Researching with Children Diagnosed with Neurodevelopmental Disorders in India: A Reflective Account

Springer Nature,

Abstract

Children’s participation in research has evolved significantly in recent times, reflecting a shift from their historical exclusion. Ethical and scientific advancements have encouraged researchers to engage with children as active contributors to knowledge. In psychology, children’s involvement in research has improved the understanding of their mental health outcomes and has led to the development of more relevant, age-specific interventions. However, researchers continue to experience logistical and ethical challenges when working with children. These challenges range from obtaining informed consent from parents to mitigating power imbalances during the procedure of the study. This chapter is based on my doctoral research that explores the effects of visual brainwave entrainment (BWE) on children’s cognitive performance. In my research, I worked with children diagnosed with neurodevelopmental disorders, namely, attention-deficit hyperactivity disorder (ADHD) and autism. The chapter outlines five key lessons that I learned from engaging with the children during my fieldwork. The chapter highlights practices such as conceptualizing age-appropriate research protocols, facilitating child-friendly and inclusive environments, and offering appropriate ethical gifts’ that help in gaining trust, mitigating stress, and promoting mutual engagement. The chapter also contextualizes these lessons within India’s cultural and institutional landscape, emphasizing how stigma, inconsistent research infrastructure, and child – adult hierarchy impact ethical research practices. It offers practical guidance for researchers in low-and-middle-income countries aspiring to work with children by bridging theoretical knowledge with on-ground realities. This reflective narrative underscores the importance of relational ethics, humility, and child-centred approaches in conducting meaningful research with vulnerable populations, such as children with neurodevelopmental disorders.

Author:

Sandhya Basu