|Year : 2017 | Volume
| Issue : 2 | Page : 156-161
Prevalence of depression in mothers of intellectually disabled children: A cross-sectional study
Gourav Chandravanshi, Krishan Kumar Sharma, Charan Singh Jilowa, Parth Singh Meena, Mahendra Jain, Om Prakash
Department of Psychiatry, JLN Medical College, Ajmer, Rajasthan, India
|Date of Web Publication||14-Mar-2017|
Plot No. 13, Raj Nagar Colony, Bazaria, Sawai Madhopur - 322 001, Rajasthan
Source of Support: None, Conflict of Interest: None
Background: Intellectual disability (ID) is a permanent and highly disabling condition. The birth of a disabled child induces complex feelings in mother and other family members. This study was planned to investigate phenomenology of ID and the prevalence of depression in their mothers. Objective: To find prevalence, influence of various sociodemographic variables, and its clinical correlation with depression in mothers of ID children. Study Design: A cross-sectional study. Materials and Methods: A total of 100 patients diagnosed as ID were included in the study. Objective data were collected in a special Pro forma, and mothers of these patients were evaluated with the Beck's Anxiety Inventory and Beck's Depression Inventory. Results: The mean age of patients with ID was 11.52 years, had received an average of 3.01 years of schooling, mean age at diagnosis was 6.01 years, mean intelligence quotient was 45.17, and 79% had significant comorbidities. The prevalence of depression in mothers was 79%; it was more in mothers of female ID child, ID child with significant comorbidities, severer forms of retardation, and with higher levels of anxiety in the mother. Conclusions: The prevalence of depression in mothers of ID children in the present study seems to be much greater than those reported from the previous studies. The determination of predictors of depression among mothers of ID children may help health professionals in identifying mothers at risk. Regular screening of mothers of ID children should be included in the protocol for management.
Keywords: Anxiety, depression, intellectual disability, mental retardation, mothers
|How to cite this article:|
Chandravanshi G, Sharma KK, Jilowa CS, Meena PS, Jain M, Prakash O. Prevalence of depression in mothers of intellectually disabled children: A cross-sectional study. Med J DY Patil Univ 2017;10:156-61
|How to cite this URL:|
Chandravanshi G, Sharma KK, Jilowa CS, Meena PS, Jain M, Prakash O. Prevalence of depression in mothers of intellectually disabled children: A cross-sectional study. Med J DY Patil Univ [serial online] 2017 [cited 2017 Nov 18];10:156-61. Available from: http://www.mjdrdypu.org/text.asp?2017/10/2/156/202103
| Introduction|| |
Intellectual disability (ID) is a disability characterized by significant limitations in both intellectual functioning (reasoning, learning, and problem-solving) and in adaptive behavior (conceptual, social, and practical skills) that emerges before the age of 18 years. ID, formerly known as mental retardation, can be caused by a range of environmental and genetic factors that lead to a combination of cognitive and social impairments.
ID is a permanent and highly disabling condition. The birth of a disabled child induces complex feelings in mother and other family members. Parenting, a child with ID, is an eternal process that affects parents and other family members., Although there are significant roles of both parents in raising a child with ID, mothers are more responsible for the caring, rearing, and education of children with ID than fathers, especially in Asian countries., Hence, it can be said that mothers are the main caregivers for children with ID. Compared with mothers of children with normal development, mothers of children with ID have lower family functioning, a higher caregiver burden, and a lower sense of coherence. As nurturing an ID child is lifelong and time-consuming, the mothers reported that they were emotionally and physically exhausted and felt socially isolated. Parents often have needs during this time that are not addressed by professionals because of the exclusive focus on the child during the evaluation. The studies done in different countries on parents of intellectually disabled child suggested that 35%–53% of mothers of children with disability have symptoms of depression. However, there are a few studies done in India on this topic., We, therefore, Aim to study the phenomenology of ID, prevalence of depression, and anxiety in mothers of children with ID and the relation between demographic variables and depression in the mothers of the intellectually disabled children.
| Materials and Methods|| |
The study was conducted in the Psychiatry Outpatient Department of Tertiary Care Hospital. It is a teaching institute with an attached tertiary care hospital facility. Certificates to intellectually disabled persons are being issued after thorough assessment.
Patients of any age diagnosed as ID according to the International Classification of Diseases-10 criteria of mental retardation, following a clinical evaluation individually by two psychiatrists and whose parents 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 from the study. Relevant history of any significant and/or unstable cardiovascular, respiratory, neurologic, renal, hepatic disease and other organic condition in mothers are excluded from the study.
A sample of 100 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. Patients included into the study were subjected to intelligence quotient (IQ) measurements done by the clinical psychologist. Objective data regarding the demographic details and clinical profile of illness were collected from the mothers in a specialized case record form prepared for the study. Mothers were then administered Beck's Anxiety Inventory (BAI) and Beck's Depression Inventory (BDI). 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. The approval of the Ethics Committee of the Institution was taken.
| Results|| |
Sociodemographic variables of the study population
The mean age of the study population was around 11.52 years (standard deviation [SD] ±4.75). Most of the patients in the study belonged to the age group of 5–15 years (approximately 80%). Every patient in the study received an average of 3.01 years of schooling (SD ± 1.30). Thereafter, the schooling was reportedly stopped. The mean age at which patients were diagnosed as having ID was around 6.01 years (SD ± 1.91). The study sample included 100 intellectually disabled patients, of which 62 were male (62%) and 38 were female (38%). Every patient had an average 2.12 number of siblings and 3% have siblings affected with ID. The mean order of birth of the mentally retarded patients in the study was 1.79 (SD ± 0.81). The mean IQ of the patients was around 45.17 (SD ± 12.33). Most of the ID patients belonged to urban areas (58), and rest belong to rural areas (42). The average total family income of the patients was around Rs. 8000/month. Most of the patients in the study were unmarried, with three patients married (marriage done in childhood).
Most of the patients (up to 84%) were diagnosed as having ID by the age of 10 years. Nearly, 52% patients were diagnosed by the age of 5 years, 32% between the age group of 5 and 10 years, and 10% between the age group of 10 and 15 years. A few patients, 6 out of 100, were first diagnosed as intellectually disabled after the age of 15 years.
Among the 100 patients, 55% were Hindus, 41% patients were Muslims, and rest 4% patients were Christians. The more number of Hindus in the study sample only reflects the population makeup of the area where Hindus are in majority of population followed by Muslims.
Most of the families (64%) belonged to the poorer section with total family income less than Rs. 5000/month. Around 32% of the families had a reasonably good income in the range of 5000–15,000/month. In rest 4%, it is 15,000–30,000/month.
The mean IQ as measured by clinical psychologist was around 45.17. The severity of retardation in patients was assessed using the grades of intelligence. More than half, i.e., 52% of the patients had mild ID while 32% had moderate ID. Severe retardation was evident in 16% of the patients.
Fifty-nine percent of the patients had one or two siblings. Twenty-eight percent had three siblings, 10% had four siblings while 3% have five siblings. Only 3 patients out of the 100 had affected siblings (with ID) in their family. This may point that ID may not run among siblings.
ID 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 (86%). Only 14 patients were of higher birth order.
Delay in speech development was the most universal finding seen in 95% patients. Eighty-one percent of patients had a delay in achieving sensory milestones and 76% patients reported delay in achieving motor milestones.
The family history of ID was present in four patients, and mental illness other than ID was present in five patients.
Comorbidities were reported in 79 patients while 21 patients did not have any comorbidity. Comorbidities thus seem to be very common accompaniment with ID in more than half of the study population. [Table 1] shows the different comorbidities recorded in the study population.
Psychological impact on mothers of mentally retarded children
Beck's Anxiety Inventory score in the mothers of the patients
The mean BAI score was around 18, which depicts significant levels of anxiety in the mother of intellectually disabled children. Mothers of all the patients showed features of anxiety as recorded on the BAI. The severity of the anxiety as assessed according to BAI ratings shows 21 Mothers having severe anxiety, 35 having moderate, 31 have mild, and 13 have minimal anxiety, respectively.
Beck's Depression Inventory score in the mothers of the patients
The mean BDI score was around 29, which depicts significant levels of depression in the mother of intellectually disabled children. Mothers of 79% patients showed features of depression as recorded on the BDI. The severity of the depression as assessed according to BDI ratings depicts 35, 27, and 17 Mothers having severe, moderate, and mild depression, respectively.
Relation between the sociodemographic variables of patients and depression in the mothers
Gender of patient
The prevalence of depression in mothers was seen to be more in female patients (35, 92.1%) as compared to the male intellectually disabled patients (44, 70.96%) (χ2-test = 6.3451, df = 1, P = 0.0117). Thus, the gender of the retarded child poses a significant risk toward the development of stress and depression in their mothers.
46 and 33 mothers belonging to urban and rural regions have depression, respectively. Thus, the prevalence of depression is seen in a similar way in mothers irrespective of their region (χ2-test = 0.008, df = 1, P = 0.9286).
Depression was comparatively more evident in the mothers of Hindu patients (47, 85.45%) as compared to the Muslim patients (32, 78.05%), but the result is not statistically significant (χ2-test = 0.5023, df = 1, P = 0.2503).
Severity of intellectual disability
Depression was seen to be omnipresent in the mothers of patients having severe ID. 100% (16) of patients with severe retardation had depression in their mothers while the prevalence of depression was comparatively lower, 78.12% (38) in mothers of patients with moderate retardation and was least 73.07% (25) 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 were comparatively small (χ2-test = 5.3676, df = 1, P = 0.068304).
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 [Table 2],[Table 3],[Table 4].
|Table 2: Prevalence of depression in mother in relation to delay in motor milestones|
Click here to view
|Table 3: Prevalence of depression in mother in relation to delay in sensory milestones|
Click here to view
|Table 4: Prevalence of depression in mother in relation to delay in speech development|
Click here to view
Presence of comorbidities inpatient
The prevalence of depression in mothers was more, around 92.40% (73) in those patients with significant comorbidities as compared to those who did not have comorbidities, i.e., 28.57% (6). The presence of comorbidities thus poses a significant risk for development of depression in mothers of the intellectually disabled as (χ2-test = 40.7374, df = 1, P = 0.0000).
Severity of anxiety
Most of the mothers who reported severe anxiety had concomitant depression (18, 85.71%).
82.85% (29) of those who had moderate levels of anxiety showed depression. The prevalence of depression was comparatively lower, i.e., 77.41% (24) and 61.53% (8) in mothers having mild and minimal levels of anxiety, respectively (χ2 test = 3.3205, df = 1 P = 0.3448 [not significant]).
| Discussion|| |
The study was carried out in the outpatient Department of Psychiatry at Tertiary Care Centre. Mothers, who come to Psychiatry Department for certification or treatment for behavioral problems of their intellectual disabled child, were recruited after written informed consent. The mean age at which patients were diagnosed as having ID was around 6.01 years (SD ± 1.91). This delayed diagnosis is a matter of worry. Some of the reasons elicited are social stigma, lack of knowledge about mental illness and mental retardation, poor financial sources, lack of an effective system of routine child health checkups. Most of the ID children were deprived of schooling. This needs the encouragement of special schools. Although special schools are being working for the intellectually disabled persons, ID patients are not getting benefit. The reasons for this are less availability of these schools, distance from home, high fee structure, and lack of awareness. This issue needs attention of the government.
Most of the intellectually disabled children have history of delay in developmental milestones such as speech, sensory, and motor. The prevalence of psychiatric comorbidities seen in this study is 79% which is similar to the findings of the study done in India., This high prevalence is in contrast to other studies done in different areas of the world.,,,, Where it is reported to be on lower side which could be due to different types of psychometric tools used, difference in the age of children, setting of the study, geographical variation that implies difference in culture, economic status, and health-care service.
In our study sample, 79% of the mothers of the mentally retarded suffer from depression. This is in line to study done by Nagarkar et al. The prevalence seems to be much greater than seen in various previous studies which suggested that 35%–53% of mothers of children with disabilities have symptoms of depression.,,, The depression seen in Indian studies is more than the studies done around the world. In Asian countries, people expect their children to take care of them during old age; however, in case of children with ID, parents have to be the caregivers for the children throughout their life. This may be a burden for aging parents and gives rise to negative attitudes. This scenario, however, is different from that in Western countries where children are not expected to take care of aging parents.,
The mothers experience distress due to high expectations from children with ID, comparison of their children's deficits and behavior with normally developing children, irreversibility of the ID, irrational belief that ID was God's punishment for sins committed in the past, anticipation of future, and caring demand. Cultural and social stigma are also likely causes of isolation and withdrawal from society and social gathering. They may want to avoid the embarrassment at social gatherings where people ask about the children's disability and also fear that these people may not interact appropriately with their children.,
Depression was more prevalent among mothers of female patients in our study (P = 0.0117). The prevalence of psychological stress was found to be more in mothers of female intellectually disabled children. Thus, the gender of the retarded child poses a significant risk toward the development of stress and depression in their mothers. It is due to the fact that female intellectually disabled patients are considered a social burden in the Indian scenario. Mothers have to watch out for daily living activities including menstrual cycle in female mental retarded patients. Depression in the mother caretakers is, therefore, understandable. It is seen that more severe the retardation, more is the prevalence of depression in mothers. As the severity of mental retardation increases, dependency on mother for daily activities increases. The prevalence of depression increases with the levels and severity of anxiety in the caretaker.
In our study, it is seen that religion has not much correlation while caring for their intellectually disabled child, which is similar finding to the previous studies., However, large sample size is required to give any critical comment on this.
The prevalence of depression in mothers was more, around 92.40%, in those patients with significant comorbidities as compared to those who did not have comorbidities, i.e., 28.57% (P = 0.0000 significant). This significant association was reported by many previous studies ,,, 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 and attention. Comorbidities such as epilepsy, behavioral problems, 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. Adequate measures to address these issues might relieve the mothers of some stress they have to deal with. The negative attitudes of mothers and the community should be changed through psychological interventions which will reduce psychological problems and enhance the psychological well-being of mothers of children with ID. Medical services offered to the intellectually disabled should move from an individual level to the family level. Regular screening of family members, especially mothers of the intellectually disabled should be included in the protocol for the management of mental retardation. Community-based approaches (e.g., school-based approach) to address stigma in low-income settings could be encouraged. In school-based approach, school children (often the only educated members of the community) are trained to educate not only their peers but also parents and other community members. This approach may be useful component of a health system level intervention. Special schools should be encouraged for developing skills in daily living activities and social skills training in intellectually disabled children, thereby reducing stress in their mothers. 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.
| Conclusions|| |
The prevalence of depression in mothers of intellectually disabled children in the present study seems to be much greater than those reported from the studies around the world. The determination of predictors of depression among mothers caring for intellectually disabled children may help health professionals in identifying mothers at risk.
- Small sample size
- As it is cross-sectional study and follow-up of the study participants were not done, consistency of results cannot be obtained
- This is a hospital-based study so that bias may have occurred in the selection of sample population and so results obtained may not be applied to universe
- Different levels of personality traits have not been taken into consideration, which also influences on perception of anxiety and depression.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
American Association on Intellectual and Developmental Disabilities. Overview of Intellectual Disability: Definition, Classifications and Systems of support. Washigton: American Association on Intellectual and Developmental Disabilities; 2010.
Gupta A, Singhal N. Positive perceptions in parents of children with disabilities. Asia Pac Disabil Rehabil J 2004;15:22-35.
Hassall R, Rose J, McDonald J. Parenting stress in mothers of children with an intellectual disability: The effects of parental cognitions in relation to child characteristics and family support. J Intellect Disabil Res 2005;49:405-18.
Kumari V. Parental involvement and expectations in promoting social and personal skills of mentally challenged children [dissertation]. Dharwad, India: Dharwad University; 2009.
Roach MA, Orsmond GI, Barratt MS. Mothers and fathers of children with Down syndrome: Parental stress and involvement in childcare. Am J Ment Retard 1999;104:422-36.
Guolaugsdottir S. The experience of mothers of children with autism: Ahermeneutic phenomenological study [dissertation]. London, UK: The Royal College of Nursing Institute; 2002.
Manor-Binyamini I. Mothers of children with developmental disorders in the bedouin community in Israel: Family functioning, caregiver burden, and coping abilities. J Autism Dev Disord 2011;41:610-7.
Li-Tsang CW, Yau MK, Yuen HK. Success in parenting children with developmental disabilities: Some characteristics, attitudes, and adaptive coping skills. Br J Dev Disabil 2001;47:61-71.
Emerson E. Mothers of children and adolescents with intellectual disability: Social and economic situation, mental health status, and the self-assessed social and psychological impact of the child's difficulties. J Intellect Disabil Res 2003;47(Pt 4-5):385-99.
Nagarkar A, Sharma JP, Tandon SK, Goutam P. The clinical profile of mentally retarded children in India and prevalence of depression in mothers of the mentally retarded. Indian J Psychiatry 2014;56:165-70.
] [Full text]
Dave D, Mittal S, Tiwari D, Parmar M, Gedan S, Patel V. Study of anxiety and depression in caregivers of intellectually disabled children. J Res Med Dent Sci 2014;2:8-13.
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. Depression in mothers and fathers of children with intellectual disability. J Intellect Disabil Res 2001;45(Pt 6):535-43.
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.
Bailey DB Jr., Golden RN, Roberts J, Ford A. Maternal depression and developmental disability: Research critique. Ment Retard Dev Disabil Res Rev 2007;13:321-9.
Totsika V, Hastings RP, Emerson E, Lancaster GA, Berridge DM. A population-based investigation of behavioural and emotional problems and maternal mental health: Associations with autism spectrum disorder and intellectual disability. J Child Psychol Psychiatry 2010;52:91-9.
McCallion P, Janicki M, Grant-Griffin L. Exploring the impact of culture and acculturation on older families care giving for persons with developmental disabilities. Fam Relat 1997;46:347-57.
Webster RI, Majnemer A, Platt RW, Shevell MI. Child health and parental stress in school-age children with a preschool diagnosis of developmental delay. J Child Neurol 2008;23:32-8.
Lakhan R, Sharma M. A study of knowledge, attitudes and practices (KAP) survey of families towards their children with intellectual disability in Barwani, India. Asia Pac Disabil Rehabil J 2010;21:102-17.
Bumin G, Gunal A, Tukel S. Anxiety, depression and quality of life in mothers of disabled children. SDU Tip Fak Derg. 2008;15:6-11.
Hill F, Newmark R, Le Grange LL. Subjective perceptions of stress and coping by mothers of children with an intellectual disability: A needs assessment. Int J Spec Educ 2003;18:36-43.
Majumdar M, Silva Pereira YD, Fernandes J. Stress and anxiety in parents of intellectually disabled children. Indian J Psychiatry 2005;47:144-7.
] [Full text]
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.
Brust JD, Leonard BJ, Sielaff BH. Maternal time and the care of disabled children. Public Health Nurs 1992;9:177-84
[Table 1], [Table 2], [Table 3], [Table 4]