How to Support Patients With a Young Adult or Child Caregiver During COVID-19

By Christine Calafiore, LSW

Being a person with cancer can be challenging. Being a parent with cancer during a global pandemic brings added layers of challenge that may be more difficult to navigate without support. When a parent is diagnosed with cancer, young adult (YA) and child caregivers (CC) may take on different responsibilities and be considered a caregiver to the parent with cancer. While parents with cancer and their YA and child manage change in their own worlds, they may also experience physical and emotional changes with each other.

They may experience disruptions and changes in their life after their parent is diagnosed with cancer. During the coronavirus disease 2019 (COVID-19) pandemic, there are additional challenges being experienced by YA and CC that parents with cancer should be aware of. As schools have closed and circumstances change, the people and places that YA and children interact with, and how they interact, have changed. The time they now spend in and outside their homes have changed. YA and CC are taking on different roles and responsibilities of teaching themselves at home, being taught by a parent at home, preparing meals, added chores, activity cancellations and their parent’s cancer treatment. The multitude of changes that may be experienced when their parent has cancer during a global pandemic may influence different types of physical and emotional challenges.

Just as YA and CC do not have access to their typical support community outside of the home, the parent with cancer’s support community may have changed too. Parents often rely on the support of family, friends, and community members to help them manage challenges, both expected and unexpected, during treatment for themselves and their children. Due to the stay-at-home orders and isolation caused by COVID-19, parents may not want to risk people outside of their home having additional contact with them or their household members like they did in the past. This may lead to more responsibility being placed on the parent with cancer, another adult in the home or the YA and CC.

We see a change in dynamics in the home, including a shift in responsibility between household members when a parent has cancer. These are challenges the parent with cancer and their treatment team can look out for and discuss to address appropriately. Regardless of when the YA or CC is told about the diagnosis, children tend to worry about the survival of their parent¹, have misunderstandings and delusions about cancer² and may experience a change in behavior². This can lead to the YA or CC defaulting to a few common coping strategies including distraction, keeping thoughts inside their own head, helping others, parentification and wishful thinking.³

The parent with cancer may choose to address challenges on their own or through the use of outside support. Because it is already common for parents to lack the confidence and language skills to discuss their diagnosis and treatment with their child, it may be even more difficult for a parent to address specific changes and challenges in the home.² This could lead to further misunderstandings, delusions and worries about the parent’s cancer for a child. Choosing outside support from a local cancer agency, social worker, nurse or other health care professional to talk to the child or YA can bring a feeling of normalcy about how the child is feeling about their parent’s diagnosis, and their experiences that they may not get from only speaking with their parent.² Speaking with a professional for support from their treatment team including a nurse, social worker or other knowledgeable team member can also help the parent learn how to explain the complexities of cancer and their treatment in a way that their child can understand.

At CancerCare, we offer a number of services for patients with cancer and their caregivers. Counseling is available to those in New York and New Jersey, and online support groups and case management services to help patients navigate practical support challenges are available nationally. CancerCare also offers the HOPEline at 800-813-4673, open Monday through Friday, with calls answered by master’s level oncology social workers who can provide support and guidance to those affected by cancer and their loved ones.

References:

• Krauel, K., Simon, A., Krause-Hebecker, N., Czimbalmos, A., Bottomley A., & Flechtner, H. (2012) When a parent has cancer: challenges to patients, their families and health providers, Expert Review of Pharmacoeconomics & Outcomes Research, 12:6, 795-808, DOI: 10.1586/erp.12.62

2. Semple, C.J. & McCaughan, E. (2013) European Journal of Cancer Care 22, 219— 231, Family life when a parent is diagnosed with cancer: impact of a psychosocial intervention for young children.

3. Thastum, M., Johansen, M. B., Gubba, L., Olesen, L. B., & Romer, G. (2008). Coping, Social Relations, and Communication: A Qualitative Exploratory Study of Children of Parents with Cancer. Clinical

Child Psychology and Psychiatry, 13(1), 123—138. https://doi.org/10.1177/1359104507086345