The CCLS introduces themselves and their role, brings them a chair, and begins to assess the parent’s understanding. The CCLS explains the trauma room and who is currently working on their child, while continually validating the overwhelming nature of the situation. The CCLS asks about the child’s other caregivers and explains the visitation policy in detail to the father. The father expresses how terrified and alone they feel, and the CCLS quickly assures him that the CCLS themselves will be there for support every step of the way.

As a CCLS within the pediatric hospital setting, when I reflect on the pandemic’s impacts on my role, these are the kinds of experiences that come to mind. As the COVID-19 pandemic began, hospitals across the world enforced new guidelines regarding family members and caregivers’ presence during appointments, visits, or admissions. Children’s hospital administrators were forced to decide whether one or both patient’s primary caregivers could be present for a hospital admission, surgery, or even an ER visit. Hospital staff members, like CCLSs, were left to enforce rules they knew would bring additional stress to an already overwhelming experience. At my hospital, patients were limited to one caregiver at their bedside in the ER. Siblings, extended family members, and friends were not allowed
at bedside, unless exceptional circumstances (i.e., end of life) warranted leadership approval. Knowing this, I found myself using my assessment skills to identify the unique needs of the caregivers I met during each shift.

As CCLSs, caregiver support is well within our scope of practice and often an integral part of the role in critical care areas such as the ER. Working at a Level 1 trauma center means that I expect to see patients of all acuities daily. Prior to the pandemic, I provided parental support often during interventions such as intubations, resuscitation, or the new diagnosis process. What has dramatically shifted due to COVID-19 visitation protocols is the role I play in these intense moments. What previously felt like problem-solving, such as assisting caregivers in navigating how to get to the ER or spending time with siblings so that all caregivers could be present at bedside for updates and patient support, switched to assisting the present caregiver to the ER exit so they could physically update those who could not be in the hospital or ensuring that doctors spoke directly into a cell phone so that other caregivers could hear the newest medical updates. Previous acts of bringing water and blankets to worn out caregivers then became sitting with the child while the caregiver used the restroom or picked up food from the cafeteria. Instead of making sure a family had a card game to play during a long wait, I found myself asking if they needed to borrow a phone charger to extend the FaceTime calls to home to discuss a child’s condition or plan of care. Over the past two years, I have had countless moments just like this where I had to step into the role of the “second caregiver” who provided support to the parent or caregiver at bedside.

My assessment priorities changed as the role of the second caregiver came to fruition. Conversations that used to be focused on previous hospital experiences, personality and interests of the patient, and short-term goals shifted to include discussions regarding family make-up, social history, and current stressors or worries of the caregiver. These bits of information would assist me in advocating for how further conversations could be handled with the family, such as ensuring that all doctors could be present at once so the child’s other caregiver could be included through video chat and could ask questions themselves. For patients and families who were learning about a suspected new oncological diagnosis, it changed the way I made initial assessments in these situations. Knowing that the caregiver at bedside with their child was going to be alone with the medical team when learning the news of a tumor being found or abnormal bloodwork concerning for leukemia, I made it a priority to build rapport with both the patient and the caregiver early on. I knew how valuable it would be for my face to seem “familiar” when life-changing news was later given.

Fortunately, current protocols at my workplace have changed. Two caregivers are now allowed at bedside during ER visits, and extended family members and siblings can visit a patient within a specific protocol. As a CCLS, I quickly saw the positive impact this change had on my patient’s ability to cope through procedures and caregivers’ ability to cope with new diagnoses and medical decision-making. Though I now find myself having more typical caregiver support interventions, the experiences I had during the pandemic increased my confidence in how to advocate for the needs of patients and their loved ones, whether present or not. I found myself becoming comfortable in conveying my assessment of not only the patient’s needs, but the caregiver’s needs as well.

For example, when working with new mothers whose young infants were being admitted, I always ensured they knew we had breast pumps available for use in the ER and access to a fridge or freezer for storage. Even something as simple as advocating that our child life team use part of our yearly budget to purchase phone chargers to provide to families in need has made a difference in the ways we can support the caregivers we see daily. Advocacy is a vital part of child life, and I experienced unprecedented growth in my confidence in speaking to members of the medical team and leadership to express the unique needs of each patient and family and to encourage the team to get creative in the support we provided.

Just as we look to provide children with appropriate choices to give control, when possible, I learned how I could advocate for the same opportunities for their caregivers and loved ones as well.

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