Understanding the Family's Experience | Patient Centered Care and Trauma Informed Care for Pediatric Patients

When you have a sick child, it's hard to admit that you have no control. All you can do is make sure they take their medicine and get the care they need. Everything else is out of your hands, and you have to accept that. That's very hard because you think: I'm the parent; it's my job to fix everything. I have to make it better.

Medical trauma, like any other trauma, impacts children and families both objectively and subjectively. Many medical events are frightening, painful, or uncontrollable, and it is not surprising that they can trigger traumatic stress reactions. Research suggests that it is not the objective severity of the illness or injury that influences subsequent reactions rather, it how the child or family experiences the event that determines how they will cope with it.

Research consistently finds that in relation to pediatric medical events, all members of the family can be impacted. Most studies find that parents experience traumatic stress at the same (or higher) rates as children themselves.

Read one mother's account of the impact of a child's hospitalization for parents.

Parents' responses are important in their own right, and because they may impact child responses. Children look to cues from adults and the environment to help them make sense of new or challenging situations. Parents play a key role in helping their child with coping and recovery - offering emotional support, helping children interpret what is happening, and modeling responses and coping.

Understanding Family Experiences and Beliefs

Ill and injured children and their families enter into the medical system with a range of coping skills, past experiences, and beliefs about the meaning of the event, including:

the actual or perceived life-threat
the impact of the injury or illness on the child, family, and future
how best to protect oneself or one's child from further danger
one's ability to cope with things such as painful treatments

In the aftermath of a serious illness or injury, understanding the family's experience and beliefs about the event are key to helping to manage traumatic stress responses. Trauma-triggered beliefs are not problematic in and of themselves, but they can lead to feelings, behavior, and ways of relating that become concerning for the child, the family, or for medical providers helping them. For example:

Believing "I'm alone in this" or "no one can understand what I'm feeling" may lead to avoiding potential social supports and withdrawing from friends and family.
Believing "our dreams for our child's future have been shattered" may lead to feelings of hopelessness.

On the other hand, children and families may also have more adaptive beliefs about their ability to cope, their faith, or their future. For example:

Believing "laughter will get us through this" may lead to using humor as a coping mechanism during treatment.

It is equally common for children and families to have BOTH distressing and adaptive beliefs about what has happened. Often however, the distressing beliefs are more prominent because they have stronger emotions behind them.

How Providers Can Help

There are several key steps to helping children and families manage their distressing beliefs while employing more adaptive ones. First, providers should respond to children's and families' upsetting beliefs by listening to and accepting them, without judging them. ("I understand that this is difficult and you're feeling overwhelmed; tell me how I can help you.") Once children and families feel their distress has been heard, they are much more open to exploring other more helpful beliefs. Next, providers can reinforce the parts of the child's or family's beliefs that will allow them to better manage the situation, by helping them explore their responses to each of the following steps. (Note: it is important for providers to allow patients and families to form their own responses, and to repeat back their words. Providers shouldn't try to suggest appropriate responses.)

1.) Accept the uncontrollable:

Provider: "In every situation, there are things that we cannot control. Sometimes, the uncontrollable is difficult to acknowledge or accept. What are some aspects of the situation that you feel you can't control?"

Parent: "Even though it's upsetting, my child needs to go through potentially painful treatment in order to get better."

2.) Focus on the controllable:

Provider: "Ok, you can't control the potentially painful treatment, but what aspects of that situation can you control?"

Child: "I can do things during the procedure to help myself cope - like playing a really distracting video game."

3.) Identify and acknowledge your strengths:

Provider: "What strengths do you have that you can use to help comfort and take care of yourself and each other?"

Child: "I am really getting good at staying calm even when I have to have a procedure. And when I can't, my mom helps me."

4.) Find / use the positive aspects of the situation:

Provider: "Is there anything positive that you have learned about yourself that you can apply to this situation?"

Parent: "I didn't realize how strong my child is. Seeing how strong my child is makes me stronger as a parent."

Download a handout that outlines these four steps. Children and families who identify these other beliefs often find that their upsetting beliefs, while painful and distressing at times, are also more manageable.

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1.) Accept the uncontrollable:

2.) Focus on the controllable:

3.) Identify and acknowledge your strengths:

4.) Find / use the positive aspects of the situation: