Published for the British Institute of Learning Disabilities
Journal of Applied Research in Intellectual Disabilities 2016, 29, 211–219
Identifying Children with Intellectual Disabilities in the Tribal Population of Barwani District in State of Madhya Pradesh, India Ram Lakhan and Anthony R. Mawson School of Health Sciences, College of Public Service, Jackson State University, Jackson, MS, USA
Accepted for publication 27 September 2013
Background Low-and middle-income countries (LAMI) lack an integrated and systematic approach to identify people with intellectual disabilities. Screening surveys are considered resource-intensive; therefore, alternative approaches are needed. This study attempted to identify children up to age 18 years with intellectual disabilities through a mixed-method approach involving focus group interviews (FGIs) and door-to-door surveys. Materials and Methods Focus groups were conducted with the assistance and involvement of local leaders in four villages of Barwani district of Madhya Pradesh with a 99% tribal population in all four villages. A formal survey of the community was then conducted to determine the prevalence of intellectual disabilities based on a standardized screening instrument (NIMH-DDS). Results Thirty focus group interviews were conducted involving 387 participants (males 284, females 103) over a period of 13 days. The entire adult population (N = 8797) was then surveyed for intellectual disabilities
Introduction Intellectual disability is a condition that originates before age 18 and is characterized by significant limitations in intellectual functioning and adaptive behaviour, as expressed in conceptual, social and practical skills (Schalock & Luckasson 2004). The prevalence of intellectual disability is estimated at 1–4% worldwide (Mercadante et al. 2009). There are estimates of the number of people in India with intellectual disabilities, but the nature of the disability as well as associated conditions and differing diagnostic criteria used in previous studies make it difficult to estimate the prevalence of intellectual disabilities throughout the nation. A review of epidemiological studies (Girimaji & © 2015 John Wiley & Sons Ltd
using a standardized screening instrument. The data revealed a close similarity in the prevalence rates of intellectual disabilities, as determined by the two approaches (Focus Group Interviews, 5.22/1000 versus Survey, 5.57/1000). Conclusion A qualitative method using FGIs successfully identified people with intellectual disabilities in an economically deprived tribal area, showing that a community-based approach provides a close estimate of intellectual disabilities based on a formal survey using standard diagnostic criteria. These data suggest that FGI, along with other qualitative data, could be helpful in designing and in serving as an entree for communitybased interventions. Keywords: community-based rehabilitation, intellectual disabilities, low-and middle-income countries, mixedmethod research, prevalence
Srinath 2010) concluded that the point prevalence of intellectual disabilities ranges from 1 to 32 per 1,000, depending on the case definition, methodology and population selected. Epidemiological studies using ICD10 criteria of intellectual disabilities have shown huge variation in the prevalence of intellectual disabilities in India, from 3.4 per 1000 (IQ < 50) for persons with intellectual disabilities in a rural community (Narayanan 1981) to as high as 34.2 per 1000 for persons with severe intellectual disability (Belmont 1984). Population-based epidemiological studies of intellectual disabilities have not been carried out in India (Maulik & Harbour 2010). High-income countries have integrated systems of identifying children with intellectual disabilities in their 10.1111/jar.12171
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health, education and social care system (Robertson et al. 2012a and 2012b), which allows agencies to address the needs of identified high-risk children (Sonnander 2000). However, such a system is lacking in low-and middle-income countries (LAMI). There is need for an integrated system to identify children with disability. Robertson et al. (2012a,b) reported that several studies in LAMI countries have applied different approaches to identify high-risk children. Most of them have used screening tools, which are developed and standardized in western population. Western tests translated in local languages are common for identifying children with risk of intellectual disabilities in LAMI countries, but mere translation of western tests into the local language may not provide the most appropriate results (Gladstone et al. 2008; Robertson et al. 2012a,b). A screening test should have reliability and validity in terms of sensitivity, specificity and needs to be standardized for the population in which it is being used (Chopra et al. 1999; Glascoe 2007). Cross-sectional screening surveys are carried out in many LAMI countries to identify children at high risk of intellectual disabilities. Maulik & Darmstadt (2007) reported in their systematic review that Ten Questions (TQ) screening was commonly used in LAMI countries. TQ is reportedly a valid, reliable and sensitive screening tool for 2–9 years aged children in many countries, including India. It was found 100% sensitive in India, but its positive predictive value (PPV) for males (61%) was higher than for girls (31%). (TQ is also claimed to be the cost-effective, rapid screening tool for use by community workers (Singhi et al. 2007)). Overall, such surveys are costly, time-consuming and perform poorly in identifying people with intellectual disabilities (Kuruvilla & Joseph 1999; Gona et al. 2006). Alternative approaches, key informant methods (Thorburn et al. 1991), rapid rural appraisal (RRA) (Kuruvilla & Joseph 1999) and participatory rural appraisal (PRA) (Gona et al. 2006) were also used in LAMI countries. RRA and PRA both involve the community in identifying children with intellectual disabilities and have been found useful in creating community awareness. The PRA method was less expensive compared to house-to-house surveys, while RRA could not identify children younger than 2 years of age and those under age 5 with a mild level of disability. To design appropriate interventional programmes and strategies, it is important for agencies serving particular communities to have an approximate idea of the number of people affected with intellectual disabilities. Ashagram Trust (AGT) is a non-government
organization that has been focusing on major mental illness and leprosy in Barwani and adjoining districts. This organization planned to provide rehabilitation services to people with intellectual disabilities under financial support from Action Aid international in 63 villages of Barwani block, using a community-based rehabilitation (CBR) approach. A long-term CBR project for 10 years sponsored by this organization in 2000 aimed to provide comprehensive intervention to all people with disability in the community. Action Aid allowed AGT to conduct a cross-sectional study to identify children with intellectual disabilities in their consultations. The initial phase of the project was to identify people with disability, as government data on disability in the community are inaccurate; this was the biggest challenge faced by the team. The idea of screening children for intellectual disabilities by administering standard tests to every child was considered too expensive and time-consuming. As we were initiating a community-based programme, the team wanted to involve the community at the start of the project. According to the Department for International Development (DFID), Barwani – a tribal district of Madhya Pradesh state – is among the 100 poorest districts in India (RTF 2003). At the time of the study, over half (53%) of the population of this district lived below the poverty line and most villages lacked all-season roads, electricity, safe drinking water and health facilities (Chatterjee et al. 2003). Only 4.3% have access to a toilet, 8.3% to safe piped drinking water. Approximately 62% girls marry before the age of 18. The tribal population is severely deprived of health care, education and government programmes (JSA 2010). Currently, the community-based approach to providing rehabilitation services to individuals with disability is popular and is being followed in 90 countries (Robertson et al. 2012a,b). AGT believed that the CBR model was more useful due to its cultural sensitivity (Lightfoot 2004), accessibility and cost-effectiveness. Following the principles of CBR, the AGT project team wanted to develop an approach to identify people with intellectual disabilities. The team therefore decided to use a mixed-method research approach. A study conducted in Pakistan highlighted the importance of a mixedmethod approach in community-based interventions for persons with intellectual disabilities in low- and middleincome countries (Mirza et al. 2009). Mixed-method research is considered superior to single-method research due to its pluralism or ability to provide alternate perspectives on issues (Johnson & Onwuegbuzie 2004). © 2015 John Wiley & Sons Ltd, 29, 211–219
Journal of Applied Research in Intellectual Disabilities
Our team chose to conduct focus group interviews (FGI) in selected communities and then door-to-door surveys as qualitative and quantitative methods, respectively. Kuruvilla & Joseph (1999) also suggested using a screening tool in door-to-door surveys with RRA in identifying children with intellectual disabilities in India. FGI is an established research method for collecting qualitative data on attitudes, perceptions and practices (Stewart et al. 2007). It was felt that FGIs were needed in order for the CBR project to design its strategy for this village cluster. Focus groups are considered naturalistic because participants are generally free to express themselves as they wish (Krueger & Casey 2009). A secondary advantage of this method is that it can create awareness in the community about a project, develop rapport among various stockholders and help the project team to understand the community and the resources available. This ‘triangulation’ of data collection through surveys helps to fill the gap of inaccurate data obtained through district welfare offices; it also helps to validate the findings of FGI regarding the prevalence of intellectual disabilities in tribal communities.
Objectives and Aims The objectives of the study were to identify children with intellectual disabilities up to age 18 years in a tribal population using a mixed-method approach. The aims were to (i) identify children with IDs through FGIs in a tribal population in a poorest district of India and (ii) to validate the findings through a cross-sectional survey.
Methods This study was conducted under an Action Aid financed project ‘Rehabilitation of persons with disabilities through community-based intervention in Barwani’ by the Ashagram Trust. AGT called this project ‘CBR’. The project was approved for funding in 2000. All microlevel planning was carried out in first 6 months of the project in 2001. The study began in mid-June 2001.
Sampling The project area comprised 63 villages with a population of 128 690, which was divided into 13 clusters containing 3–7 villages in each. Overall, the population of the Barwani district is 68% tribal and 32% non-tribal (Census, 2001), but this ratio is almost opposite in Barwani block, where tribal groups comprise about 40% of the total population. There were 23 villages with a © 2015 John Wiley & Sons Ltd, 29, 211–219
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tribal population in the project area. Clusters were defined on the basis of homogeneity in the population. The cluster of four villages namely Silawad, Hirachrai, Vedpuri and Chikhliya was called Chikhliya cluster in this project. It was selected for research because it had a 99% tribal population, all living below the poverty line at that time and geographically residing in hill country. Every village was spread throughout 6–9 hamlets (Phalia) over a 5–8 km distance. Another important inclusion criterion was that AGT and other health agencies had never conducted any kind of rehabilitation or health programme in these villages.
Focus Group Interview (FGI) The professional team members prepared a training module comprising focus group discussions, a participatory rural appraisal (PRA) and identification of people with intellectual disabilities, and imparted this training to the nine CBRWs. One of us (RL) along with one CBRW who was from the same community conducted FGIs in all four villages in 13 consecutive days. Both the researcher (RL) and CBRWs approached the Village Head (Sarpunch) of every cluster village in the first round of contacts. The village head is an elected candidate under the Panchayati Raj Act, Madhya Pradesh. During these initial visits, the sarpunches were informed about the project and asked to support the programme. Consent for data collection was obtained on this visit. Every Sarpunch in these villages welcomed the project and provided assurances that they would support it. Meetings with village heads were completed in 1 day. Starting on the second day, FGIs were conducted in the villages. In Chikhliya, Vedpuri and Hiracrai villages, the village heads participated in FGIs and helped to mobilize and recruit people for the discussions. Ideally, we wanted to interview homogenous groups of 8–12 males or females, but this was impossible because, in every village, people of both sexes asked to participate. This was a key learning experience for the team: namely, that in tribal societies role discrimination due to gender was less prevalent than in other non-tribal communities of the district. Females participated in discussions without any apparent restrictions, and male members showed respect for their opinions. While most of the female participants in community meetings were in their 40s, many of the males were in their 20s. Participants talked about the social behaviours of persons identified by them as having intellectual disabilities, defining them in their own language and subsequently talking about their relationship with
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family and community members. Most viewed them as innocent and lovable people who accepted everyone with love and were devoid of deceit or trickery. Specific questions, such as how much care was needed, or what would happen when the parents are gone, were not asked. The team had planned to discuss these issues in the interventional phase of the CBR project and to conduct situational analysis at community levels and to form village-level committees to sustain plans once the project was completed. During these discussions, some expressed the view that those who are severely disabled would require care throughout their lives. Others said ‘God is there’ for them, or that he or she has brother or sister who would take care of them and not allow him or her to suffer. Interviewees expressed sympathy towards people with intellectual disabilities and expected support to be provided within their community; most were unaware of facilities available through government to provide care for people with intellectual disabilities, or thought that only parents, siblings and close relatives have a duty to take care of relatives with intellectual disabilities. Children with intellectual disabilities who had associated conditions such as cerebral palsy, Down’s syndrome, autism and ADHD were not counted separately but were placed in the overall category of intellectual disabilities. The smallest FGI was conducted with five participants and the largest with 17. The FGIs averaged 2–3 h. A total of 30 FGIs were conducted, involving 387 people (284 males and 103 females). On average, two FGIs were conducted each day. In most places (14 groups), the village head introduced the team to the community and gave a brief introduction about the programme. The researcher (RL) then obtained oral and written consent from the participants and began the discussion. He gave an overview of intellectual disabilities using features of intellectual disabilities taken from screening checklist used in survey were such, delay in development, slow reaction, lack of coordination. He described it in lay terms and then asked for their opinions without giving any hint of how such people may be perceived or how they themselves might view them. The researcher also asked the group to describe how persons with intellectual disabilities were cared for in their community and to describe the children known to them who had intellectual disabilities. FGIs were supposed to be audio-taped but this was discontinued after the second day due to device failure and the absence of alternative recording devices. In the 14 FGIs, where the village head participated, refreshment for the group had been arranged as a
courtesy; at other sites, the project team provided tea and snacks. It had not been planned to provide refreshment in the FGIs, but after the village head started the practice the project team decided to maintain it, especially where the village head or community could not arrange it. The funding agency was pleased with this unexpected change in initial plans, as the offer of refreshment during FGIs served to honour local practices and build relationships with community members.
Survey The ‘National Institute for the Mentally Handicapped Developmental Screening Schedule (NIMH-DDS)’ was developed by Madhwan et al. (1988) at the National Institute for the Mentally Handicapped (NIMH) India. The ‘NIMH-DDS’ is used in surveys by community rehabilitation workers. NIMH-DDS is a reliable and valid screening tool that is considered low cost, easy to use and relevant to Indian rural populations (Robertson et al. 2009), although there was no evidence of its use in tribal populations at that time. Sensitivity is 0.79, specificity 0.99 and overall screening accuracy of instrument is 0.98 (Arya 1991). This checklist is specifically designed to identify children up to age of 18 years with intellectual disabilities and has three parts: Schedule 1, applicable to children under age 3; Schedule 2, for 3- to 6-year olds, and Schedule 3, for children age 7 and older. Schedule 1 compares milestones on continuous scales while Schedules 2 and 3 have dichotomous answers (NIMH-DDS attached as Appendix 1). AGT translated this checklist into Hindi. CBRWs were trained on this screening tool (NIMHDDS), and the translated instrument was validated exclusively with five tribal children through CBRWs in another village Bhurakuwan in April and May, 2001 and on 29 children from a mixed population in home setting in another community-based project on mental health in Pati block, and in a camp setting in Sendhawa block of Barwani district. Four CBRWs visited door-todoor in all four villages of the cluster and completed the entire survey in 16 days; this was longer than planned, because of three market days, during which the surveyors found few adults in the visited houses. In a few houses, the CBRWs were asked to return later, as the occupants wanted to check with other people about the survey and decide whether to participate. However, none of the families refused to take part in the survey, which was completed only for children under age 18. © 2015 John Wiley & Sons Ltd, 29, 211–219
Journal of Applied Research in Intellectual Disabilities
Parents were informed that AGT was implementing a 10-year project in their village and would provide comprehensive rehabilitation to all people with disability by involving them, their parents and the community in the process of rehabilitation. Most parents, specifically mothers of more severe children with disability, wanted to talk about the condition of their children, and the data collectors were told not to discuss interventions or guide the discussions for two reasons; first, to save time, and second, to avoid the mistake of offering guidance. The data collectors were required to write reports daily and to discuss their observations with their supervisors. This activity was planned to enhance the observational capacity of CBRWs and to enhance their empathy and sensitivity to the needs of people with intellectual disabilities and their families. Parents were not asked specifically questions such as, what help did they need.
Results The same children with intellectual disabilities were found in both methods of identification. Children up to age 18 who were identified in the process are included in the prevalence estimates. Table 1 (below) shows there was little discrepancy in the data obtained through two different methods. Only three additional children with intellectual disabilities were found in the door-to-door survey than though FGI. Referring to Table 2, the data analysis shows that the tribal population in Barwani block has a 5.57/1000 prevalence of intellectual disabilities, whereas the community-defined (FGI) prevalence of intellectual disabilities was 5.22/1000. v² for males identified through FGI and survey is 0.009 (P = 0.923) and for females is 0.048 (P = 0.826). Thus, no significant difference was found in the number of people identified by FGI versus the Survey. Table 1 Children with intellectual disability identified through FGI and survey
Villages
Population
Children with intellectual disabilities
Silawad Hirachrai Vedpuri Chikhliya Total
3858 1060 1112 2767 8797
21 7 8 13 49
Male
Female
FGI
Survey
FGI
Survey
11 5 3 8 27
12 5 3 8 28
8 2 5 4 19
9 2 5 5 21
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There is no significant difference in age between males and females (v2 = 11.77, P = 0.464). However, there is an inverse correlation (Pearson’s q = 0.566, P = 0.044) between age and intellectual disabilities (Table 2).
Discussion All children identified with intellectual disabilities were further assessed by professionals in intellectual disabilities and were found to be true cases of intellectual disabilities. The data show no significant difference and indeed a close similarity in the prevalence rates of intellectual disabilities, as determined by the two approaches (FGI: 5.22/1000; Survey: 5.57/1000). This demonstrates that FGI provides a close estimate of the survey-defined prevalence of intellectual disabilities. FGI not only provided a close estimation of the number of people with intellectual disabilities in tribal communities, but they also provided common ground to the community to share their concerns about disability. The focus groups appeared to realize the importance of awareness on the intellectual disabilities issue and to see linkages with various government schemes and policies. The researcher and moderator were able to observe the behaviour and dynamics of the groups, showing which of the members were motivated by the issues and capable of taking a leadership role. Group members wanted to talk about pathways to care, existing practices towards people with
Table 2 Age distribution and gender of intellectual disabilities cases identified in the survey
Female
Total N (%)
Prevalence cases per 1000
1 1 4 1 4 2 1 2 2 0 2 1 1 21
2 4 8 5 6 5 6 2 5 1 2 2 1 49
0.22 0.45 0.90 0.56 0.68 0.56 0.68 0.22 0.56 0.11 0.22 0.22 0.11 5.57
Gender Age (years)
Male
2 3 4 5 6 7 8 9 10 11 12 14 18 Total
1 3 4 4 2 3 5 0 3 1 0 1 1 28
(4.1) (8.2) (16.3) (10.2) (12.2) (10.2) (12.2) (4.1) (10.2) (2.0) (4.1) (4.1) (2.0) (100.00)
Statistics v2 = 11.77 P = 0.464 q = 0.566 P = 0.044
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intellectual disabilities people, and about their cultural values, beliefs, myths and misconceptions. Such qualitative data, including attitudes, behaviours and practices in the community and among caretakers, can be collected in focus group discussions and are helpful in designing future community-based interventions. The prevalence of community-defined intellectual disabilities in the tribal population was 5.22/1000, which is higher than the overall prevalence of intellectual disabilities in India, estimates of which range from 2.3/1000 (Kumar et al. 2008) to 2.5/1000 (Srinath & Girimaji 1999). The prevalence of intellectual disabilities is higher among tribal males than females (Survey males: 28/8797 9 1000 = 3.18/1000, females: 21/8797 9 1000 = 2.38/1000). Other studies support these findings of higher prevalence rates of intellectual disabilities among males in India. Nandi et al. (1975) reported the prevalence of intellectual disabilities among males as 7.4 per 1000 and 6.6 per 1000 among females. Mehta et al. (1985) reported the prevalence among males as 4.7 per 1000 and among females as 1.7 per 1000. Other researchers such as Srinath & Girimaji (1999) in India, and Drillien et al. (1966) in Europe, also found higher prevalence rates of intellectual disability (IQ < 70) among males in the poorest communities. The tendency towards a lower prevalence of intellectual disabilities in older children is consistent with a study conducted in a similarly impoverished population in another LAMI country, Nepal (Karkee et al. 2008). Emerson et al. (2012), commenting on the World Bank report of World Bank 2010; noted that over 10% children would die before their fifth birthday in LAMI countries. Children with intellectual disabilities in such countries are also reported as being at higher risk of denial for healthcare services (Emerson et al. 2008), which could partly explain the lower prevalence of intellectual disabilities among older children. Regarding the advantage of a mixed-method approach, FGI identified two fewer people with intellectual disabilities in Silawad village than the doorto-door survey because one male whom the family considered intellectual disabled, but community did not perceive him intellectual disabled because he was successfully integrated. He was married and living with his wife. Another girl could not be counted because she was
Journal of Applied Research in Intellectual Disabilities 2016, 29, 211–219
Identifying Children with Intellectual Disabilities in the Tribal Population of Barwani District in State of Madhya Pradesh, India Ram Lakhan and Anthony R. Mawson School of Health Sciences, College of Public Service, Jackson State University, Jackson, MS, USA
Accepted for publication 27 September 2013
Background Low-and middle-income countries (LAMI) lack an integrated and systematic approach to identify people with intellectual disabilities. Screening surveys are considered resource-intensive; therefore, alternative approaches are needed. This study attempted to identify children up to age 18 years with intellectual disabilities through a mixed-method approach involving focus group interviews (FGIs) and door-to-door surveys. Materials and Methods Focus groups were conducted with the assistance and involvement of local leaders in four villages of Barwani district of Madhya Pradesh with a 99% tribal population in all four villages. A formal survey of the community was then conducted to determine the prevalence of intellectual disabilities based on a standardized screening instrument (NIMH-DDS). Results Thirty focus group interviews were conducted involving 387 participants (males 284, females 103) over a period of 13 days. The entire adult population (N = 8797) was then surveyed for intellectual disabilities
Introduction Intellectual disability is a condition that originates before age 18 and is characterized by significant limitations in intellectual functioning and adaptive behaviour, as expressed in conceptual, social and practical skills (Schalock & Luckasson 2004). The prevalence of intellectual disability is estimated at 1–4% worldwide (Mercadante et al. 2009). There are estimates of the number of people in India with intellectual disabilities, but the nature of the disability as well as associated conditions and differing diagnostic criteria used in previous studies make it difficult to estimate the prevalence of intellectual disabilities throughout the nation. A review of epidemiological studies (Girimaji & © 2015 John Wiley & Sons Ltd
using a standardized screening instrument. The data revealed a close similarity in the prevalence rates of intellectual disabilities, as determined by the two approaches (Focus Group Interviews, 5.22/1000 versus Survey, 5.57/1000). Conclusion A qualitative method using FGIs successfully identified people with intellectual disabilities in an economically deprived tribal area, showing that a community-based approach provides a close estimate of intellectual disabilities based on a formal survey using standard diagnostic criteria. These data suggest that FGI, along with other qualitative data, could be helpful in designing and in serving as an entree for communitybased interventions. Keywords: community-based rehabilitation, intellectual disabilities, low-and middle-income countries, mixedmethod research, prevalence
Srinath 2010) concluded that the point prevalence of intellectual disabilities ranges from 1 to 32 per 1,000, depending on the case definition, methodology and population selected. Epidemiological studies using ICD10 criteria of intellectual disabilities have shown huge variation in the prevalence of intellectual disabilities in India, from 3.4 per 1000 (IQ < 50) for persons with intellectual disabilities in a rural community (Narayanan 1981) to as high as 34.2 per 1000 for persons with severe intellectual disability (Belmont 1984). Population-based epidemiological studies of intellectual disabilities have not been carried out in India (Maulik & Harbour 2010). High-income countries have integrated systems of identifying children with intellectual disabilities in their 10.1111/jar.12171
212 Journal of Applied Research in Intellectual Disabilities
health, education and social care system (Robertson et al. 2012a and 2012b), which allows agencies to address the needs of identified high-risk children (Sonnander 2000). However, such a system is lacking in low-and middle-income countries (LAMI). There is need for an integrated system to identify children with disability. Robertson et al. (2012a,b) reported that several studies in LAMI countries have applied different approaches to identify high-risk children. Most of them have used screening tools, which are developed and standardized in western population. Western tests translated in local languages are common for identifying children with risk of intellectual disabilities in LAMI countries, but mere translation of western tests into the local language may not provide the most appropriate results (Gladstone et al. 2008; Robertson et al. 2012a,b). A screening test should have reliability and validity in terms of sensitivity, specificity and needs to be standardized for the population in which it is being used (Chopra et al. 1999; Glascoe 2007). Cross-sectional screening surveys are carried out in many LAMI countries to identify children at high risk of intellectual disabilities. Maulik & Darmstadt (2007) reported in their systematic review that Ten Questions (TQ) screening was commonly used in LAMI countries. TQ is reportedly a valid, reliable and sensitive screening tool for 2–9 years aged children in many countries, including India. It was found 100% sensitive in India, but its positive predictive value (PPV) for males (61%) was higher than for girls (31%). (TQ is also claimed to be the cost-effective, rapid screening tool for use by community workers (Singhi et al. 2007)). Overall, such surveys are costly, time-consuming and perform poorly in identifying people with intellectual disabilities (Kuruvilla & Joseph 1999; Gona et al. 2006). Alternative approaches, key informant methods (Thorburn et al. 1991), rapid rural appraisal (RRA) (Kuruvilla & Joseph 1999) and participatory rural appraisal (PRA) (Gona et al. 2006) were also used in LAMI countries. RRA and PRA both involve the community in identifying children with intellectual disabilities and have been found useful in creating community awareness. The PRA method was less expensive compared to house-to-house surveys, while RRA could not identify children younger than 2 years of age and those under age 5 with a mild level of disability. To design appropriate interventional programmes and strategies, it is important for agencies serving particular communities to have an approximate idea of the number of people affected with intellectual disabilities. Ashagram Trust (AGT) is a non-government
organization that has been focusing on major mental illness and leprosy in Barwani and adjoining districts. This organization planned to provide rehabilitation services to people with intellectual disabilities under financial support from Action Aid international in 63 villages of Barwani block, using a community-based rehabilitation (CBR) approach. A long-term CBR project for 10 years sponsored by this organization in 2000 aimed to provide comprehensive intervention to all people with disability in the community. Action Aid allowed AGT to conduct a cross-sectional study to identify children with intellectual disabilities in their consultations. The initial phase of the project was to identify people with disability, as government data on disability in the community are inaccurate; this was the biggest challenge faced by the team. The idea of screening children for intellectual disabilities by administering standard tests to every child was considered too expensive and time-consuming. As we were initiating a community-based programme, the team wanted to involve the community at the start of the project. According to the Department for International Development (DFID), Barwani – a tribal district of Madhya Pradesh state – is among the 100 poorest districts in India (RTF 2003). At the time of the study, over half (53%) of the population of this district lived below the poverty line and most villages lacked all-season roads, electricity, safe drinking water and health facilities (Chatterjee et al. 2003). Only 4.3% have access to a toilet, 8.3% to safe piped drinking water. Approximately 62% girls marry before the age of 18. The tribal population is severely deprived of health care, education and government programmes (JSA 2010). Currently, the community-based approach to providing rehabilitation services to individuals with disability is popular and is being followed in 90 countries (Robertson et al. 2012a,b). AGT believed that the CBR model was more useful due to its cultural sensitivity (Lightfoot 2004), accessibility and cost-effectiveness. Following the principles of CBR, the AGT project team wanted to develop an approach to identify people with intellectual disabilities. The team therefore decided to use a mixed-method research approach. A study conducted in Pakistan highlighted the importance of a mixedmethod approach in community-based interventions for persons with intellectual disabilities in low- and middleincome countries (Mirza et al. 2009). Mixed-method research is considered superior to single-method research due to its pluralism or ability to provide alternate perspectives on issues (Johnson & Onwuegbuzie 2004). © 2015 John Wiley & Sons Ltd, 29, 211–219
Journal of Applied Research in Intellectual Disabilities
Our team chose to conduct focus group interviews (FGI) in selected communities and then door-to-door surveys as qualitative and quantitative methods, respectively. Kuruvilla & Joseph (1999) also suggested using a screening tool in door-to-door surveys with RRA in identifying children with intellectual disabilities in India. FGI is an established research method for collecting qualitative data on attitudes, perceptions and practices (Stewart et al. 2007). It was felt that FGIs were needed in order for the CBR project to design its strategy for this village cluster. Focus groups are considered naturalistic because participants are generally free to express themselves as they wish (Krueger & Casey 2009). A secondary advantage of this method is that it can create awareness in the community about a project, develop rapport among various stockholders and help the project team to understand the community and the resources available. This ‘triangulation’ of data collection through surveys helps to fill the gap of inaccurate data obtained through district welfare offices; it also helps to validate the findings of FGI regarding the prevalence of intellectual disabilities in tribal communities.
Objectives and Aims The objectives of the study were to identify children with intellectual disabilities up to age 18 years in a tribal population using a mixed-method approach. The aims were to (i) identify children with IDs through FGIs in a tribal population in a poorest district of India and (ii) to validate the findings through a cross-sectional survey.
Methods This study was conducted under an Action Aid financed project ‘Rehabilitation of persons with disabilities through community-based intervention in Barwani’ by the Ashagram Trust. AGT called this project ‘CBR’. The project was approved for funding in 2000. All microlevel planning was carried out in first 6 months of the project in 2001. The study began in mid-June 2001.
Sampling The project area comprised 63 villages with a population of 128 690, which was divided into 13 clusters containing 3–7 villages in each. Overall, the population of the Barwani district is 68% tribal and 32% non-tribal (Census, 2001), but this ratio is almost opposite in Barwani block, where tribal groups comprise about 40% of the total population. There were 23 villages with a © 2015 John Wiley & Sons Ltd, 29, 211–219
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tribal population in the project area. Clusters were defined on the basis of homogeneity in the population. The cluster of four villages namely Silawad, Hirachrai, Vedpuri and Chikhliya was called Chikhliya cluster in this project. It was selected for research because it had a 99% tribal population, all living below the poverty line at that time and geographically residing in hill country. Every village was spread throughout 6–9 hamlets (Phalia) over a 5–8 km distance. Another important inclusion criterion was that AGT and other health agencies had never conducted any kind of rehabilitation or health programme in these villages.
Focus Group Interview (FGI) The professional team members prepared a training module comprising focus group discussions, a participatory rural appraisal (PRA) and identification of people with intellectual disabilities, and imparted this training to the nine CBRWs. One of us (RL) along with one CBRW who was from the same community conducted FGIs in all four villages in 13 consecutive days. Both the researcher (RL) and CBRWs approached the Village Head (Sarpunch) of every cluster village in the first round of contacts. The village head is an elected candidate under the Panchayati Raj Act, Madhya Pradesh. During these initial visits, the sarpunches were informed about the project and asked to support the programme. Consent for data collection was obtained on this visit. Every Sarpunch in these villages welcomed the project and provided assurances that they would support it. Meetings with village heads were completed in 1 day. Starting on the second day, FGIs were conducted in the villages. In Chikhliya, Vedpuri and Hiracrai villages, the village heads participated in FGIs and helped to mobilize and recruit people for the discussions. Ideally, we wanted to interview homogenous groups of 8–12 males or females, but this was impossible because, in every village, people of both sexes asked to participate. This was a key learning experience for the team: namely, that in tribal societies role discrimination due to gender was less prevalent than in other non-tribal communities of the district. Females participated in discussions without any apparent restrictions, and male members showed respect for their opinions. While most of the female participants in community meetings were in their 40s, many of the males were in their 20s. Participants talked about the social behaviours of persons identified by them as having intellectual disabilities, defining them in their own language and subsequently talking about their relationship with
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family and community members. Most viewed them as innocent and lovable people who accepted everyone with love and were devoid of deceit or trickery. Specific questions, such as how much care was needed, or what would happen when the parents are gone, were not asked. The team had planned to discuss these issues in the interventional phase of the CBR project and to conduct situational analysis at community levels and to form village-level committees to sustain plans once the project was completed. During these discussions, some expressed the view that those who are severely disabled would require care throughout their lives. Others said ‘God is there’ for them, or that he or she has brother or sister who would take care of them and not allow him or her to suffer. Interviewees expressed sympathy towards people with intellectual disabilities and expected support to be provided within their community; most were unaware of facilities available through government to provide care for people with intellectual disabilities, or thought that only parents, siblings and close relatives have a duty to take care of relatives with intellectual disabilities. Children with intellectual disabilities who had associated conditions such as cerebral palsy, Down’s syndrome, autism and ADHD were not counted separately but were placed in the overall category of intellectual disabilities. The smallest FGI was conducted with five participants and the largest with 17. The FGIs averaged 2–3 h. A total of 30 FGIs were conducted, involving 387 people (284 males and 103 females). On average, two FGIs were conducted each day. In most places (14 groups), the village head introduced the team to the community and gave a brief introduction about the programme. The researcher (RL) then obtained oral and written consent from the participants and began the discussion. He gave an overview of intellectual disabilities using features of intellectual disabilities taken from screening checklist used in survey were such, delay in development, slow reaction, lack of coordination. He described it in lay terms and then asked for their opinions without giving any hint of how such people may be perceived or how they themselves might view them. The researcher also asked the group to describe how persons with intellectual disabilities were cared for in their community and to describe the children known to them who had intellectual disabilities. FGIs were supposed to be audio-taped but this was discontinued after the second day due to device failure and the absence of alternative recording devices. In the 14 FGIs, where the village head participated, refreshment for the group had been arranged as a
courtesy; at other sites, the project team provided tea and snacks. It had not been planned to provide refreshment in the FGIs, but after the village head started the practice the project team decided to maintain it, especially where the village head or community could not arrange it. The funding agency was pleased with this unexpected change in initial plans, as the offer of refreshment during FGIs served to honour local practices and build relationships with community members.
Survey The ‘National Institute for the Mentally Handicapped Developmental Screening Schedule (NIMH-DDS)’ was developed by Madhwan et al. (1988) at the National Institute for the Mentally Handicapped (NIMH) India. The ‘NIMH-DDS’ is used in surveys by community rehabilitation workers. NIMH-DDS is a reliable and valid screening tool that is considered low cost, easy to use and relevant to Indian rural populations (Robertson et al. 2009), although there was no evidence of its use in tribal populations at that time. Sensitivity is 0.79, specificity 0.99 and overall screening accuracy of instrument is 0.98 (Arya 1991). This checklist is specifically designed to identify children up to age of 18 years with intellectual disabilities and has three parts: Schedule 1, applicable to children under age 3; Schedule 2, for 3- to 6-year olds, and Schedule 3, for children age 7 and older. Schedule 1 compares milestones on continuous scales while Schedules 2 and 3 have dichotomous answers (NIMH-DDS attached as Appendix 1). AGT translated this checklist into Hindi. CBRWs were trained on this screening tool (NIMHDDS), and the translated instrument was validated exclusively with five tribal children through CBRWs in another village Bhurakuwan in April and May, 2001 and on 29 children from a mixed population in home setting in another community-based project on mental health in Pati block, and in a camp setting in Sendhawa block of Barwani district. Four CBRWs visited door-todoor in all four villages of the cluster and completed the entire survey in 16 days; this was longer than planned, because of three market days, during which the surveyors found few adults in the visited houses. In a few houses, the CBRWs were asked to return later, as the occupants wanted to check with other people about the survey and decide whether to participate. However, none of the families refused to take part in the survey, which was completed only for children under age 18. © 2015 John Wiley & Sons Ltd, 29, 211–219
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Parents were informed that AGT was implementing a 10-year project in their village and would provide comprehensive rehabilitation to all people with disability by involving them, their parents and the community in the process of rehabilitation. Most parents, specifically mothers of more severe children with disability, wanted to talk about the condition of their children, and the data collectors were told not to discuss interventions or guide the discussions for two reasons; first, to save time, and second, to avoid the mistake of offering guidance. The data collectors were required to write reports daily and to discuss their observations with their supervisors. This activity was planned to enhance the observational capacity of CBRWs and to enhance their empathy and sensitivity to the needs of people with intellectual disabilities and their families. Parents were not asked specifically questions such as, what help did they need.
Results The same children with intellectual disabilities were found in both methods of identification. Children up to age 18 who were identified in the process are included in the prevalence estimates. Table 1 (below) shows there was little discrepancy in the data obtained through two different methods. Only three additional children with intellectual disabilities were found in the door-to-door survey than though FGI. Referring to Table 2, the data analysis shows that the tribal population in Barwani block has a 5.57/1000 prevalence of intellectual disabilities, whereas the community-defined (FGI) prevalence of intellectual disabilities was 5.22/1000. v² for males identified through FGI and survey is 0.009 (P = 0.923) and for females is 0.048 (P = 0.826). Thus, no significant difference was found in the number of people identified by FGI versus the Survey. Table 1 Children with intellectual disability identified through FGI and survey
Villages
Population
Children with intellectual disabilities
Silawad Hirachrai Vedpuri Chikhliya Total
3858 1060 1112 2767 8797
21 7 8 13 49
Male
Female
FGI
Survey
FGI
Survey
11 5 3 8 27
12 5 3 8 28
8 2 5 4 19
9 2 5 5 21
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There is no significant difference in age between males and females (v2 = 11.77, P = 0.464). However, there is an inverse correlation (Pearson’s q = 0.566, P = 0.044) between age and intellectual disabilities (Table 2).
Discussion All children identified with intellectual disabilities were further assessed by professionals in intellectual disabilities and were found to be true cases of intellectual disabilities. The data show no significant difference and indeed a close similarity in the prevalence rates of intellectual disabilities, as determined by the two approaches (FGI: 5.22/1000; Survey: 5.57/1000). This demonstrates that FGI provides a close estimate of the survey-defined prevalence of intellectual disabilities. FGI not only provided a close estimation of the number of people with intellectual disabilities in tribal communities, but they also provided common ground to the community to share their concerns about disability. The focus groups appeared to realize the importance of awareness on the intellectual disabilities issue and to see linkages with various government schemes and policies. The researcher and moderator were able to observe the behaviour and dynamics of the groups, showing which of the members were motivated by the issues and capable of taking a leadership role. Group members wanted to talk about pathways to care, existing practices towards people with
Table 2 Age distribution and gender of intellectual disabilities cases identified in the survey
Female
Total N (%)
Prevalence cases per 1000
1 1 4 1 4 2 1 2 2 0 2 1 1 21
2 4 8 5 6 5 6 2 5 1 2 2 1 49
0.22 0.45 0.90 0.56 0.68 0.56 0.68 0.22 0.56 0.11 0.22 0.22 0.11 5.57
Gender Age (years)
Male
2 3 4 5 6 7 8 9 10 11 12 14 18 Total
1 3 4 4 2 3 5 0 3 1 0 1 1 28
(4.1) (8.2) (16.3) (10.2) (12.2) (10.2) (12.2) (4.1) (10.2) (2.0) (4.1) (4.1) (2.0) (100.00)
Statistics v2 = 11.77 P = 0.464 q = 0.566 P = 0.044
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intellectual disabilities people, and about their cultural values, beliefs, myths and misconceptions. Such qualitative data, including attitudes, behaviours and practices in the community and among caretakers, can be collected in focus group discussions and are helpful in designing future community-based interventions. The prevalence of community-defined intellectual disabilities in the tribal population was 5.22/1000, which is higher than the overall prevalence of intellectual disabilities in India, estimates of which range from 2.3/1000 (Kumar et al. 2008) to 2.5/1000 (Srinath & Girimaji 1999). The prevalence of intellectual disabilities is higher among tribal males than females (Survey males: 28/8797 9 1000 = 3.18/1000, females: 21/8797 9 1000 = 2.38/1000). Other studies support these findings of higher prevalence rates of intellectual disabilities among males in India. Nandi et al. (1975) reported the prevalence of intellectual disabilities among males as 7.4 per 1000 and 6.6 per 1000 among females. Mehta et al. (1985) reported the prevalence among males as 4.7 per 1000 and among females as 1.7 per 1000. Other researchers such as Srinath & Girimaji (1999) in India, and Drillien et al. (1966) in Europe, also found higher prevalence rates of intellectual disability (IQ < 70) among males in the poorest communities. The tendency towards a lower prevalence of intellectual disabilities in older children is consistent with a study conducted in a similarly impoverished population in another LAMI country, Nepal (Karkee et al. 2008). Emerson et al. (2012), commenting on the World Bank report of World Bank 2010; noted that over 10% children would die before their fifth birthday in LAMI countries. Children with intellectual disabilities in such countries are also reported as being at higher risk of denial for healthcare services (Emerson et al. 2008), which could partly explain the lower prevalence of intellectual disabilities among older children. Regarding the advantage of a mixed-method approach, FGI identified two fewer people with intellectual disabilities in Silawad village than the doorto-door survey because one male whom the family considered intellectual disabled, but community did not perceive him intellectual disabled because he was successfully integrated. He was married and living with his wife. Another girl could not be counted because she was
