Neurodevelopmental disorders are characterized by developmental deficits that produce impairments of personal, social, academic or occupational functioning. NDDs may include intellectual disabilities, communication disorders, autistic spectrum disorders (ASD), attention deficit hyperactivity disorder (ADHD), specific learning disorders and motor disorders.

Financial Strain, Emotional and Psychological Challenges of Caring for Children with NDDs

 Parenthood is generally associated with high levels of stress. But parents of children with special needs and disabilities experience much higher levels of stress than parents of typically developing children. Parenting a child with a neurodevelopmental disorder is therefore a challenging journey impacting many areas of the parents’ life. When a parent learns that their child is going to be born with a developmental disorder or is diagnosed with one, often their journey is one that is filled with emotions, financial, social and other psychological challenges that impact their quality of life and stress levels to a great extent. The chronic pressure of raising a child with intellectual or developmental disorder has been shown to impair the physical and mental health of parents. It disrupts family functioning.

Social Isolation and Lack of Support:

The experiences of parents caring for children with such disorders are largely unknown or misunderstood. A child with NDD often experiences more complex physical and behavioral challenges and often lack knowledge about their conditions. They require involvement of multiple systems and integrated care in their management. These challenges contribute to intensive parenting responsibilities. The difficulties and narratives of parents taking care of such children with special needs largely remain unvoiced because of fear of societal stigma, social misinterpretation, shame and lack of awareness.

Educational Resources for Parents of Children with NDDs:

Studies conducted all over the world have shown that having a child with NDD has a very severely negative impact on the quality of life of parents. The World Health Organization (WHO) defines quality of life as “an individual’s perception of their position in life in the context of their culture and value systems in which they live and in relation to their goals, expectations standards and concerns”.

The Impact of Parenting a Child with NDDs:

Raising a child with NDD means you are looking at individuals with difficulty or impairments in cognition, communication, behavior and sometimes motor skills. Such kids may require to be put in special schools, need applied behavior analysis, speech and hearing therapy etc. These therapy sessions, schooling and transportation put a great deal of financial strain on the parents as they are quite expensive in nature.

The Need for Acceptance and Understanding:

Lack of acceptance and support from their families put a great deal of pressure on the parents. Various studies have revealed instances where the mother is held solely responsible and as the parent who spends a major chunk of time with these children in most cases, emotional strain a woman experiences has been said to be higher than what the male counterpart faces. Parents handling such children need a lot of support, acceptance and help caring for and dealing with the child. The amount of internal struggles they face and having to deal with the great level of responsibility they did not expect definitely puts them on the line and makes them vulnerable to various mental disorders like depression, anxiety, stress, burnout etc.

The Importance of Support Systems:

Despite all the feelings of struggles and lack of support, the psychological pressure the parents face is often neglected by themselves and they put on a mask of emotional stability and pretend to be strong even when they are truly exhausted. Having a child with NDD is a great responsibility.

Fear, Uncertainty, and Future Concerns:

Parents are usually burdened with the fear as to whether they are caring enough for the child. They are scared and uncertain about their future, if the child would be able to survive without the parents, if the community would mistreat them due to lack of awareness and empathy. Other factors like separation anxiety, lack of socializing due to fear of not being accepted and making their child as their primary focus, these parents fail to set aside time for their own relaxation and entertainment.

Parental Burnout: A Growing Concern:

Parental burnout is a syndrome that has serious effects on both parents and children and cause high levels of stress in the parenting domain. It is marked by extreme weariness due to parenting and emotional distance from children and results in negative repercussions for both parents and children.

Symptoms and Effects of Parental Burnout:

Parental burnout usually manifests in the form of anxiety, depression, constant frustrations, emotional detachment from the child or an overwhelming sense of parental obligation along with a constant demoralizing belief that they are not doing enough.

The Link Between Parental Burnout and Mental Health Issues:

Parental burnout is often linked to psychological forms of escapism such as alcohol and other substance abuse, in addition to depression, exhaustion, suicidal ideation and tendencies or an increased need to physically escape from the parenting environment. The feeling of isolation, or not being accepted, as well as the stigma of not being within the ‘norm’ is a regularly seen form of stress experienced by these parents.

Effective Management Strategies for Parents:

The caregivers of children with NDDs need all the support they can get. The stress and other mental health symptoms seen in them can be effectively managed with accessible psychological support through telehealth platforms. These platforms offer mental health support to these overwhelmed and tired parents. They offer services ranging from counselling, individual, group or family therapy, behavioral therapy, medication management, etc.

Comprehensive Care for Families with Children with NDDs:

Having a child with a developmental disorder is an enormous challenge. So much that, set aside mental health, parents have to plan days and weeks beforehand to step out of their homes to run errands. They need to be able to entrust their child to a known and reliable person who also needs to be familiar with the child and know its routines and most importantly, handle tantrums or meltdowns that may happen in the absence of the parents. In such a situation, making time to seek support for mental health may seem impossible.

Telehealth: A Convenient Solution for Mental Health Support

Telepsychiatry has made it convenient for these parents to take support at the convenience of their homes without having to worry about leaving their child behind. Be it depression, anxiety, escapism or burnout, today, telepsychiatry platforms provide mental health services and ensures it reaches the most remote locations.

It provides education about NDDs to parents so that they are better prepared to handle the challenges they have to face. Many assessments and therapies for the child can also be implemented to yield better results when parents actively participate in these sessions along with their child.

The Role of Mental Health Professionals:

The mental healthcare workers, ranging from psychiatrists, psychologists, and other therapists, provide the required therapy for families of children with NDD. They aim to reduce the psychological distress to improve the families’ social functioning and mental health. Detecting and treating the parents’ mental health by reducing anxiety and stressors that lead to burnout plays a positive role in treating children with NDDs, many of whom could have promising prognostic paths with the right treatment.