Caregiver Support
This blog series is all about family and today I am talking about caregiver support. I say caregivers rather than parents because each family system is unique. Some children are cared for by their grandparents, adopted parents, aunts and uncles, or godfathers and godmothers. Regardless of who it may be, it’s a family system and caregivers need and benefit from Child Life support, too! I will be discussing how Child Life Specialists learn and support caregivers because we wouldn’t be able to do our job successfully without their guidance!
You Know Your Child Best
As Child Life Specialists, one of the first tasks we work to complete when we meet a family is an initial assessment. Meaning, we are trying to understand the full picture- the family, current stressors, the child’s medical history, and more. As you can imagine, a child or teen isn’t going to want to sit down with us for hours to answer all our questions about who they are and what they’re having a difficult time with. How boring that would be for them! So, naturally, we turn to the caregivers-the parents of these children who know them best. Through caregiver conversations, we gain a better understanding of who your child is as a person-their likes, dislikes, their worries, their goals… And, throughout the medical journey, we turn to caregivers again and again to share thoughts and ideas on how we plan to support their child or children because they can provide unique insight.
Helping with Language
One of the biggest ways I believe Child Life Specialists provide caregiver support is through our conversations around language. As we know, medical jargon can be all over the place! There are so many acrnoynms and ambiguous, complex terms that it can be difficult to break down in ways children can understand. That’s where Child Life comes in.
One of the biggest questions I get from caregivers is, “how do I explain that to my child?” or they may jump to the assumption that their “child won’t understand.” Therefore, they try to avoid explaining the medical terminology altogether. Or worse, they use euphemisms to sugarcoat things a bit out of protection for their child. When this happens, I like to sit down with caregivers and ask them to consider what their child may know already. Then, I think about where the child is developmentally and how much information they can benefit from. For example, if a child is 7 or 8 years old and is meeting all the milestones as others their age are, I ensure that caregivers are using honest, concrete language when describing procedures, diagnoses, etc. If a child is a visual learner, I encourage caregivers to use photos, videos, or props to use in combination with their language to help their child absorb the information better. *Note: for those who are preparing to talk to their child about a new diagnosis, check out the Leukemia Diagnosis blog for helpful insight.
Caregiver support around language comes up again and again throughout treatment but one of the toughest conversations we can have is talking to caregivers about explaining death. Now, I am not saying a caregiver should feel like they have to be the one to initiate this type of conversation but if they choose to, Child Life Specialists provide a lot of support around these topics. We can role play how to start this type of conversation, what questions to ask your child first, and then how to transition to what is going on in your child’s body that is prevention them from getting better. Moreover, we can provide bereavement and palliative care support if the family chooses to remain in the hospital.
End of Life Care
When a caregiver hears that all treatment options have been exhausted, it’s devastating. They can feel lost and have trouble knowing what steps to take. As a result, social workers will often take the reins and provide caregiver support by helping with some difficult decision making. But, we as Child Life Specialists, help caregivers reflect on what they want for their child or what their child might want or need. Discussions around sibling support are very common as caregivers are unsure when to notify them and how to broach the subject in a thoughtful way. Legacy building discussions are also very common as we want to help the family continue to build memories together and have opportunities to be present with one another. Too often, families lose their privacy in the hospital so it’s important that families receive the protected time they need to share, create, and be present with one another during end of life care.
A Go-To Emotional Support
Finally, Child Life Specialists are valued emotional support clinicians to caregivers. Since we are one of the few team members that are consistently working with your child throughout their medical journey, we have the honor of getting to know your child well. For this reason, caregivers feel comfortable coming to us for help or advice when they’re concerned about their child’s well-being. We serve as sounding boards when you need to just get some things off your chest. And, we serve as a helpful go-to’s when you have questions about the hospital, resources, etc. Above all, we go to bat for you and your family throughout the medical journey, helping you and your family feel heard.