Ultimately, every individual will find themselves in a caregiving or care-receiving situation at some point in life. As a family caregiver, an individual's effort to support their loved one during difficult times leaves them in a laborious situation. A remarkable number of caregivers caring for a loved one suffering from an acute illness experience a sense of meaning, fulfillment, and profound emotional and psychological rewards. However, lifelong caregiving for a significant one diagnosed with a chronic illness or disability could be onerous. The current book chapter elucidates to the readers the lived experiences of family caregivers of children with neurodevelopmental disorders. The caregivers of children with neurodevelopmental disorders go through a life-long caregiving process. Thus, this book chapter will attempt to illustrate narratives of primary caregivers of children with neurodevelopmental disorders and the paradigm shift they experienced during COVID-19. This research is a determined effort to ensure that the stories of these unsung heroes reach a wider audience.
TopIntroduction
It is indisputable that a substantial section of the community takes up the role of an informal caregiver at a particular time in their life. Every individual at a given point in life would have become a caregiver for their significant one for at least a brief period. The role of an informal caregiver takes work. It requires an indispensable amount of time, energy, and resources that an individual invests in their daily life during caregiving. An individual is least prepared and holds limited capacity and skill set. At the same time, they are inevitably obligated to assume the role of an informal caregiver as their significant one is diagnosed with some form of illness, disorder, or condition. The lack of preparedness and a critical diagnosis that may appear as a bolt out of the blue will stick around the family caregivers for a significant time.
The challenges faced by a family caregiver are multifaceted. It is non-viable to restrict the challenges they face as financial, physical, and psychological concerns. It surpasses these customary challenges, and it is imperative to integrate the impact of caregiving on an individual’s normative life events, namely career, marriage, parenthood, families, and several other domains of life. The family caregivers experience many negative emotions, such as guilt, remorse, helplessness, anger, and denial, as they navigate through several stages of caregiving. Caregiving is associated with numerous burdens and stress for family caregivers.
The COVID-19 pandemic has amplified the challenges faced by family caregivers due to several pandemic-related restrictions, work from home, and the closure of healthcare services and educational institutions. During the pre-covid period, the primary caregiver looking after the primary needs of the person with a disability experienced utmost stress and burnout. However, during the pandemic individualistic responsibility of a caregiver shifted to a shared familial duty that would ensue as relationship strain, familial conflict, and complex crisis. In the Indian context, family caregivers are not officially recognized and lack the provision to seek physical and psychological support to ameliorate their well-being.
The outbreak of COVID-19 affected people from all walks of life, including children, adolescents, older adults, employees, women, the minority section of the community, and innumerable humankind. The challenges faced by different sections of the community are diverse. An enthralling observation during the COVID-19 scenario is that the informal caregivers providing care for any form of illness, disability, or diagnosis of COVID-19 itself would represent and constitute one or more of the sections of the community as mentioned above of the community. For instance, an informal caregiver could be a youth, an older adult, an employee, a woman, or anyone belonging to the minority sections of the community. It indicates that informal caregivers experience additional strain during the pandemic exacerbating their challenges and the pressure to carry through the other existing roles.
Primary caregivers of children with neurodevelopmental disorders likely experience higher stress levels and disruptions to their quality of life and well-being. (Khan,2018; Ganjiwale et al., 2016; Hooda,2020). Neurodevelopmental disorders (NDDs) are behavioral and cognitive conditions that appear throughout the developmental phase and are characterized by significant difficulties in the development and performance of a particular set of intellectual, motor, and social functions (World Health Organization, 2019). Children with chronic medical disorders are more likely to acquire comorbid neurodevelopmental issues that interfere with their daily activities (King-Dowling et al., 2019).