Who will care for the caregiver? Role of occupational therapy in parents’ mental health

Team Udayavani, Jul 16, 2021, 10:47 AM IST

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There are various campaigns, rallies, awareness programs, and workshops conducted to increase social acceptance of children with autism and help bring justice to their right to participate wholeheartedly in the community. This draws attention to the people involved in these darlings’ upbringing, the stigma faced by parents for bearing a child with autism, and its impact on their mental health and daily life.

One in sixty-five Indian children belonging to the age group of 2-9 years, is diagnosed with an Autism spectrum disorder. It is a developmental disorder that restricts effective communication and gives rise to difficulties in thought, perceptions, and behaviors. The condition can be detected in children as early as two years of age.

From the time it is detected, various therapies, interventions, and other professional involvement ensure that the autistic child enters society as a functioning and independent adult. There are many social stigmas attached to autism, worldwide, which hurts the child and the parents and affects the upbringing of the child, leading to dysfunctions in the child and parents’ health, behaviors, and inclusion in society.

Parents’ efforts are beyond dispute. Parents of children with autism appear to have a life that revolves around their children. Their routine is mainly based on the therapy schedules for their child, activities at home, helping them out in their daily activities like eating, bathing, dressing until they become independent, and other personal routines like working a job, taking care of another child, and home management.

Parents also have difficulties in assuming their wanted life roles with the decreased balance between them. With this kind of unbalanced life roles and time-consuming routines, other factors like low social support, financial background, decreased leisure participation, and quality of relationships with immediate folks take a toll on the parents’ overall quality of life.

It is seen that most mothers of children with autism suffer from mental health problems such as depression, insomnia, anxiety and blame themselves for the child’s disorder.

A study conducted by Nishi Tripathi in 2015 suggested that maternal depression is linked to the degree of impairment in autistic children. Although genetics is a causative factor and the exact cause is still undetermined, the social belief holds the mother responsible, leading to severe distress in mothers compared to the fathers. With the disappearance of the gender role boundaries over the years, it is found that fathers are also in pain which is in terms of but not limited to finances, caregiving roles, and support.

A review by Ilias in 2018 observed that divorce rates are higher in families with children with autism than children without disabilities.

Emotional exhaustion is one of the major factors that hinder the extensive caregiving and nurturing of a child with special needs. Such physical, mental and emotional stresses significantly affect parental involvement in care roles and other important life areas. When these issues are not addressed, it influences the caregiving style and techniques used for the child, general mental health, tolerance levels, energy levels, work satisfaction, and social relationships.

As occupational therapists, we aim to improve occupational performance and satisfaction in children with autism spectrum disorder and improve their parents’ quality of life. We work in a client-centered and family-centered manner, creating goals and interventions based on the child and parent’s needs, and improve overall functional participation in personal and social life.

As discussed above, occupational therapists work with parents to figure out their unbalanced roles, affectations in their routine and give them strategies to maintain equilibrium among life roles. It includes various problem-solving techniques and effective coping strategies used to form healthy habits and skills to achieve maximum participation, like making the child independent in self-care, giving the parent time to engage in leisure or work in that duration. As the child is on the path of becoming functional, parents are also on their journey for better quality of life and efficient care practices.

Time management is a valuable tool and helps achieve occupational balance, i.e., equal quality and balance between work, daily activities, leisure, and rest. A well-balanced life ensures satisfaction, a safe space to express emotions, engagement in prioritized activities, and helps develop a deep, meaningful connection with their child.

(Co-Authored by Ms. Hasti Divecha, Student of Masters in Occupational Therapy at Manipal College of Health Professions, MAHE & Mr. Koushik Sau, Assistant Professor -Senior Scale, Department of Occupational Therapy,MCHP , MAHE)