Study: Many Families With Dying Children Have Negative Experience With Health Providers

Published: Tuesday, May 9, 2017 - 3:59pm
Updated: Wednesday, May 10, 2017 - 7:09am

For parents who lose a child, the experience is difficult enough without health-care providers adding to their grief.

But according to a new study from Dr. Joanne Cacciatore, a researcher with ASU’s School of Social Work, many families with children who are dying have negative experiences with their health-care providers.

That was the case for Maya Thompson.

When her son, Ronan, was 3 years old, she noticed his eye looked a little off — lazy, maybe. She took him to an ophthalmologist, but she was told nothing was wrong.

But her intuition told her differently, so she kept going. Eventually, they were sent to Phoenix Children’s hospital for an MRI. Doctors found a small mass above his left eye and another in his abdomen.

Ronan was diagnosed with neuroblastoma, a form of childhood cancer. For his mother, the health-care providers didn’t make it easier.

After multiple surgeries and many rounds of chemotherapy, Ronan died at the age of 4.

Thompson’s experience in the health-care system with her son as he was dying is likely not out of the ordinary.

Throughout all of his treatment, Thompson practically lived in the hospital, all day and all night, with her son.

ASU’s Dr. Joanne Cacciatore worked with 18 families in similar situations to Thompson — all of them had children with terminal cancer. She looked at their interactions with health-care providers and found that most of their experiences were negative. 

Cacciatore is an associate professor in the School of Social Work at Arizona State University, and she’s the founder of the MISS Foundation, which provides counseling, advocacy and research for families experiencing the death of a child.

But while families report challenges with health-care providers in these situations, Cacciatore works with a lot of health-care providers on just this issue. She says she doesn’t think it’s because they don’t care, rather it’s because they’re human.

Cacciatore's study was published in OMEGA — Journal of Death and Dying, and it's titled "The Long Road to Farewell: Th Needs of Families with Dying Children."

Thompson founded the Ronan Foundation after his death.

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