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 Table of Contents  
ORIGINAL ARTICLE
Year : 2020  |  Volume : 36  |  Issue : 2  |  Page : 151-156

Children with intellectual disability, impact on caregivers: A cross-sectional study


1 Department of Psychiatry, Institute of Mental Health, Osmania Medical College, Hyderabad, Telangana, India
2 Department of Child Psychiatry, Osmania Medical College, Niloufer Hospital, Hyderabad, Telangana, India
3 Department of Psychiatry, ESIC Hospital, Hyderabad, Telangana, India

Date of Submission05-Aug-2019
Date of Decision14-Dec-2019
Date of Acceptance27-Jan-2020
Date of Web Publication27-Jun-2020

Correspondence Address:
Dr. Divija Bunga
Department of Psychiatry, Institute of Mental Health, Osmania Medical College, Hyderabad, Telangana State
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/ijsp.ijsp_81_19

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  Abstract 


Background: In India, the magnitude of the problem of intellectual disability (ID) hardly needs any exaggeration. In India, the prevalence varies from 0.63% to 7.14%. Depending on the severity of the ID, children tend to be proportionately dependent on their parents. Aim: The aim is to know the disability impact and the type of impact of having an ID child on the parents. Materials and Methods: Hundred parents of ID children attending the outpatient department (OPD) services either for treatment for behavioral issues or rehabilitation services to child psychiatry OPD of tertiary care hospital. The level of ID is assessed using developmental screening test and the International Classification of Diseases-10. The disability impact on parents is assessed using the modified National Institute of Mentally Handicapped Disability Impact Scale (DIS). Results: 56.63% of parents have disability impact as related to the physical care of the child, financial problems (58.87%), loss of support from relatives and inlaws, and maintaining social relations with friends and neighbors due to social restriction (36.75%) domains of DIS. As the severity of ID increased, disability impact concerning physical care is also increased along with specific negative thoughts. Majority of parents (71.72%) did not feel any kind of embarrassment because of the ID child. 67.3% of the parents had a positive impact like improved tolerance and patience. Conclusions: The current study gives the heartening finding that most of the parents of the selected intellectually disabled children viewed that they have a more positive impact of 67.3% which implies that every family with a disabled child will not have a negative impact nor it is a bad fate or misfortune. In many families, it can have a positive impact like increased Self Efficacy, parental and family general satisfaction with life which helps the parents to provide necessary care and support and handle the situation more gracefully.

Keywords: Caregivers, developmental screening test, intellectual disability


How to cite this article:
Bunga D, Manchala HG, Ravindranath N, Shankar U. Children with intellectual disability, impact on caregivers: A cross-sectional study. Indian J Soc Psychiatry 2020;36:151-6

How to cite this URL:
Bunga D, Manchala HG, Ravindranath N, Shankar U. Children with intellectual disability, impact on caregivers: A cross-sectional study. Indian J Soc Psychiatry [serial online] 2020 [cited 2020 Jul 11];36:151-6. Available from: http://www.indjsp.org/text.asp?2020/36/2/151/288114




  Introduction Top


Intellectual disability (ID), formerly known as mental retardation[1] is characterized by significant limitations both in intellectual functioning (i.e., reasoning, learning, and problem-solving) and adaptive behavior, which covers a range of everyday social and practical skills. In India, the prevalence varies from 0.63%[2] to 7.14%.[3] The causes of ID are multifactorial. Intellectual capability and functioning are influenced by social, economic, cultural, racial, and ethnic factors. Additional environmental factors (prenatal, natal and postnatal factors, exposure to toxins like lead and mercury and iodine deficiency) including the demographics of age, gender, and social status also play a role. Various studies have consistently found the prevalence of mental retardation to be associated with a low socioeconomic status (SES). The parents are confronted with not only feeling of guilt, grief, resentment, and shock but also new role and responsibilities which are new to them.[4],[5] Studies have shown significant psychological distress, particularly anxiety and depression, in parents and other family members, including siblings, having children with ID.[6],[7]

Various reasons of perceived stress among such families include greater financial burden, frequent disruption of family routine and leisure,[6] a lower sense of coherence, difficulties in communication with health-care providers, strain in family relations, level of support within the community.[8],[9] Parents develop different positive and/or negative coping strategies to combat this psychological stress.[10] They have to make changes in their lifestyle, restrictions are imposed on their social life, they have less time for themselves, their leisure and recreational activities get compromised.[11] To help themselves, parents rely on different sources of support such as from relatives, neighbors, and friends, which they seldom get. Strengthening these sources, formal or informal, can help to create a positive impact on their well-being. Although parents report poorer mental health than parents raising normally developing children, they also report feelings of positivity.[12] There is a need to find out how few parents cope with ID to understand how they are positively affected. This would help in understanding the factors that can help in improving coping skills and decrease the negative impact on other parents.

Romans-Clarkson et al. found the mothers of the handicapped children showed significantly more psychiatric morbidity when compared to the fathers and increased divorce rates with the partners when compared to the parents of healthy children.[13]

Abbot and Meredith[14] showed the parents with ID children were less critical with family members, and they had fewer persistent family problems. They have been using “support from spouse,” “participation in similar kind of parent groups,” “religious beliefs” as the important resources used to cope with the challenges of the upbringing of such a disabled child. In a comparative study by Emerson et al., 2003[15] and Malhotra and Sharma[16] – Majority of parents had disability impact as a result of social restriction and loss of support from relatives, in-laws, friends, and neighbors, break up with the partner, strained relationship with other children more than half of the parents felt that their physical health suffered. The severity of ID was found to be significantly related to physical care, loss of support, specific negative thoughts. Some of them have also reported a positive impact on the parent in the form of strengthening their relationship with their partner and with other children. Eisenhower and Blacher showed mothers who were employed and high SES, reported better well-being, especially when their offspring had relatively higher intelligence quotient (IQ) and better adaptive functioning.[17] Hartley et al. showed on occasions when the grown child's behavior problems were higher, mothers' marital satisfaction was lower.[18] Lakhani et al. – Mothers reported acceptance of the situation as a positive contribution to family.[19] Saunders et al. (2015), over half of the caregivers of children with autism spectrum disorder (ASD)/ID reported financial difficulty (52%) and having to stop work to care for their child (51%).[20] Jess et al. found maternal positivity (as it serves a compensatory function) to be a significant independent predictor of maternal stress and moderated the impact of child behavioral problems on maternal parenting stress.[21] Hence, the study aims to assess the level of ID in the child and to know the disability impact and the type of impact of having an ID child and to identify modifiable and nonmodifiable factors associated with a positive or negative impact on parents.


  Materials and Methods Top


It is a cross-sectional study conducted at a tertiary care hospital over a period of 2 months September–October 2018. After approval from our Institutional Ethics Review Board, 100 parents whose children were brought with a history of delayed milestones, behavioral issues, etc., and who had a primary diagnosis of ID according to international classification of diseases (ICD-10) aged 3–16 years were recruited through child psychiatry outpatient department services. Parents who had serious medical and mental illnesses (MIs) before the birth of an intellectually disabled child, deaf and dumb, and those who did not give consent were excluded from the study. A semi-structured intake pro forma including sociodemographic details, identification data sheet consisting of child characteristics such as age, sex, severity of ID, associated medical comorbidities, and behavioral issues. The parent characteristics include a relationship with index child, age, education, income, occupation, etc. Following a written informed consent from the parents, data were collected. Data were tabulated and analyzed using SPSS software-version 24 (IBM Corp., IBM SPSS Statistics for Windows, Armonk, NY, USA).

Instruments: National Institute of Mentally Handicapped Disability Impact Scale

National Institute of Mentally Handicapped (NIMH) Disability Impact Scale (DIS) was developed by the NIMH (now known as NIEPD-National Institute for the Empowerment of Persons with Intellectual Disabilities), Secunderabad. There are 11 areas in this scale such as physical care, health problems, career adjustment, loss of support, financial problems, social restrictions, embarrassment, negative effects on relationships, negative effects on siblings, specific negative thoughts, and positive impact.[22] ID has been diagnosed based on clinical features and ICD-10 (mild, moderate, severe, and profound) and developmental screening test (DST)-DST was used to assess the estimated intelligence of the child along with the development and adaptive behaviors. Developed by Dr. J. Bharatraj in 1977 and revised in 1983.[23] ICD-10.[24]

Statistical analysis

SPSS 24 was used for statistical analysis. Descriptive statistics were done using frequency tables, percentages, Chi-square tests. The analytic study was done using independent samples t-test, ANOVA, and Linear regression analysis. Statistical significance was set at P < 0.05.


  Results Top


The present study comprised parents of 100 ID children. The majority of children belong to 12–16 years of age group (42%) followed by 7–11 (38%) and 3–6 (20%) age groups. More than half (54%) of children belong to severe ID while 40% belongs to moderate and 6% belong to profound ID and among them, 50% of the ID children attended a special school, 44% had no education, and 6% studied till primary school [Table 1]. The sociodemographic details and the distribution of the sample with the variables is shown as in [Table 2]. The parents of the selected Intellectually disabled children viewed that they have a more positive impact (67.3%) than negative impact (35.63%).
Table 1: Severity of intellectual disability across gender

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Table 2: Sociodemographic details of parents and intellectual disability children

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As the severity of ID increases, disability impact concerning physical care is also increased. This observation is statistically significant (P < 0.001) and about 79% of parents did not have any negative thoughts. However, as the severity of ID increases disability impact concerning specific negative thoughts also increased (statistically significant P < 0.05). 21.25% of parents felt their health suffered in the form of mental worries and tensions lead to headaches, disturbed sleep, low mood, etc., because of ID child [Table 3]. The majority of parents did not have an impact on making career adjustments, but 26.35% have to adjust concerning job timings. About 58.87% of parents faced financial problems because of ID children in the family. About 36.75% of parents had disability impact as a result of restrictions from attending social functions, difficulty in pursuing leisure and recreational activities of their own. The majority of parents (71.72%) did not feel any kind of embarrassment because of the ID child. Parents reported that studies of sibling got affected and less time is given to them from parents (23%). On the contrary, a majority of the parents had a positive impact like improved tolerance, patience (67.3%), and generosity. The mean scores of the various domains of NIMH-DIS with respect to severity if ID is shown in [Table 4]. Post hoc analysis was done using least significant difference test between NIMH-DIS domains and severity of ID and the results are shown in [Table 5]. Statistically significant difference was found in physical care domain with respect to moderate, severe and profound ID (P < 0.0001). Similar results for financial (P < 0.0001), social (P = 0.025), embarrassment (P = 0.002), sibling effect (P = 0.003), specific thoughts (P = 0.005), and positive thoughts (P < 0.0001) have been observed [Table 5].
Table 3: Impact of intellectual disability on the caregiver - All domains of the National Institute for the Mentally Handicapped-Disability Impact Scale

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Table 4: ANOVA table: Variance of domains within groups of intellectual disability severity

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Table 5: Post hoc analysis: National Institute for the Mentally Handicapped-Disability Impact Scale domains and severity of intellectual disability

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Regression analysis

As shown in [Table 6], a multiple linear regression analysis was done to predict disability impact in the domains physical care, health, family support, financial, embarrassment, relationships, sibling effect, specific thoughts, and positive thoughts of the NIMH-DIS with the gender of the ID child, education, domicile, parents living together or not, income, type of family, fathers age and mothers age at the time of birth of ID child, family history of ID, behavioral problems, IQ/developmental quotient level, and these variables have statistically significantly predicted impact on the Physical care domain. F (12, 87 = 7.780) r2 = 0.518, P < 0.0001. In the health domain, regression analysis was done and statistically significant for IQ, education, Type of family (F [12, 87 = 22.519] r2 = 0.756, P < 0.0001). In the financial domain regression analysis is found to be statistically significant for IQ level (F [12, 87 = 11.317] r2 = 0.610, P < 0.0001). In the relationships domain, the regression analysis is statistically significant for education, domicile, family history of MI (F [12, 87 = 2.567] r2 = 0.261, P = 0.006). Sibling effect domain the regression analysis showed statistically significant relation with mothers age and fathers age at ID childbirth, IQ, Type of family, Family history of MI (F [12, 87 = 7.794] r2 = 0.518, P < 0.0001). In specific thoughts, the regression analysis showed statistically significant relation with Education, Domicile, Mothers age at ID childbirth, IQ, Family history of MI, Family history of ID (F [12, 87 = 3.826] r2 = 0.345, P < 0.0001).
Table 6: Regression analysis: Disability impact and sociodemographic variables

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With regarding the positive thoughts domain, the regression analysis showed statistically significant relation with education, Mothers age at ID childbirth, IQ, Type of family, Family history of MI, Family history of ID (F [12, 87 = 14.996] r2 = 0.674, P < 0.0001). An independent sample t-test was done between the 2 groups based on the history of medical comorbidities like seizure disorder and scores of various individual domains of the DIS and the test was found to be statistically significant for the DIS health domain. (t = −2.711, P = 0.008) and DIS-positive thoughts domain (t = −2.417, P = 0.018). However, the ANOVA test done between the caregiver's group (mother/father/grandparents) and the scores of various individual domains of the DIS and the test was not found to be statistically significant with any of the domains of DIS.


  Discussion Top


The current study shows that more parents reported a positive impact (67.3%). This implies that they had developed more patience, tolerance, empathy, sensitivity, and better enduring relationships. The maximum negative impact was reported on the domains such as “physical care and financial areas.” Parents were having problems in spending money for the care and training of their disabled children as well as in other necessary domestic requirements. Moreover, the less negative impact has been observed in parents' career activities and specific thoughts.

As the severity of ID increased, the disability impact concerning physical care, health, financial, social, embarrassment, specific thoughts domains also increased (P < 0.001), which has also been replicated in a study done by Eisenhower and Blacher[17] and Malhotra and Sharma.[16]

In the logistic regression analysis done to know the predictors of outcome, the Health domain was statistically effected by the IQ of the child, Education, Type of family. With regarding the Positive thoughts domain showed significant relation with Education, Mothers age at ID childbirth, IQ, Type of family, Family history of MI, Family history of ID, similar results were found in a study done by Eisenhower and Blacher.[17] Reporting of more positive and less negative impact may be due to good support from spouse, better coping strategies, participation in similar kind of parent groups, more awareness regarding the behavioral intervention and modification techniques and availability of training facilities, and various benefits provided by the government and support offered by various nongovernmental organizations, etc. The less negative impact in the area of career may be because many respondents were homemakers and preferred to stay so due to cultural restraints. The findings of the present study are consistent with previous research done by Abbot and Meredith[14] and Stainton and Besser.[25] Negative impact on the parents, in the form of the financial crisis, was also noted by Datta et al.[26] Kearney and Griffin[27] and Emerson et al.[15] also noted the similar results that the parents had both positive and negative emotions toward their children.

Limitations

The ID associated with syndromes such as downs, fragile X, ASDs, and comparison with normal population has not been done. Besides, our sample size was also modest. Therefore, the findings require further replication in larger and longitudinal studies before we can conclude. However, positive constructs do require further study because they do not seem to simply represent the absence of negative outcomes. Furthermore, the exploration of the individual indicators should be continued to understand how they function longitudinally.


  Conclusions Top


It can be concluded that the impact of ID is never restricted to ID individuals, but extends to involve the families also. The current study gives the heartening finding that most of the parents of the selected intellectually disabled children viewed that they have a more positive impact (67.3%) than negative impact (35.63%). Therefore, it is not observed that every family with a disabled child will have a negative impact nor it is a bad fate or misfortune. However, in many families, this problem can create a positive impact, like increased Self-Efficacy, parental and family general Satisfaction with Life, and Positive Perceptions. This is with respect to the childlike acceptance of the situation realistically and standing behind the disabled child. The parents are then able to provide necessary care and support and to see the situation more positively and overcome the situation more gracefully. When the impact of the task of caring is understood the community will be better able to protect its most valuable resource of caring for the family. Approaches that focus on the family are more effective in care, management, and rehabilitation of individuals than approaches that focus only on the child, and more attempts should be made for the primary prevention of ID.

Implications

As ID makes a person incapable of living an independent life, family (particularly parents) has to bear the main burden of caring for such persons. Hence, there is a need to find out how ID is affecting parents, to help those who are having a negative impact and to find out how they are positively affected so that others can be helped in the same manner. More awareness programs and campaigns by the government, private organizations and media, regarding the genetic counseling methods and modifiable risk factors like consanguinous marriages, early and late pregnancies ID, and the methods available to treat them, especially in vulnerable and at-risk populations. Hence, that approaches that focus on the whole family (both parents and the ID child), with respect to the care, management facilities and rehabilitation services, can be designed accordingly by the government which is helpful for both the ID child and the parents.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.



 
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    Tables

  [Table 1], [Table 2], [Table 3], [Table 4], [Table 5], [Table 6]



 

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