in mothers was more, around 87%, in those patients with significant co‑morbidities as compared to those who did not have co‑morbidities, i.e.,71%. Presence of co‑morbidities thus poses a risk for development of depression in mothers of the mentally retarded (OR = 2.628). Depression in mothers
Co‑morbidities in patient (%)
Present Absent Total
Present
Absent
46 (86.8) 7 (13.2) 53 (100)
5 (71.4) 2 (28.6) 7 (100)
Total (%)
51 (85) 9 (15) 60 (100)
χ2-test=1.145, df=1, P=0.285 (not significant)
Severity of anxiety All the mothers who reported severe anxiety also had concomitant depression. 90% of those who had moderate levels of anxiety showed depression. Prevalence of depression was comparatively lower 71.4% and 73.7% in mothers having minimal and mild levels of anxiety respectively. Depression in mother Present Absent Total
Grades of anxiety according to BAI scores (%) Minimal
Mild
Moderate
Severe
5 (71.4) 2 (28.6) 7 (100)
14 (73.7) 5 (26.3) 19 (100)
18 (90) 2 (10) 20 (100)
14 (100) 0 (0) 14 (100)
Total (%)
51 (85) 9 (15) 60 (100)
χ2-test=5.872 df=1 P=0.123 (not significant). BAI – Beck’s anxiety inventory
CONCLUSIONS AND DISCUSSION MR predominates in males in India. Special schooling for the mentally retarded needs to be encouraged as most of them remain deprived of schooling. Nearly 88% of the patients also have significant co‑morbidities which need to be addressed separately. The diagnosis of MR is delayed above the mean age of 6.5 years in a significant number of patients, reasons for which remain a matter of investigation. In our study sample, 85% of the mothers of the mentally retarded suffer from depression. The prevalence seems to be much greater than the ones reported by Emerson et al., (35%)[9] and even in a similar Swedish study.[10] So also the prevalence of psychiatric co‑morbidities was reportedly lower in the Turkish,[11] Asian British,[12] Swedish,[13] British[9] Indian Journal of Psychiatry 56(2), Apr‑Jun 2014
and the Qatar studies.[14] The difference between the other studies should be expected due to different types of psychometric tools used,[15] difference in the age of children, setting of the study, geographical variation that implies difference in culture, economic status and health care service. However, the wide disparity in an Indian setup is a matter of concern and needs to be dealt with. The determination of predictors of depression among mothers caring for mentally disabled children may to help health professionals in identifying those mothers who need special attention to reduce their risk of psychological distress and restore their psychological well‑being. The mothers experience distress due to irreversibility of the intellectual disability, social stigma, anticipation of future and caring demand.[16] Depression was more prevalent among mothers of female patients in our study. The prevalence of psychological stress was found to be more in mothers of female mentally retarded children. The fact is reiterated by the supposition that female mentally retarded patients are considered a social burden in the Indian scenario and depression in the mother caretakers is therefore understandable. However, whether the gender of the retarded child poses a significant risk toward the development of stress and depression in their mothers cannot be conclusively commented upon (OR = 0.524). So also more severe the retardation more is the prevalence of depression in mothers. The prevalence of depression increases with the levels and severity of anxiety in the caretaker. Significant physical or mental co‑morbidities in the retarded individuals also pose a risk of developing depression in their mothers (OR = 2.67), similar to the findings of the Qatar study.[14] This is in agreement with the British study,[9] the OR being higher (2.67 compared to 1.6). This association was reported by many studies[17‑19] which can be attributed to the degree of child dependency on the mother in daily activities of life, for example, toileting, bathing, feeding, clothing and mobility, which increase the burden of caring. Caring for children with multiple disabilities increases the maternal caregiving hours.[20] Co‑morbidities such as epilepsy, cerebral palsy and psychosis make the children dependent on their caretakers for life. The presence of any chronic illness in the mentally disabled child is found to be one of the predictors for psychiatric morbidity in the mother.[19,21] Adequate measures to address these issues might relieve the mothers of some stress they have to deal with. Providing adequate information on child disability and the availability of services along with caring skills training of dealing with a disabled child has a great impact on reducing the psychological distress among mothers of disabled children.[22‑25] In a study by Taanila et al.,[26] parents, who received information and advice in caring for their disabled children, reported positive feelings toward caring for their children. Such an intervention helps mothers to cope faster through the caring skills taught to them. 169
Nagarkar, et al.: Depression in mothers of mentally retarded children
The rehabilitation institutes should shift their services from child‑centered to family‑centered services by increasing awareness of health maintenance organizations and rehabilitation centers on the importance of involving families in their services through providing psychological assessment for mothers and offering family psychological support service units within the institute. All these services should preferably start from the birth of the mentally disabled child to help the parents in coping and should be extensively provided for mothers who are at more risk to develop psychiatric morbidity, such as mothers of children with multiple disabilities. Medical services offered to the mentally retarded should therefore now move from an individual level to the family level, especially toward the mothers, who are the main caretakers. Counseling services, treatment if required and regular screening of mothers of the mentally retarded should be included in the protocol for management of MR. REFERENCES 1.
World Health Organization. Mental Health Around the World, World Health Day 2001. Geneva: WHO; 2001. 2. Schwartz C, Tsumi A. Parental involvement in the residential care of persons with intellectual disability: The impact of parents’ and residents’ characteristics and the process of relocation. J Appl Intellect Disabil 2003;16:285‑93. 3. Weiss JA, Sullivan A, Diamond T. Parent stress adaptive functioning of individuals with developmental disabilities. J Dev Disabil 2003;10:129‑35. 4. Pelchat D, Lefebvre H, Perreault M. Differences and similarities between mothers’ and fathers’ experiences of parenting a child with a disability. J Child Health Care 2003;7:231‑47. 5. Romans‑Clarkson SE, Clarkson JE, Dittmer ID, Flett R, Linsell C, Mullen PE, et al. Impact of a handicapped child on mental health of parents. Br Med J (Clin Res Ed) 1986;293:1395‑7. 6. Moes D, Koegel RL, Schreibman L, Loos LM. Stress profiles for mothers and fathers of children with autism. Psychol Rep 1992;71:1272‑4. 7. Cuskelly M, Pullan L, Hayes A. Parenting and employment decision of parents with a preschool child with disability. J Intellect Dev Disabil 1998;23:319‑32. 8. Hastings RP. Child behaviour problems and partner mental health as correlates of stress in mothers and fathers of children with autism. J Intellect Disabil Res 2003;47:231‑7. 9. Emerson E. Mothers of children and adolescents with intellectual disability: Social and economic situation, mental health status, and the
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Source of Support: Nil, Conflict of Interest: None declared
Indian Journal of Psychiatry 56(2), Apr‑Jun 2014
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