Esha* broke down, tears streaming down her face as she stared at the ground, Her sobbing filled the silence in the room. Another mother handed her a tissue but nobody in the room rushed her, as they knew what she was going through; they had each been in her place. She finally gave voice to those difficult words: “I just found out that my child has autism and I don’t know what to do.” Amid the congested crowds of Mumbai, Esha has difficulty taking her child out in public; inconsistent behaviour, inability to sit still, cognitive delays, and limited language quickly draw attention. Additionally, India’s pervasive societal stigma against those with disabilities is an oppressive burden for Esha.
The family’s small living quarters and the polluted atmosphere add more pressure by creating an unhealthy environment for raising a child with autism. These conditions restrict Esha’s ability to work with her child and provide limited opportunities for privacy when she needs a break.
As the mother, societal expectations place the full responsibility of caring for the child on Esha’s shoulders. She receives little support from other family members and, worse, her in-laws blame her for giving birth to a child with a developmental disorder. Dealing with the child by herself, while facing criticism and exclusion from family and society, significantly impacts Esha’s mental well-being.
Hundreds of kilometres from Mumbai, in the rural Sehore District in Madhya Pradesh, Meena* and Prakashji* have finally arrived at the psychiatric out-patient clinic in the District Hospital, following up on behalf of Meena’s brother, Raj, who has been suffering from severe Bipolar Disorder for a decade. In actuality, the entire family battles Raj’s condition alongside him. If his medication is interrupted, Raj may lash out, threaten, and even beat his family members.
“I feel scared… that he might do something. He doesn’t do anything, but he speaks like that, so I feel scared,” says Meena. Apprehensive and tense when her family is out, Meena goes to her neighbour’s house instead of staying at home with her brother. Meena’s younger brother, unsettled by Raj’s unpredictability and abuse, left home to study at a hostel. Powerless against the stigma surrounding mental health issues, the entire family has taken great precautions to hide Raj’s mental illness from relatives. Earlier, the treatment at a private centre cost Prakashji nearly Rs. 4 lakh, an exorbitant amount for a farmer. Prakashji was reduced to selling five acres of precious farmland for a dirt-cheap price to raise enough money.
Prakashji’s tears as he recounted the story reflected the emotional burden placed on him. The hardships faced by Esha, Meena, and Prakashji are ubiquitous in India. Studies have shown that caregivers of patients with developmental disabilities and mental illnesses experience a massive emotional load.
According to a study by Ampalam and others, the caregiver burden scores were significantly higher for caregivers of psychiatric patients than for chronic medical illness. Studies by Singer and Bailey also show that mothers of children with disabilities are prone to depressive symptoms. Several studies have affirmed the need to address the emotional and mental well-being of the caregivers. The treatment process cannot stop with the patient, but must extend to the caregiver as well. Having a mental health clinic provide family-centred care instead of one that looks only at the patient can be invaluable to both the caregiver and the patient, as a physician treats the patient not just through a biological lens, but within the context of his family’s sociological and cultural dynamics.
At Ummeed Child Development Center, a Mumbai-based NGO serving children with disabilities, while Esha’s child attends his occupational and speech therapy, she receives mental health support in the form of counselling. She discusses her relationship with her husband, how much support she has, personal stresses, and various other factors that must be addressed to help her take better care of her child. Vibha Krishnamurthy, founder and medical director of Ummeed, states, “Family-centred care provides an understanding on how home life affects the patient, prompting physicians to look into the caregiver’s well-being.”
The process of informing and raising awareness about the treatment process can also help reduce the stress that caregivers feel when tending to their loved one. According to Rahul Sharma, clinical psychologist at the Sehore District Mental Health Programme (DMHP) in Madhya Pradesh, “Collaboration with the family promotes optimum recovery.” Although Raj’s illness has been difficult for Meena and Prakashji, receiving inexpensive medicines and treatment support from the district psychiatrist and psychologist has helped them manage his condition at home. Dr. Rajendra Bairagi, psychiatrist at the Sehore DMHP, said, “[To] reduce anxiety of caregivers, physicians can educate them about mental illness, the course of illness, the side effects of medicines, and proper dosage of medicines. We can train caregivers during early intervention through a small booklet regarding particular illness to understand the illness properly.”
Finally, Esha’s support group creates a safe environment where participants can be honest, open, and ask questions without fear. It also forms a much-needed social network, where Esha can reach out to someone for help, or offer a shoulder of support to another mother. In Mumbai, parents of children with disabilities have started support organisations such as Forum for Autism, which specifically for these purposes. Forum for Autism connects mothers of newly-diagnosed children with other mothers in their neighbourhood. While support groups are becoming more widespread, many caregivers still feel alone.
There must be a greater focus on the mental well-being of caregivers. Such initiatives should be integrated into the standard clinical set up, where it becomes the norm for professionals to assess and identify caregiver stress and intervene with appropriate care as needed. Scientific research has already suggested that addressing the needs of families is important for most chronic diseases, such as Parkinson’s disease, Muscular Dystrophy, and Alzheimer’s.
Esha’s and Meena’s stories are not just found in urban Mumbai or rural Madhya Pradesh, but are prominent all over India. While there are millions living with mental health issues or developmental disabilities, there are just as many people spending significant portions of their days working with them. To help them take better care of their loved ones, society must acknowledge the importance of each caregiver’s mental well-being, and provide them with all necessary support.
*Names changed
Anusha Raja and Ambar Mehta worked at Sangath and Ummeed Child Development Center on AIF William J. Clinton Fellowships.
