Supporting Children of A Sick Caregiver

As you likely already know, Child Life Specialists primarily work in pediatric hospitals. As a profession, we are aware that there are needs beyond that, (hence why I work in the community) but it can be difficult to find funding to work in other areas such as adult hospitals.

Within adult hospitals, there are many sick caregivers that are trying to navigate and cope with a debilitating disease, a chronic illness, or an invasive surgery. They’re struggling physically and emotionally but guess who is also struggling?

Their children. Their children are having difficulty understanding why their caregiver is going to so many doctors appointments, why they’re always tired, or why they don’t seem to be getting any better after taking medicine. The potential changes children and families may experience is limitless. But it’s important to consider how many adults are faced with the challenge of telling their children that they’re sick and being honest about the changes that come with it. Hence, the importance of bringing Child Life in.

The Immediate Impact

When I think about supporting children of sick caregivers, the first goal I have is ensuring that the child or children know how will they be impacted in the immediate and near future. I ask caregivers to consider, “will you be able to spend just as much time with your child?” Or, for a parent facing a debilitating illness, “what physical or cognitive changes are likely to come up?” These types of questions encourage caregivers to think about how their child’s everyday life may be altered because of the medical needs while also limiting fear because their child has anticipated the transitions. Furthermore, when talking honestly upfront, children can normalize the changes rather than jumping to conclusions thinking, “what is going on?!”

Preparation for the Medical Experience

Another important piece to supporting children who have sick caregivers is preparing them for the hospital experience. If a child is going into this type of environment for the first time, it’s very helpful for them to understand what kinds of machines they will be seeing, how their caregiver may look different, and what their job or role is when visiting. For example, if I had a 8 year old going to visit their Dad who just underwent open heart surgery, I would talk to them about the different lines (i.e. IV, arterial line) they will see, the bags of medicine connected to the lines, and the incision/bandages they will see on their parent’s chest. Then, when discussing their role, I’d note how important it is to be gentle- a light hug or holding of Dad’s hand might be the best way to say hi or show love during their visit. Also, I’d make sure they brought some activities to keep them busy because it’s likely they will have down time. For an 8 year old, I’d suggest bringing an iPad, art materials to make a card, or an easy board game or cards to play with their parent. Lastly, I’d normalize how BIG feelings may come up during their hospital visit and that it’s okay to take a break when needed.

Final Thoughts

We have to remember that children think the WORLD of their parents so seeing them vulnerable can be very scary. Children can become frightened when they see their parent unwell or become overwhelmed by all the machines their sick caregiver is connected to. When this happens, it’s helpful to have a Child Life Specialist or trusted adult present to help with the transitions in and out of the room.

In addition, if a child has had previous experience with death, it’s important to note this in advance. If a child I’m working with has visited someone in the hospital who eventually died, I want to know about it because this could be a potential trigger. Or, worse yet, it could lead to misconceptions. Some children can associate death with the hospital space if they have very little exposure to that environment or setting. Others may have difficulty even entering a certain hospital or unit because all they can think about is that "one time their grandma was there for pneumonia. Even watching TV shows or movies that make hospitals out to be scary, sad places can be harmful, causing a child to think of worst-case scenarios.

Finally, if the sick caregiver is in fact facing a terminal illness, there are many other factors to consider. To note just a few, you’ll want to consider what the long term medical road will look like, how you can formulate lasting memories as a family, and how you can prepare your child for your death. There is no easy way to navigate these conversations so stay tuned for my series dedicated to Death/Bereavement.

Please reach me directly at empoweringkidz@outlook.com or the contact tab if you and your family are facing these challenges now.