| Abstract|| |
Background: Management of behavioral problems in children with intellectual disabilities (ID) is a great concern in resource-poor areas in India. This study attempted to analyze the efficacy of behavioral intervention provided in resource-poor settings.
Objective: This study was aimed to examine the outcome of behavioral management provided to children with ID in a poor rural region in India.
Materials and Methods: We analyzed data from 104 children between 3 and 18 years old who received interventions for behavioral problems in a clinical or a community setting. The behavioral assessment scale for Indian children with mental retardation (BASIC-MR) was used to quantify the study subjects' behavioral problems before and after we applied behavioral management techniques (baseline and post-intervention, respectively). The baseline and post-intervention scores were analyzed using the following statistical techniques: Wilcoxon matched-pairs signed-rank test for the efficacy of intervention; χ2 for group differences.
Results: The study demonstrated behavioral improvements across all behavior domains (P < 0.05). Levels of improvement varied for children with different severities of ID (P = 0.001), between children who did and did not have multiple disabilities (P = 0.011).
Conclusion: The outcome of this behavioral management study suggests that behavioral intervention can be effectively provided to children with ID in poor areas.
Keywords: Behavioral assessment scale for Indian children with mental retardation, behavioral problems, community-based rehabilitation, India, intellectual disabilities, multiple disabilities, tribal population
|How to cite this article:|
Lakhan R. Behavioral management in children with intellectual disabilities in a resource-poor setting in Barwani, India. Indian J Psychiatry 2014;56:39-45
| Introduction|| |
People with intellectual disabilities (ID) have a wide range of needs  and most exhibit behavioral problems. Around 7-15% of people with ID have severely challenging behavioral problems.  The nature and severity of these behavioral problems vary with the degree of ID.  In children with ID, the social environment in which they live and interact also shapes their behavior.  Having a child with ID is stressful for families  and the child's behavioral problems can create additional stress and frustration for parents and caretakers.  Furthermore, behavioral problems also impede the child's learning in a number of settings, including at school and at home. Many children with ID in rural communities are isolated from their peers and are therefore deprived of interaction and play because of their behavioral issues. This isolation limits their opportunities to learn through observation and interaction with other children, as reported in a previous study in India.  Due to a lack of awareness and knowledge, such behavioral problems are mistakenly considered manifestations of mental illness. However, in people with ID, behavioral problems do increase the likelihood of mental illness and can lead to serious life-threatening situations if not treated. ,
Managing behavioral problems is a major concern in the comprehensive rehabilitation of people with ID. Children with ID that attend schools receive some form of behavioral management, irrespective of the nature of school (special or regular). In rural India, where the majority of children with ID do not attend school, there is no institutional support in place to help children with their behavioral problems.  In addition, the outreach activities performed by rehabilitation institutions in rural communities are poor. Insufficient awareness, misinformation, malpractice and social issues negatively affect the management of behavioral problems in children with ID in rural communities. In the absence of institutional support, parents apply various methods of handling such behavioral problems. Three approaches are prominent in rural communities: First, parents often ignore the behavior. Second, they may offer the child something to eat or to play with. Finally, the third method involves punishing the child physically or verbally. According to the principles of behavior modification, children's undesired behaviors get stronger and more when behavior management involves inconsistent or inadequate reinforcement.  There is an unmet need for studies that focus on behavioral interventions for children with ID that live in low- and middle-income countries.  For example, we do not yet know which ID benefit more from behavioral intervention or if there is any relationship between a child's intelligence quotient (IQ) (a child who has ID) and their behavioral improvement after an intervention. 
There are limited resources available for people with ID who live in poor rural areas in India because most of the government rehabilitation institutions in India are in cities and they do not often reach out to the people in poor rural areas. Rural populations in India are primarily served by non-governmental organizations (NGOs) that are not well-equipped because of little financial support from the government and infrastructures that are inadequate for serving most of India's population (68.84%), which is located in rural areas.  Most of these NGOs are adapting a community-based rehabilitation (CBR) approach because it is cost-effective, feasible and empowers people with disabilities and the communities in which they reside. 
A CBR approach allows people with ID to receive comprehensive rehabilitation in their own environment. , Due to the lack of government rehabilitation institutions, Ashagram Trust (AGT), an NGO started in 1983, successfully implemented a CBR program for rehabilitating chronically and severely mentally ill people in the Barwani district of Madhya Pradesh, , which is one of the poorest districts in India.  The population of this district is made up of tribal (68%) and non-tribal (32%) groups. The rural population is mostly tribal and is severely deprived of health care, education and other government programs. Only 8.3% of the people in this district receive safely piped drinking water, whereas only 4.3% have access to a toilet. In addition, 62% of girls marry before the age of 18.  The majority of the tribal population lives in small villages that are not well connected to cities because of poor or non-existent roads and limited transportation. The similarly impoverished tribal districts of Khargoon, Dhar and Jhabua surround Barwani and these populations were also provided access to medical and rehabilitation services through the clinic and rehabilitation center located at the AGT campus in Barwani.
- Do gender, age, population type, socioeconomic status, category of ID, interventional settings and associated conditions affect the outcome of behavioral intervention in children with ID?
- Does improvement take place across all domains of behavioral problems in children with ID who have received behavioral intervention?
| Materials and Methods|| |
This study consists of a longitudinal research design. Children with ID from 3 to 18 years of age (9.57 ± 3.57) and IQ (43.83 ± 15.62) received behavioral intervention by AGT. While taking case histories, parents were asked if their child had any behavioral problems. Often parents reported that children were stubborn, did not listen, cried all the time, bit people, fought, etc., the behavioral assessment scale for Indian Children with Mental Retardation (BASIC-MR) was administered on every child who was described as having a behavioral problem. The BASIC-MR lists 75 behavioral problems in 10 domains based on their nature. Peshawaria and Venkatesan  at the National Institute for Mentally Handicapped, in India, developed this tool. In most settings, this tool is applicable for evaluating and treating behavioral problems in persons with ID. A decline in score is considered to be an improvement in behavior (reduced behavioral problems). Participants' behavioral progress was monitored and recorded periodically, at least every month by CBR workers and every 3 months by professionals. Behavioral interventions were performed in two settings: A CBR setting and a clinical setting, both described in detail below. Children in the CBR group received medication for attention deficit hyperactivity disorder, epilepsy and mental illness, but they were not given any psychotropic medications for their behavioral problems. Behavioral outcomes were measured on each child using the BASIC-MR after 1 year of intervention was completed.
Participants and families
Consequently, most parents did not have information about their child's ID condition. Because of their behavioral problems and issues functioning in day-to-day life, the children in the study were not enrolled in school. Many children were also isolated within their own families, which resulted in neglect and in some cases even being beaten and chained. Children may have benefited if they were allowed to play with other children in community and participate in social activities, but most were shunned because of stigma: Many people in the community believe that children with ID can transfer their disabilities to other children. Some of the children's behavioral problems may have resolved if they were placed in schools. Most of children with ID who participated in the study had not subsequently received any kind of rehabilitation service. Many of the study participants had been treated in private or government hospitals for medical needs, but they had not been provided information on their ID.
Selection of participants
In the CBR setting, 262 children with ID were served. Out of this group, 211 had some form of behavioral problem. Of these 211 children, 128 were excluded from the study because they had the least severe form of ID (Borderline), incomplete information in their file, poor parental support, frequent absence from the community, insignificant behavioral problems, or they had died. Children with borderline ID were excluded because their problems were mild and their parents viewed their problems either as an adjustment or as a result of academics. For this group of children, CBR focused on enrolling the children in schools. Thus, the level of intervention for children with borderline ID was different than the rest of children with ID. Behavioral intervention in a clinical setting was provided for a total of 95 children with ID (from 2005 to 2007). Out of these 95 children, 64 had some form of behavioral problem and 43 of these 64 children were excluded for similar reasons to those described above the breakdown of study participants can be seen in [Figure 1].
The CBR project was implemented by the Barwani-based NGO AGT from 2000 to 2010. Action Aid India financially supported the project. This project aimed to provide rehabilitation services to people with all types of disabilities in a community setting. Conversely, the clinic was operated on the AGT campus twice per week exclusively for populations who were not supported by any of the AGT projects. AGT supported the infrastructure of the clinic. A specialist in mental retardation (RL) and his colleague (SB) served in the clinic once per week; RL and SB were employed by AGT but financially supported through action aid. In both the CBR and clinical setting, written or oral (because of poor literacy) informed consent was obtained from every child and parent in order to anonymously use data obtained in the study for research purposes. The populations treated in both settings were similar in characteristics and demographics, but the mode of behavioral intervention was different between settings. Two professionals specializing in ID collectively provided behavioral intervention in both treatment settings (one professional is author of this paper). The behavioral interventions were divided between both professionals and these professionals often substituted for each other. Thus, most study participants were treated by both professionals.
AGT was responsible for providing behavioral intervention to children with ID in the CBR setting. Children with ID were assessed at home or in a camp setting. Interventions were designed by professionals but were carried out by CBR workers (CBRWs) and parents in the home and at non-formal education (NFE) centers. Every month children received 1-2 1-h sessions of intervention by CBRWs and at least 1 1-h session by a therapist, either at home or in a camp setting. Of Interventions were regularly supervised and monitored with parents, NFE teachers and CBRWs. NFEs were operated by the project in certain villages in order to teach basic academic skills and motivate disabled and non-disabled children to return to or join school. A variety of community awareness activities were arranged, such as street plays, community meetings, parent meetings, musical nights, visits to other rehabilitation centers and distributions of informational material. Parents of children with ID were given a 1-week training course at the AGT campus to teach them how to handle and manage their children's behavioral problems. Interventions were regularly monitored by the CBR program staff and reviewed annually. Children with ID were linked to various schemes to receive their disability (social security), school pension and employment opportunity in National Rural Employment Guarantee Scheme. The CBR program only served participants from 63 villages in the Barwani district.
In the clinical setting, interventions were offered by professionals and also explained by CBR workers. Some behavior modification techniques used in the interventions were shown to the parents. Parents were provided information on various behavioral intervention schemes and were encouraged to practice them. In the clinical setting, the community from with the participant hailed was not involved in any community awareness activities. Follow-up of participants in the clinical setting involved parents bringing the children back to the clinic when it was convenient. However, children were asked to come back every 6 weeks for follow-up. On average, every child received a session of approximately ½ h by professionals and CBR workers every 2 months. Participants who underwent clinical intervention came from the districts of Dhar, Jhabua, Kargoon and Khandwa.
Diagnosis and classification
All children were administered at least two diagnostic tests: The developmental screening test (DST) and the Vinland Social Maturity Scale (VSMS), where DST can be used to determine the development quotient (DQ) and VSMS can be used to find the social quotient (SQ). The average of DQ and SQ was taken to be the IQ used for diagnosis and ICD-10 classification. This is the standard practice for obtaining IQ scores at the National Institute for Mentally Handicapped in Secunderabad, India. Other intelligences tests, such as the Indian adaptation of the Stanford Binet Kamat Test, Malin's Intelligence Scale for Indian Children and Bhatia Battery, were used as needed. ,
Behavioral problems reported by parents were recorded in the study participants' case files and behavioral goals were chosen during parental consultations. A behavior modification plan was prepared after conducting the functional behavior assessment, which provides a clinical function of behavior.  In behavior modification, the function is considered to be the cause of the behavior and it is necessary to address the function of the behavior in order to address it. We applied a variety of behavioral modification techniques during interventions. These techniques were selected on the basis of the participant's specific behavioral problem, its function, the severity of the problem and the ability of parents to carry out and conform to the technique. Approximately 3-4 techniques were applied to each study participant at a time and the techniques used varied on a case-by-case basis. The behavioral techniques used are follows: (a) Restructuring the environment - we tried to prevent the behavior from occurring by changing the setting; (b) extinction - the regulating function of behavior was removed on the occurrence of the behavior; (c) token economy - tokens, such as a star or cards, were given to participants, when they exhibited desired behavior, which could be redeemed for edible items at local shop; (d) over correction - participants were instructed to undo the exhibited behavior. For example, if an item was thrown by a child, the child was instructed to bring the item back and fix the damage or disturbance that occurred as a result of the undesired behavior; (e) response cost - earned privileges, such as tokens, were withhold if the participant exhibited the behavior; (f) differential reinforcement for incompatible/alternate behavior - behaviors that prevented the occurrence of the problem behavior were encouraged; (g) differential reinforcement for low-frequency behavior - positive behaviors that did not occur often were rewarded; (h) differential reinforcement for other - any positive behavior in place of an undesired behavior was rewarded; (i) physical restraining - the child was physically restrained to stop the undesired behavior; (j) time out - the child was removed from the location where the unacceptable behavior was displayed. In addition to being exposed to behavioral interventions, study participants also underwent training on personal care skills, given a daily schedule to follow and were involved in household activities wherever possible.
Statistical Package for Social Science software (SPSS version 21, manufacturer - IBM) was used for analyses. The baseline scores were compared with the post-intervention scores of each behavioral domain using Wilcoxon matched-pairs signed-rank test. The χ2 was used to determine differences between different age intervals, genders, population types, poverty levels, severity of ID, number of disabilities and interventional setting. Non-parametric tests were preferred over parametric tests because of non-homogeneity, skewedness and kurtosis (>0) of the data.
| Results|| |
[Table 1] categorizes the study participants using variety characteristics and shows statistical differences between groups. We found that the majority of the study participants were impoverished, highlighted by the fact that only 8.7% of children in the study came from a family with middle socio-economic status, while all others either very poor (55.8%) or poor (35.6%). Families that were considered very poor did not have any source of income other than seasonal manual work, while poor families also depended on seasonal manual work but had a few cattle. Middle class families were those that had cattle and some agricultural land. Categorizing participants by the severity of their ID showed that 31 children (29.8%) had mild ID, 46 (44.2%) had moderate ID, 18 (17.3%) had severe ID and 9 (8.7%) had profound ID respectively. The presence of an additional disability along with ID, such as cerebral palsy, epilepsy, mental illness, or Down syndrome was present in 39 children (37.5%). Although their primary disability was intellectual, children with such additional disabilities were considered to have multiple disabilities. It is also important to note that the majority of study participants (79.8%) received behavioral intervention in a CBR setting, while only 22.2% underwent intervention in a clinic [Table 1].
The baseline and post-intervention scores (overall scores and scores separated by domain) were compared using Wilcoxon matched-pairs signed-rank test. Post-intervention scores for each domains and the overall final BASIC-MR score were significantly lower than corresponding baseline scores (P ≤ 0.001), representing statistically significant behavioral improvements across the board [Table 2].
|Table 2: Wilcoxon matched‑pairs signed‑rank test-participants' baseline and post‑intervention scores of the BASIC‑MR (median of differences between baseline and post‑intervention equals zero)|
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The number of behavioral problems ranged from 2 to 16. Parents of children in the clinical group had a 75% follow-up rate, while children in the CBR group achieved a follow-up rate of almost 100%. However, in many cases (approximately 20%) parents were not able to perform the follow-up tasks. In those cases CBRWs spent more time and connected those children with village volunteers (not paid by the project) and NFE teachers to help families with the tasks. Mothers were found to be more involved in management of behavioral intervention than fathers. However, we did not maintain systematic records regarding this tendency. Overall, the living conditions of tribal children were extremely poor. Approximately 15% of children were found to be sleeping close to livestock, such as goats and chicken. Many of these children had skin problems.
| Discussion|| |
Behavioral intervention was found to be effective in both interventional settings: In the CBR and in the clinic. However, improvements varied according to the level of ID, the presence of additional disabilities (multiple disabilities group). The age of participants did not affect behavioral outcomes in this study, which is inconsistent with some studies , and consistent with others.  The improvement level was found to be different depending on the severity of ID, which can be attributed to the different behaviors that are associated with different severities of ID. 
While the needs of Indian parents have been fount not to vary with the severity of their child's ID,  in this study we observed, in both the CBR and clinical setting, that parents having children with mild and moderate ID were more concerned about their behavioral problems. This concern was likely one reason that these particular parents focused more on their child's behavioral management than parents having children with severe and profound ID. Less dramatic behavioral improvements occurred in children with severe and profound ID and in children who had multiple disabilities. One reason for this finding may relate to the nature of their behavioral problems; these children exhibit more self-injurious behaviors  and they tend to have higher chances of genetic disorders or medical conditions. It is possible that their undesired behavior may arise from the pain they are experiencing from such medical or genetic conditions.  In addition, many children with severe and profound ID were living in much poorer and unhygienic conditions than children who had moderate and mild ID. Such unhygienic conditions may have affected the development of skin infections and resulted in tissue damage and self-injurious behavior.  In parent meetings and trainings, we observed that parents having children with severe or profound ID were somewhat withdrawn and less hopeful about the prognosis of their child's condition compared with other parents. They were more concerned about their child's personal needs, such as helping with eating, toileting, brushing and dressing, sitting, standing, walking and talking. Such parents were more immediately concerned with their child's basic survival, which is related to how well the child can take care of his or her basic personal needs independently. Children with profound and severe ID who are unable of taking care of their personal needs have shortened life spans.  This mind-set shifted their focus away from behavioral management.
Baseline and post-intervention BASIC-MR scores across all behavior domains of the scale declined significantly. Behavioral intervention was found to be clinically significant for reducing the frequency, magnitude and duration of poor behaviors. These findings are consistent with several studies that have demonstrated the positive effects of behavioral intervention. , Intervention in the CBR setting was effective and would be consistent with a large-scale community-based study in a developed county focusing on children with developmental disabilities. 
Most studies of this nature are conducted with small sample sizes, mostly involve a single subject and apply few behavioral modification techniques.  Our study had a large sample size and included longitudinal research that employed a range of behavior modification techniques. In addition, the study included a remote, impoverished and highly uneducated population but was able to involve parents, families and community members. Parental involvement was the key element of success in this program. In both settings, other than behavioral management, we encouraged parents to acquire behavioral skills, change their negative attitudes toward their children and develop better adjustment and coping abilities. Psycho education and involvement of parents in the delivery of behavioral management has been suggested previously. ,
| Limitations and Confounding Factors|| |
There was limited data from participants in the clinical setting; these participants had significantly different characteristics than those in the CBR setting. In addition, in CBR behavioral interventions, parents and CBR workers along with professionals were involved in implementing and monitoring progress of the behavioral intervention, while in the clinical setting, parents were only provided with information about how to perform behavioral interventions. Thus, it is difficult to compare results from these different settings. Other possible confounding factors associated with the CBR setting may have been the relocation of key CBR workers within the CBR area, frequent migration of families, sickness of participants, myths, misbeliefs, cultural practices, parental attitudes, parental cooperation and (to some extent) the language barrier between professionals and parents. Furthermore, because of the many activities and interactions between parents and the professionals or CBR workers built close, trusting relationships. As such, parents may have reported more favorable outcomes than actually occurred.
| Conclusions|| |
This study demonstrated an overall decline in undesirable behaviors in the study participants. However, improvements occurred differently in children with different severities of ID. Improvement did not occur equally between children who had additional disabilities versus those who did not have any additional disabilities (beyond ID). Improvements were also equal between children who received intervention in the CBR setting and those who received it in the clinic. The findings of this study are relevant to various rehabilitation and educational settings where people with ID get help managing behavioral problems and undergo educational placement.
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Department of Epidemiology and Biostatistics, School of Health Sciences, College of Public Service, Jackson State University, Jackson, MS
Source of Support: None, Conflict of Interest: None
[Table 1], [Table 2]