Intellectual Disability In India Research Articles

Prevalence of dental caries among children and adolescents with intellectual disability in India: A scoping review.

Children with intellectual and developmental disabilities are at a higher risk of developing dental caries. Few scoping reviews have been conducted in India to understand their issues. We aimed to summarise the distribution and risk factors of dental caries among children and adolescents with intellectual disabilities in India. A scoping review was conducted based on the Arksey O Malley framework. Quality assessment of studies, descriptive and thematic analyses were also conducted. We charted, collated, and summarised from four databases. Thirty-one studies met the study criteria consisting of children and adolescents with intellectual disabilities. Median caries prevalence was 70%, decayed missing and fIlled permenant teeth (DMFT) was 2.4, decayed missing and filled decidous teeth (dmft) was 2.36, and DMFS was 3.7. Major determinants were the severity of disability, socioeconomic status and parents' education. Oral care and dental visits were inadequate. Further exploration is required to improve access and reduce caries experience and prevalence among children with intellectual and developmental disabilities in India.

Experiences of family carers in providing care to children with intellectual disabilities in India: A qualitative evidence synthesis.

India has a significant prevalence of people with intellectual disabilities. Despite their higher prevalence, they receive poor support. Therefore, this review aims to explore the experiences of family carers in providing care for children with intellectual disabilities in India. A qualitative evidence synthesis was undertaken, searching databases such as MEDLINE, CINAHL, Web of Science, and PsycInfo up to October 2023. Grey literature was also searched for unpublished studies, with two reviewers assessing methodological quality. Eleven eligible studies, mostly qualitative in design, were included in the review. The data synthesis followed a thematic approach. The synthesis found five themes representing family carers' experiences and perspectives. These were 'resilience and acceptance', 'parental response', 'care dynamic', 'preparing for transition to adulthood' and 'parental advocacy'. Family carers hold diverse views, while almost all consider providing care complex and challenging, with few positive experiences.

Parental Involvement in Educating Children with Intellectual Disabilities in India During the COVID-19 Pandemic: A Comprehensive Review

The COVID-19 pandemic has drastically altered the educational landscape globally, with a particularly profound impact on children with intellectual disabilities (ID). In India, where educational infrastructure and support systems for children with ID are already strained, the pandemic exacerbated existing challenges. In India, the sudden shift to remote learning has placed a significant burden on parents, who have had to take on new roles as educators. Parents have had to step into roles traditionally held by educators, therapists, and support staff, making their involvement crucial. This research article explores the multifaceted role parents played in the education of children with intellectual disabilities during the COVID-19 pandemic in India, highlighting both the obstacles faced and the resilience demonstrated by families. This article also emphasized the role of parents in educating children with intellectual disabilities during the pandemic, through case studies and community efforts, highlighting both challenges and innovative solutions.

Exploring the Influence of Parental Literacy Status on the Implementation of Dance Movement Therapy for Motor Skill Development in Children with Intellectual Disability in India

This paper focuses on examining the influence of parental literacy status in the implementation of Dance Movement Therapy (DMT) for the development of motor skills in children with intellectual disabilities in India. The study aims to explore the potential impact of parental literacy on engagement, participation, and outcomes of DMT interventions, ultimately informing strategies to optimize therapy effectiveness. The research incorporates the use of the Behavioral Assessment Scales for Indian Children with Mental Retardation (Basic-MR, Part A) to assess the impact of parental literacy on the outcomes of DMT interventions.
 Literacy status of parents, particularly in low- and middle-income countries like India, can significantly affect various aspects of a child's development, including their access to education, healthcare, and therapies. However, there is limited research exploring the specific role of parental literacy in the context of DMT interventions for children with intellectual disabilities in India.
 This study adopts a mixed-methods research design, combining quantitative measurements and qualitative insights. A sample of children with intellectual disabilities, aged between 7 and 15 years, will be recruited from special education schools from Odisha, India. The DMT intervention will be carried out over a designated period, with trained dance movement therapists tailoring the sessions to meet the individual needs and abilities of the children. The impact of the intervention will be evaluated using the Behavioral Assessment Scales for Indian Children with Mental Retardation (Basic-MR, Part A), which provides a comprehensive assessment of motor skills including locomotor and object control skills. Quantitative data, including pre- and post-intervention assessments, will be analyzed to determine the influence of parental literacy on motor skill development outcomes.
 This study aims to enhance our understanding of how parental literacy status influences the implementation of DMT and motor skill development in children with intellectual disabilities in India. By recognizing the impact of parental literacy and addressing potential challenges, the study aims to optimize the effectiveness of DMT interventions for children with intellectual disabilities. The findings will have practical implications for therapists, educators, policymakers, and other stakeholders involved in culturally sensitive intervention programs, promoting comprehensive motor skill development in children with intellectual disabilities in India.

A community developed conceptual model for reducing long-term health problems in children with intellectual disability in India.

Children with intellectual disability (ID) have a higher risk of long-term health problems in adulthood. India has the highest prevalence of ID of any country with 1.6 million under-five children living with the condition. Despite this, compared with other children, this neglected population is excluded from mainstream disease prevention and health promotion programmes. Our objective was to develop an evidence-based conceptual framework for a needs-based inclusive intervention to reduce the risk of communicable and non-communicable diseases among children with ID in India. From April through to July 2020 we undertook community engagement and involvement activities in ten States in India using a community-based participatory approach, guided by the bio-psycho-social model. We adapted the five steps recommended for the design and evaluation of a public participation process for the health sector. Seventy stakeholders from ten States contributed to the project: 44 parents and 26 professionals who work with people with ID. We mapped the outputs from two rounds of stakeholder consultations with evidence from systematic reviews to develop a conceptual framework that underpins an approach to develop a cross-sectoral family-centred needs-based inclusive intervention to improve health outcomes for children with ID. A working Theory of Change model delineates a pathway that reflected the priorities of the target population. We discussed the models during a third round of consultations to identify limitations, relevance of the concepts, structural and social barriers that could influence acceptability and adherence, success criteria, and integration with existing health system and service delivery. There are currently no health promotion programmes focusing on children with ID in India despite the population being at a higher risk of developing comorbid health problems. Therefore, an urgent next step is to test the conceptual model to determine acceptance and effectiveness within the context of socio-economic challenges faced by the children and their families in the country.

Age- and Gender-Specific Prevalence of Intellectually Disabled Population in India.

Intellectual disability in India is substantially under-reported, especially amongst females. This study quantifies the prevalence and gender bias in household reporting of intellectual disability by estimating the age-and-gender specific prevalence of the intellectually disabled by education, Socio-Demographic Index (SDI) score, place of residence, (rural/urban) and income of household head. We estimated prevalence (per 100,000) at 179 (95% CI: 173 to 185) for males and 120 (95% CI: 115 to 125) for females. Gender differences declined sharply with increased education, was higher for lower ages and low income and varied little by state development. Under-identification and under-reporting due to stigma are two plausible reasons for the gender differences in prevalence that increase with age.

Reproductive rights of women with intellectual disability in India.

The reproductive rights of women with intellectual disability (WID) are a matter of concern for all stakeholders, including the woman herself, caregivers, guardians and her treating physicians. The judicial system often calls upon psychiatrists to opine regarding the "capacity to consent" of a WID to procedures such as medical termination of pregnancy and permanent sterilisation. Apart from physical and obstetric examinations, assessment of mental status and intelligence quotient (IQ) are also carried out to facilitate an understanding of the above issue. The Rights of Persons with Disabilities Act, 2016, (RPwD) and the Mental Healthcare Act, 2017, elucidate what constitutes free and informed consent as well as how to assess capacity. The assessment process of "capacity to consent" to reproductive system procedures among WID is important and can guide clinicians. Before assessing capacity, the treating physicians should educate a WID with appropriate information on the proposed procedure, its risks and benefits through various means of communication and then evaluate the "capacity to consent" to the procedure. This article summarises the provisions of the existing legislations on the reproductive rights of WID and puts forward guidance for clinicians on how to approach the issue.

Sexual health and safety of adolescents with intellectual disability: Challenges and concerns among special educators in India.

Sexual health education among adolescents with intellectual disabilities is an area of concern among parents and educators. Special educators play a vital role in teaching sexual health and safety to their students with disabilities. The present study explores special educators' concerns in teaching sexual health among adolescents with intellectual disabilities. The participants included 35 special educators working with adolescents with intellectual disabilities in India. Summative content analysis of the data collected using a semi-structured interview schedule highlights the neglect of the issues related to sexual health among adolescents with disabilities. Special educators reported the challenges in providing sexual health education. Teachers lacked skills in imparting sexual health education. Developmentally and culturally appropriate sexual health education can help adolescents with a disability learn healthy life skills. The paper emphasizes the need for professional support and training among special educators on sexual health education.

Vocational training for livelihood and rehabilitation of persons with intellectual disabilities

Purpose Rehabilitation facilities available for persons with intellectual disabilities are low in India. The purpose of this paper is to illustrate an action research programme undertaken in Thrissur district, Kerala, India, to provide institution-based vocational training to selected beneficiaries of BUDS rehabilitation institutions. Design/methodology/approach A total of 40 students were selected for the training programme. Different vocational activities were included according to criteria such as the abilities of students, sustainability and therapeutic value. Findings The results of data analysis showed that fraternity, engagement and collectivism were the themes that emerged from the conversations with students, teachers and parents. Some students showed marked improvements in various areas of functioning. Research limitations/implications Larger replication studies could provide more evidence for wider implementation. Practical implications There is a possibility of scaling up the model at the state or national level. Social implications This model could be adopted for providing better services to persons with intellectual disabilities in similar low- and middle-income settings. Originality/value To the best of the author’s knowledge, this paper is the first known attempt at examining the utility of vocational activity training as therapeutic intervention for persons with intellectual disabilities in India.

Nuances of the unique and evolving conceptualisation of intellectual disability in India: A study of the changing artistic parlance of representing intellectually disabled people in mainstream Hindi cinema

AbstractOwing to the different models of disablement in different religions and cultures around the world, social and aesthetic representations of intellectually disabled people are diverse in various societies. Disability is perceived in a different way in India than in the West. There are very few studies on the complex role of Indian mainstream Hindi cinema in the representation of intellectual and developmental disabilities in India. This paper explores the potential of shifting representations of intellectual and developmental disability in the late twentieth and early twenty‐first century Bollywood films in the context of multiple aesthetic challenges they pose. The shift in screen image of intellectual impairment is strongly related to the shifting and ambiguous sociocultural model of personhood in India. In earlier Indian Hindi films, characters with intellectual disabilities were depicted in terms of good/bad moralistic labels, compromised body image, leading to aesthetic undesirability. In later Hindi films, they were instead represented as enduring human beings. In short, in earlier Hindi films, there was a discriminatory hegemonic bias in the depiction of intellectually disabled characters, in contrast to that in later Hindi films, where they were depicted in richly diverse perspectives. The changing artistic parlance becomes even more interesting in the context of major developments in Indian governmental policies and rights for the disabled in the last two decades. Thus, the paper highlights that contemporary Hindi films urge the audience to consider intellectual and developmental disability as a multilayered issue and rather than merely as a disease.

Roles and Responsibility of the National Institute for the Empowerment of person with Intellectual Disabilities in India: A Study

The Indian Government supports various programmes to empower PWD. Therefore, the government pays particular attention to people with intellectual disabilities, including special education, career opportunities, etc. One of the main organisations initiated by the Indian Government for People with Mental Disabilities is the National Institute for the Empowerment of Persons with Intellectual Disabilities (NIEPID). This organisation provides assistance for the community, rehabilitation, education, career development, medical care, etc. This paper made an attempt to study the functions and duties of the PID in NIEPID. The NIEPID plays a key role in special education classes, research development, advanced technology, etc. Their essential duties are to help them learn the special education system and provide the PID with activities for skills development.

Prevalence of intellectual disability in India: A meta-analysis.

BACKGROUNDBurden due to intellectual disability (ID) is only third to the depressive disorders and anxiety disorders in India. This national burden significantly contributes to the global burden of ID and hence one has to think globally and act locally to reduce this burden. At its best the collective prevalence of ID is in the form of narrative reviews. There is an urgent need to document the summary prevalence of ID to enhance further policymaking, national programs and resource allocation.AIMTo establish the summary prevalence of ID during the past 60 years in India. METHODSTwo researchers independently and electronically searched PubMed, Scopus, and the Cochrane library from January 1961 to December 2020 using appropriate search terms. Two other investigators extracted the study design, setting, participant characteristics, and measures used to identify ID. Two other researchers appraised the quality of the studies using the Joanna Briggs Institute critical appraisal format for Prevalence Studies. Funnel plot and Egger’s regression test were used to ascertain the publication and small study effect on the prevalence. To evaluate the summary prevalence of ID, we used the random effects model with arcsine square-root transformation. Heterogeneity of I2 ≥ 50% was considered substantial and we determined the heterogeneity with meta-regression. The analyses were performed using STATA (version 16). RESULTSNineteen studies were included in the meta-analysis. There was publication bias; the trim-and-fill method was used to further ascertain bias. Concerns with control of confounders and the reliable measure of outcome were noted in the critical appraisal. The summary prevalence of ID was 2% [(95%CI: 2%, 3%); I2 = 98%] and the adjusted summary prevalence was 1.4%. Meta-regression demonstrated that age of the participants was statistically significantly related to the prevalence; other factors did not influence the prevalence or heterogeneity.CONCLUSIONThe summary prevalence of ID in India was established to be 2% taking into consideration the individual prevalence studies over the last six decades. This knowledge should improve the existing disability and mental health policies, national programs and service delivery to reduce the national and global burden associated with ID.

Prevalence of Dental Caries and Gingivitis among children with Intellectual Disability in India.

ABSTRACTIntroduction:Down syndrome (DS) is one of the most common genetic abnormalities, with highly variable prognosis. Oral diseases such as periodontal disease, malocclusion, mouth breathing, macroglossia, delayed teeth eruption, missing and malformed teeth, microdontia, diastema, and bruxism are common among individuals with DS. Hence, a study was planned to assess the caries experience and periodontal status of subjects with DS.Materials and Methods:A cross-sectional study was conducted among 92 DS patients in two different centers in Chennai and Pondicherry to assess the prevalence of dental caries and gingivitis, using dft/DMFT and Modified Loe and Silness Gingival Index, respectively. The subjects were examined by three trained and calibrated examiners using a pre-tested and pre-validated proforma. Data were entered in a Microsoft Excel spreadsheet and analyzed using SPSS software (version 20). Descriptive statistics were used. A value of P < 0.05 was considered significant.Results:The mean DMFT was low among male (1.47 ± 2.31) when compared to female (2.57 ± 4.57) which was found to be significant statistically. The gingival score was low among male (.85 ± 0.36) when compared to female (1 ± 1.00) which was found to be significant statistically. The mean dft among male and female were (.49 ± 1.37;.43 ± 1.09), respectively, which was found to be not significant statistically.Conclusion:Dental caries and gingival diseases are higher among children with DS. Dental caries was found both in primary dentition and permanent dentition.

Hybrid Supported Employment Approach for Persons with Intellectual Disabilities in India: Evidence Based Case Studies.

Studies have reported that persons with developmental disabilities have the lowest rate of labor force participation, relative to other disabilities due to various factors. This paper presents two cases studies of persons with ID who were successfully provided a hybrid supported employment approach of ‘train and place model’ and ‘place and train model’ by the Psychiatric Rehabilitation Services (PRS) team. Conducted a retrospective file review highlighting the process of supported employment approach adapted for persons with ID. The ethical approval was obtained from the Institute Ethical Committee. The hybrid supported employment approach focuses on enhancing client’s vocational potential and skills, prepare for job ready, find a suitable job placement. Further, the approach helped in improving the sense of independence self-esteem and quality of life of the clients. A hybrid supported employment approach could be an effective method in aiding persons with developmental disabilities in India seek, get, and keep jobs; it will also help them deal with unique challenges they face in the workplace as well as loss of or gaps in employment. Involvement of families in the intervention will help minimize negative expressed emotions and distress.

The Role of Social Support in Participation Perspectives of Caregivers of Children with Intellectual Disabilities in India and South Africa.

Caregivers are an intrinsic component of the environment of children with intellectual disabilities. However, caregivers’ capacity to support children’s participation may be linked to the social support that they, as caregivers, receive. Social support may increase participation, educational, psychological, medical and financial opportunities. However, there is a lack of information on social support in middle-income countries. The current study described and compared the social support of caregivers of children with intellectual disabilities by using the Family Support Survey (FSS) in India and South Africa. The different types of social support were subsequently considered in relation to participation, using the Children’s Assessment of Participation and Enjoyment (CAPE). One hundred caregiver–child dyads from India and 123 from South Africa participated in this study. The data were analysed using non-parametric measures. Indian caregivers reported greater availability of more helpful support than did the South African caregivers. Social support was associated with children’s participation diversity (India) and intensity (South Africa). The child-/caregiver-reported participation data showed different associations with participation. Results from this study suggest that perceived social support of caregivers differs between countries and is associated with their child’s participation. These factors need to be considered when generalising results from different countries.

Dysfunction among Families of Children with Intellectual Disability in India Using Systems Model: Prevalence, Pattern, and Severity of Impairment.

Objectives:Family dysfunction is observed in families with children with intellectual disability (ID). We study the prevalence, pattern of dysfunction, and severity of impairment in these special families using Systems approach.Methods:Sixty-two special families (a child with ID) and 62 typical families (all children with typical development) were included in the present study. The presence of ID was confirmed and quantified with the Binet–Kamat Scale of intelligence or Gesell's Developmental Schedule and Vineland Social Maturity Scales among the special families. In the typical families, brief ID scale was used to rule out ID. Prevalence, pattern, and severity of family dysfunction were assessed using Family Apgar Scale, Chicago Youth Development Study Family Assessment Scale and Global Assessment of Relational Functioning Scale, respectively. Appropriate bivariate analyses were used.Results:About 53% of special families and 19% of typical families had family dysfunction. About 21% of special families and 71% of typical families had the satisfactory relational unit. Areas of adaptability, partnership, growth, affection, resolve, beliefs about family, beliefs about development, beliefs about purpose, cohesion, deviant beliefs, support, organization, and communication were significantly different between special and typical families. The functional impairment was significantly more in the special families.Conclusion:Family dysfunction is more prevalent among special families in India using systems approach. These families should be screened for dysfunction, and family therapy be prescribed when required.

Development and Standardization of a Test of Motor Proficiency in Children with Intellectual Disabilities in India

Purpose: To develop a scale for the assessment of gross and fine motor skills of the children with mild and moderate intellectual disabilities so that their skills could be assessed and accordingly interventions in physical activities could be specifically designed for them. Method: Thirty-eight items for the Test of Motor Proficiency scale was developed after initial try out, pilot study and final try-out by the researchers. Fifty children with mild intellectual disabilities (n = 26), and moderate intellectual disabilities (n = 24) aged between 6 to 17 years fulfilling inclusion and exclusion criteria were selected from special schools in Jammu district, JK the correlation of BASIC-MR (M = 151.92, SD = 18.08, N = 50) and Test of Motor Proficiency (M = 49.22, SD = 12.23, N = 50) was highly significant r (48) = .76, p< .05. The construct validity assessed through test retest was r (48) =.97, p< .05. Implications: The Scale can be used in the assessment of gross and fine motor skills of children with mild and moderate intellectual disabilities for clinical and research purposes.

A Family Study of Consanguinity in Children with Intellectual Disabilities in Barwani, India.

Background:Intellectual disability (ID) can be inherited in families through consanguineous marriage. The ID in an individual can be associated with the ID, epilepsy, and mental illness in their parents. Such connections can be seen more closely among consanguineous marriages in tribal and nontribal population in India.Objective:This study shows a few common patterns of the consanguineous relationship in the parents of children with ID in India.Materials and Methods:This is a case series research design. Extreme or deviant case sampling was applied. Data were collected in homes, camps, and clinical settings in the Barwani district of Madhya Pradesh, India. The patterns of consanguineous marriages and the relationship between children with ID and their relatives with ID, epilepsy, and mental illness were analyzed and reported with pedigree charts.Results:Multiple patterns of consanguineous marriages in tribal and nontribal populations were observed. ID was found to be associated in children with their relatives of the first, second, and third generations.Conclusion:ID may inherit in individuals from their relatives of the first, second, and third generations who have ID, epilepsy, or mental illness and married in the relationship. Appropriate knowledge, guidance, and counseling may be provided to potential couples before planning a consanguineous marriage.

The National Trust: A viable model of care for adults with intellectual disabilities in India.

The longevity of people with intellectual disabilities is increasing in developing nations. However, developing nations lack a proper system of care for aging persons with intellectual disabilities. Until now the care has been provided by parents and relatives in the home environment in developing countries, but this scenario is also changing; therefore, there is a strong need to explore a plan of care for this population which is also feasible and replicable. The National Trust is an autonomous body of the Government of India which has developed a comprehensive plan of care for adults with intellectual disabilities. In this article, the National Trust is discussed using a socioecological model. The replicability and suitability of this model for other developing countries are discussed.

Important Research Priorities in Intellectual Disability in India: A Public Health Perspective.

Important Research Priorities in Intellectual Disability in India: A Public Health Perspective.