Disability dilemma: The caregiver too needs care

Shubha Nagesh & Pheba Mathai

HEALTH WORKERS need to be at peace with themselves even as they work with people who have problems. October is traditionally the month when we recognize the importance of mental health and perhaps it should once be dedicated to the health worker.

Just how important and meaningful this can be Sunita Singh will tell you. She is the head of Latika Roy Foundation’s Child Development Centre. The kids she works with have multiple disabilities and complex needs.

“When we are stressed ourselves,” she says, “we can’t be there for the children. If our own mental health is strong, we can respond appropriately to the child’s needs. Our work is really intense! We need to be positive and calm to do it. Otherwise, our own stress gets reflected in the child.”

As October passes, the articles  written, hashtags generated and special events held all over the world are soon forgotten.

 We forget at our peril. Suicide, domestic violence and child abuse are just a few of the inevitable outcomes of ignoring mental health concerns, concerns the pandemic has only worsened.

The World Health Organization (WHO) theme for the year is Mental Health in an Unequal World — appropriate given the extreme inequities in accessing mental health services. Among the many groups that have difficulty with mental health services, the disabled are at the top of the list.

 Disability is a well-accepted risk factor for many mental health conditions. Parents and caregivers often experience the same isolation, loneliness and lack of support as the disabled themselves and their risk for depression, anxiety and other mental health problems is also high. Good Community Based Organizations (CBOs) make mental health support a priority when working with families.

Disability organizations support parents in many ways outside the therapy and education they provide for their children, including school inclusion, social inclusion, government certification, employment, awareness, and advocacy programmes. Staff worry and think about the children they work with and their families, far beyond what their job descriptions require. But the staff and professionals who provide those services are often forgotten.

During the pandemic, most CBOs have not only continued therapeutic and educational services for children but have also been pillars of support for parents, siblings and extended families at a time of great stress — with staff visiting homes to share their gadgets where smartphones were not available, setting up systems for grocery and medical supplies, setting up counselling sessions, and so on.

CBO staff experience stress on a daily basis as they provide therapy, do physically and emotionally demanding work with children, host group meetings and listen empathetically to parents facing multiple issues due to their children’s disability. And, of course, during COVID, staff not only helped families cope, they were coping with the pandemic themselves.

“We are mostly at the giving end, not the receiving. Our job is to constantly motivate and encourage others. Also, the progress we see in children is slow. Sometimes the effort that we put in and the result we see are not proportionate and that can be demotivating,” said a psychologist.

This raises important questions. Can staff recognize the signs of exhaustion, burn-out or being overwhelmed? While taking care of others, do they remember to care for themselves? How can management support junior staff to invest in their own mental health? How can organizations establish a milieu that encourages staff to share their mental health concerns? Awareness, understanding and strong support systems are crucial.

Rekha assists professional staff and helps with child transport. She says, “I go every day in the van to pick up and drop the children. I try to make them laugh if they are sad, and calm them if they are upset or shouting. Everyone takes care of one another.”

Such human connections are essential for mental health. “When we talk to our supervisors, we get support. We feel heard and understood. The psychologists help us if we need it. We also have very clear and friendly protocols,” said Sunita, a child development aide.

“Before COVID, we had outings, get-togethers for staff and with children, which helped to de-stress. We also used to attend workshops outside,” said Rajnish, a therapist.

Although health professionals are aware of mental health difficulties and the importance of addressing them, challenges remain. CBOs and any company that cares about staff well-being could explore these simple ideas:

Overcome stigma: Ask people how they are coping. Call them after hours if they seem to need extra support. Share personal stories, particularly from senior staff members, to normalize mental health. Personal accounts are powerful and can shift attitudes. 

Invest in mental health: Train staff, build a team, integrate mental health and emotional well-being into the organization’s calendar. Foster empathy and encourage staff who are making efforts. Integrate and incorporate mental health in the training calendar. Provide safe and comfortable spaces within the organization’s premises for people to meet one-on-one. Employ social workers and counsellors and keep mental health in focus when making decisions about timings, transfers and leave policies. Mental health days make good economic sense.

Make self-care a priority: Staff should be aware that their own mental health affects others (at home and at work) and that this is especially true for children. Staff can be trained and supported to understand good mental health and recognize the warning signs of difficulties so they can seek help, knowing that their organization will support them.

Health is more than just physical well-being. Mental health is more than just one day in October. CBOs are already leading the way by creating positive places to work and more and more people are trading higher salaries for deeper satisfaction. CBOs can also lead by creating the systems and structures that good mental health support requires.
 

The authors work at Latika Roy Foundation, a community-based organization for disabled children and their families in Dehradun