How Shriners Children’s Supports the Family Unit While Treating the Patient

Once upon a time in medicine, a hospital would treat a child for a condition almost in a vacuum, zeroing in on the patient’s physical ailment without much thought of their other needs. Now, thanks to a better understanding of the emotional and mental toll that illness takes on a child, hospitals like Shriners Children’s tend to the child’s psychological well-being as a close second to their physical well-being.

And some organizations take that comprehensive care even further by supporting the psychological needs of the patient’s family, too, ensuring that parents, siblings and caregivers have professional help for their fears and anxieties.

Here, once again, the Shriners Children’s healthcare system goes the extra mile. It not only offers psychological support to the family unit, but also aids with everyday practicalities that may often be overlooked by other hospitals but are keenly felt by families with hospitalized children, including financial, transportation, schooling and housing considerations.

We spoke with two longtime members of the Shriners Children’s staff, a clinical psychologist and a care manager, to better understand the many ways that the system cares for the entire family unit while treating the patient – and why that’s so important.

Psychological Care

For the past 25 years, clinical psychologist Sylvia Garma, Ph.D., has provided consultation services at Shriners Children’s Northern California, focusing on burn care over the past five years. She notes that her primary concern is and always will be the patient, which is why caring for the family is key, too. “It is important to keep in mind that the goal is to return the patient to the family, and, therefore, by supporting family well-being, we are supporting the patient,” she said.

Parents are often traumatized by the events leading to the hospital admission and by the care their child will require. “For some, traumatization can get in the way of their ability to be emotionally present for the child,” Dr. Garma said. Dealing with this trauma in an unfamiliar environment – the hospital – which may be far from home and typical support systems, adds to the challenge.

She works with them to tackle feelings of guilt and inadequacy that may arise when their child is hurt or ill. “These feelings are independent from the events that led to the injury [or condition] and stem from a generally unrealistic feeling of having failed to protect their child,” Dr. Garma said. “They struggle with feelings of inadequacy related to not being able to provide what the child needs at the time or not being able to stop the pain or resolve the anxiety or sadness that the child may be experiencing. Children can react with anger when injured or suffering. And the anger is often directed at the parent, a safe figure in their lives.”

Other common emotions faced by parents and caregivers in such situations include fear of losing the child, anguish of watching their child in pain, concern of being judged by others and anxiety about the child’s future well-being.

“They may have financial concerns related to time away from work or from losing employment after taking extended time away to be in the hospital,” she said. “In many cases, parents worry about siblings left in the home who are not receiving the attention they need.” If siblings are present at the hospital, psychological care is offered to them as well.

Helping parents work through these feelings allows them to be more present and helpful to the patient’s recovery. This is crucial in the case of very young children, who are typically reached best by working through the parents.

Tackling many of these issues comes down to information, Dr. Garma says. “Providing parents with education regarding what they are facing is incredibly helpful. For example, basic information regarding how the hospital functions and how they can take care of their basic needs (food, laundry, communication) while in the hospital seems trivial yet is essential.”

She also keeps them informed regarding the treatment plan and progress of their child’s care (including translating complex medical language) and connects them with in-hospital services such as social work or support groups.

Parents can be afraid of sharing potentially frightening or painful information, such as a plan for surgery or the death of a family member, with the patient. “Providing education regarding the importance of communicating truthfully with the patient helps the parent overcome some of this fear,” Dr. Garma said. “We stress the importance of protecting the patient’s ability to trust the parent.” She sometimes role-plays with parents before entering the patient’s room or makes sure to be present with the parent to support proper communication.

Practical Considerations

In her 26 years working at Shriners Children's Greenville, Cherlon Allen has seen all the ways the hospital cares for families when it comes to practical matters like finances, transportation and more. Although she started at the facility as a nursing assistant, she has worked in various nursing positions there over time, including inpatient, outpatient and care management. In 2015, she became the manager of care management, and she continues to have a patient care role as well.

Of course, the biggest way that Shriners Children’s helps families is by offering medical care regardless of their ability to pay or insurance status. Particularly these days, when the dollar doesn’t seem to go as far and family budgets are stretched to the max, the true value of this financial help is immeasurable.

“Financial burdens affect families every day,” she said. “Families coming to Shriners Children’s express to me frequently the relief they feel. This also includes families that may have high-deductible plans. This is an important aspect to families because they know the treatment will not be put off or delayed. They don’t have to make a sacrifice between daily bills that need to be paid and treatment that may be needed for their child.”

Going hand in hand with financial concerns is the cost of travel, which Shriners Children’s helps to mitigate when possible. Often, actual Shriners (also known as “road runners”) volunteer to drive patients and their families to appointments, often trekking long distances across state lines. International travel may also be arranged for select cases. In fact, in 2023, Shriners Children’s patients and families traveled 30 million miles by road and air – at no cost to themselves – to receive medical care.

Depending on the location, other services available to families include housing, often offered in conjunction with Ronald McDonald House Charities; interpreter services for non-English-speaking families; schooling services, so patients don’t fall behind; and – last but not least – preparation for at-home care.

“When the decision has been made for a child to have surgery with us, our RN care managers get involved very quickly in the beginning of the treatment plan,” Allen said. “We start with pre-surgical planning, sometimes months in advance. This includes educating the patient and families on what they may need when they are home, how to care for the child at home and what the child’s activity will look like when they return home.”

Each family leaves with a surgical education packet, featuring helpful information, and the direct contact information for their assigned care manager in case questions arise. “Having this is a comfort to families knowing they have someone who can help them navigate this process,” Allen said.

Throughout her 26 years at Shriners Children’s, there’s one emotion she sees time and time again in response to these services. “Families are very thankful for all we do to help their child, including the wrap-around care by our staff and all the services they can obtain under one building. It is a joy and honor to have a small part in the excellent care provided to the children.”

Note: Services may vary depending on location. Call your local Shriners Children’s location for more information.