Children with Attention Deficit Hyperactivity Disorder in India: Strengthening Diagnosis,Support,Training and Research

Abstract

Attention deficit hyperactivity disorder is a prevalent neuro-developmental disorder marked by inattentiveness, impulsivity, and hyperactivity, affecting children worldwide and often persisting into adulthood. In India, attention deficit hyperactivity disorder prevalence rates align broadly with global figures, but there are significant disparities in diagnosis and treatment due to varying socioeconomic factors and regional differences. This viewpoint highlights the need for enhanced attention deficit hyperactivity disorder diagnosis and support systems within India, emphasizing the gaps in research, professional training, and healthcare infrastructure. Current data indicate a prevalence range of 1.3% to 28.9%, with regional variations and higher rates among males. Notably, underdiagnosis in females and ethnic minorities persists, exacerbated by cultural and systemic barriers. The Indian mental health framework, including the National Mental Health Policy and Mental Healthcare Act, provides guidance but lacks uniform implementation and quality services. To address these issues, the viewpoint suggests increasing the number of trained mental health professionals, improving school-based support, and culturally adapting interventions. Recommendations include expanding research funding, improving professional training, and developing community-based mental health services. These measures aim to enhance the identification and management of attention deficit hyperactivity disorder, contributing to the well-being of affected individuals and aligning with Sustainable Development Goal 3 for health by 2030.

Introduction

Attention deficit hyperactivity disorder (ADHD) is one of the most common neuro-developmental conditions affecting children and is characterized by a pattern of inattentive, impulsive, and hyperactive behaviors that occur in different settings and often persist into adulthood. ¹ The Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) categorizes ADHD into different presentations: predominantly inattentive, hyperactive/impulsive, and combined presentation (meeting criteria for both). It also includes a category for partial remission. ² ADHD is associated with increased psycho-social burden and can impact on life chances, including educational success and employment.^3–5 This may be especially the case if ADHD is untreated. ⁶ Treatments for ADHD can be divided into two types: pharmacological treatments such as medications and non-pharmacological such as therapies, coaching, and other support mechanisms. However, concerns have been raised about the use of medication and the impact of diagnosis of ADHD on children and young people and emphasis placed on the importance of support. ⁷ The global prevalence rate of ADHD, for children and adolescents, has been estimated at 8.0% (95% confidence interval 6%–10%) with boys twice as likely to be diagnosed with ADHD than girls. ⁸ Potential explanations for gender differences in diagnosis include gender bias, the androcentric focus of many ADHD assessments, and potential variations in the presentation of ADHD symptoms. Girls are more likely to display internalizing behaviors, emotional dysregulation, and inattention, while boys may be more likely to exhibit externalizing behaviors. ⁹ This can result in girls being less likely to be referred for diagnosis for ADHD as a child or make it more likely that they are (mis)diagnosed with other mental health conditions such as depression and anxiety.^9,10 In addition to the underdiagnosis of ADHD in females, research has also pointed toward the underdiagnosis of ethnic minorities. ⁹ Within low- and middle-income countries (LMICs), the prevalence of neuro-developmental conditions including ADHD is said to be “considerable,” but there is a lack of quality data on the topic. ¹¹ In India, for example, a lack of research on some areas related to ADHD has been identified together with a need to increase the methodological quality of the research that is undertaken. ¹² In this commentary, we will outline the context in India and argue that ADHD is a significant public health issue that requires more resources to ensure that children and their families in India are appropriately supported. We identify areas for strengthening diagnosis and support for children and families including in school settings. Recommendations for improving professional training and research are also highlighted.

Attention Deficit Hyperactivity Disorder and Children in India

A meta-analysis indicates that the prevalence of ADHD among children and adolescents in India is broadly aligned with global prevalence rates. The point prevalence of ADHD varied between 1.3% and 28.9%, with a pooled prevalence of 7.1%. Notably, the prevalence was higher among males (9.4%) compared with females (5.2%). ¹³ In a specific study conducted in South India, the prevalence among preschool children was reported as 11.32%, with a higher rate in males (14.8%) compared with females (7.7%). This study also identified a higher prevalence in low-socioeconomic groups and among children aged 9–10 years. ¹⁴ Another large-scale survey of preschool children in South India found an overall ADHD prevalence of 8.8%, with equal proportions of 43.3% for inattentive type and hyperactive type, and 13.2% for the combined type of ADHD. ¹⁵ Furthermore, a different study in South India reported that approximately 22% of school children screened positive for ADHD. ¹⁶ In contrast, North India reported a prevalence of 6.3%, with a higher proportion of affected children residing in joint families and belonging to lower or lower-middle socioeconomic classes. Notably, no ADHD-positive children had a family history of the disorder. ¹⁷ Additionally, a study conducted in Western India at a tertiary hospital between 2017 and mid-2019 found an ADHD prevalence of 17.6% among children aged 6–15 years. ¹⁸

In a highly populated nation such as India, timely identification and effective interventions for ADHD are crucial to support children and adolescents. These interventions may mitigate the progression of additional mental health conditions and minimize the long-term effects of ADHD bringing benefits to individuals, families, and society including reducing the costs associated with the treatment. Below we discuss some priority areas to strengthen support for children and adolescents with ADHD in India.

Diagnosis of Attention Deficit Hyperactivity Disorder

Diagnosis of ADHD in India is ideally undertaken by a psychiatrist, with their signature on any statutory forms that are required by the government of India. ¹⁹ Guidelines highlight the importance of a comprehensive assessment of children referred for ADHD diagnosis, including clinical interviews with the child and their parents/caregivers, as well as teacher reports. ²⁰ Moreover, diagnosis according to clinical nosology such as the DSM-5 or the International Classification of Diseases is recommended. While structured assessment tools such as the Conners’ Parent Rating Scale, Conners’ Teacher Rating Scale, and Vanderbilt Assessment Scale may be used; however, these should not override the need for a thorough and holistic clinical assessment. ²⁰ Once treatment is decided upon, for example, medication, clinicians should review ongoing needs for medication annually. Medication is not recommended for children under the age of 6 years. It is considered if target behaviors do not improve with behavioral intervention and the child’s functioning does not improve. ²⁰

However, while the National Mental Health Policy 2014 and the Mental Healthcare Act 2017 offer strategic guidance on how mental health provision should be provided, there is unequal implementation of the policy across regions and for some groups. ²¹ Additionally, while clear guidelines exist for the diagnosis and treatment of ADHD,^19,22 there is a lack of research and information on barriers to diagnosis of ADHD and challenges in accessing treatment, including medication and psychosocial support. The existing research on mental health in India highlights issues in accessing mental health services, poor quality services, and a lack of access to mental health professionals especially in rural areas. ²³ There is no reason to suggest that this would be different for ADHD diagnosis and treatment. Thus, to support improved diagnosis and treatment of ADHD in children, it is a key that the number of mental health professionals is increased. This may require the expansion of pre-registration training schemes to increase the number of medical professionals and a focus from District Mental Health Programmes on improving practitioner understandings of ADHD. Moreover, initiatives to support mental health professionals to work in unserved areas are required to ensure equity of coverage. The use of community-based mental health services could also support easier access to ADHD diagnosis and treatment at the local level in tandem with improved referral from primary health centers to specialist centers. ²³ Improved health promotion and health literacy around ADHD for the general population is needed which should promote non-stigmatizing health promotion messaging. Moreover, the development and promotion of guidelines that encourage more interdisciplinary collaboration among healthcare professionals, including pediatricians, psychiatrists, and therapists, as well as educational professionals, are essential for providing holistic care and support to children diagnosed with ADHD and their families.

Improving Parental and Child Support

Previous research has found that psychological interventions, including behavior modification, are effective for managing mild-to-moderate ADHD, particularly when parents prefer non-medication options. Cognitive behavioral therapy and parent training are among the most well-studied interventions, often used in conjunction with medication, and have demonstrated positive outcomes. ²⁴ Parent training is a cost-effective intervention that provides parents with strategies to manage their child’s behaviors. Programs such as the “Defiant Children” manual, a 10-week course, have been shown to significantly improve management outcomes. ²⁵ Additionally, educating parents about the nature, causes, prognosis, and potential side effects of ADHD medications can enhance their understanding and ability to support their children effectively. ²⁶ Ensuring that parental education and support are situated within an ethos of care and listening to parents’ concerns is important for helping parents come to terms with the diagnosis and counteracting feelings of guilt or shame that may arise. ²⁰ Fostering social skills and friendships is another crucial aspect of managing ADHD. Programs designed to help parents facilitate their children’s social interactions can lead to improved peer relationships and overall social well-being. ²⁷ In the Indian context, complementary therapies such as the ONTRAC program (Online Neuroplasticity Targeted Remediation of Attention Deficits in Children) have shown significant improvements. While yoga and play therapy may provide additional benefits, their effectiveness can vary. The use of psychostimulants remains a viable option for managing ADHD symptoms ²⁴ but is not recommended for very young children. ²⁰ As stated earlier, regular medication maintenance visits are critical for assessing progress, addressing parental concerns, and providing necessary support and encouragement. Additionally, when applying therapies developed in high-income countries, it is crucial to culturally adapt these interventions to ensure their effectiveness in LMICs, including India. ²⁴

Strengthening Support Systems Within Schools

Children spend more time in school, making educational establishments crucial for their development. ²⁸ Moreover, schools play a vital role in providing access to and support for children and adolescents who may face challenges. This makes school-based mental health interventions significant worldwide ²⁹ and highlights the importance of school-based initiatives in India as crucial platforms for supporting children’s mental health. However, there is a lack of school-based mental health provision across India which can impact children’s well-being and children reaching their full potential. ³⁰ Mental health support in schools across India, therefore, needs to be improved with Kumar (2021) highlighting the importance of the training and recruitment of school psychologists as well as the training of teachers to better understand mental health. These recommendations are of relevance to children who are neurodivergent such as those with ADHD.

Several non-pharmacological school-based interventions for managing ADHD have been identified. In the educational setting, the Summer Treatment Program is highlighted as an effective model for intensive ADHD treatment. This program integrates evidence-based interventions into summer academic and recreational activities, employing techniques such as reward systems, response costs, time-outs, antecedent control strategies, and praise, complemented by parental training to reinforce these strategies at home. ²⁶ Global research has also identified the possible effectiveness of school-based interventions such as daily report cards, study skills, organization training, neurofeedback interventions, coaching and mentoring, interventions to improve self-regulation, and one-to-one support. However, results varied across studies and the importance of multi-dimensional interventions was highlighted. ³¹

Schools, therefore, should be equipped to offer additional support to students who are struggling with school work and social emotional behaviors including tailored educational support for students diagnosed with ADHD. Government’s guidelines on how this support should be operationalized are, therefore, needed. All school-based policies should emphasize inclusivity and provide necessary accommodations to support the unique learning needs of these students, fostering a non-stigmatized environment that promotes their academic and personal growth. It is important that educational staff is responsive to parental concerns and treat both parents and their children with respect and dignity, recognizing that both the child and the parent may be struggling with behaviors related to ADHD diagnosis, which can often impact the self-esteem of both the child and parents. Hence, empathetic support is crucial for educational establishments.

Moreover, under India’s National Health Program for Children, Rashtriya Bal Swasthya Karyakram, there is a provision for screening children for ADHD mostly undertaken by the Government Medical Officers, but this is restricted to public schools. There is currently no such program in place for private schools. Guidelines for private schools, therefore, are key and there is a wide scope for expansion of the program in all private schools. ³² Moreover, it is crucial to ensure that screening in public schools is robust and is adequately resourced. This screening could be combined with screening for other types of neurodiversity such as autism spectrum disorder and dyslexia. These screening programs should aim to provide a supportive environment, free from discrimination and stigma. ³⁰

Improving Training for Medical, Psychology, and Educational Professionals

Improved training for medical, psychology, and educational professionals is needed on the symptomology of ADHD based on the DSM-5 of Mental Disorders or other nosology as well as the Indian Academy of Pediatrics ADHD guidelines.^1,22,33 This is to improve recognition, referral, and diagnosis of ADHD. Moreover, medical professionals along with other professionals such as teachers and counselors require training on how ADHD in girls may present differently to boys to ensure that girls are not under-diagnosed. Increased training on the role of masking behaviors is needed as girls may be more likely to “mask” ADHD symptomology due to gender-based expectations. ³⁴ This is important as masking of ADHD symptomology to “fit in” can lead to delayed diagnosis with masking behaviors being shown to impact on overall mental health and well-being. ³⁵ Moreover, more awareness is needed among professionals about how the symptomatology of mental health conditions such as bipolar disorder, anxiety, and depression often overlap, so-called diagnostic overshadowing, with the presentation of ADHD, complicating the diagnosis of the latter. Hence, misdiagnosis or late diagnosis of ADHD may occur because of comorbidity with anxiety or depression, with the latter often treated first, and ADHD was not recognized. This can detrimentally impact on the life chances of individuals with ADHD as diagnosis, and support may be delayed as a result. Emphasis should also be placed on communication and interpersonal skills, as professionals will need to work closely with parents and caregivers of children and adolescents. Training to reduce stigma within health and education professions around ADHD is a priority.

Research Opportunities and Funding

Expansion of funding opportunities dedicated to research in this field in India is needed to better understand the etiology, the impact of ADHD on the population, and effective treatments and support regimes, including counseling, school-based initiatives, parenting support, and mentoring and coaching of individuals diagnosed with ADHD. The findings can be translated into evidence-based policies, ensuring that new knowledge is effectively integrated into clinical practice, school-based practice, and public health initiatives. There is also a need for high-quality community-based studies to measure prevalence of ADHD among children with Kuppili et al. (2017), ¹² recommending screening in epidemiological studies to inform public health planning. There is a significant need for research that specifically addresses the experiences and needs of females, minority populations and those in hard-to-reach areas regarding ADHD including any inequalities in provision, this should also include Scheduled Castes and Scheduled Tribes. This necessitates more rigorous research efforts to develop culturally specific and effective psychosocial interventions. More research on late diagnosis of ADHD in adulthood would also be worthwhile as well as the role of stigma in impacting on the lives of those diagnosed with the condition. This research should be high quality with robust sampling and analysis methods and should include both high-quality quantitative longitudinal studies and high-quality qualitative research to understand lived experiences. Quantitative studies with a sample of individuals who are not diagnosed with ADHD would be beneficial to understand the long-term impacts of ADHD. Given the scarcity of research on ADHD interventions in India, there is a need for further studies to enhance understanding and treatment options.

Conclusion

ADHD is a global public health issue and prevalence rates in India indicate that ADHD should be recognized as a significant concern. There is minimal research on ADHD in India and the research base needs to be strengthened with high-quality research. Increasing diagnosis, treatment, and support interventions is required, including training on ADHD for professionals. Public health campaigns to tackle stigma around the condition and improve population health literacy are also needed. Concerted effort, therefore, needs to be applied by all stakeholders, working in a multidisciplinary way, to ensure that universal health coverage including access to quality mental and neurodevelopmental healthcare services and treatments is a focus. This is key to supporting the well-being of both children and adults with ADHD and to the attainable of Sustainable Development Goal 3 by 2030 which focuses on health including mental health.