Understanding the Important Role of Caregiving

Bellinda King-Kallimanis, PhD, LUNGevity's Director of Patient-Focused Research
Dr. Bellinda King-Kallimanis

Caregiving and the word burden are often put together, however, this is an unfortunate coupling of words. Cancer is a burdensome disease, the healthcare system is complex and burdensome as are the treatments, but the act of being there for a loved one with cancer, whether family or friend, is not the burden. When I was helping to provide care for my mother-in-law Mary, who had stage IV non-small cell lung cancer, it was at times stressful advocating to get a second opinion and navigating the paperwork required to sign-up to Medicaid (government health insurance for those who lose their job due to illness/disability), but if my husband and I had to do it all over again, we would in heartbeat. The silver linings included quality time spent together whether that was grabbing a meal or even sitting watching TV after a session of chemo.

Being a person who provides care for your family member (kin or chosen) can be isolating but it is an experience, that according to a 2020 report Caregiving in the US1, that more than 1 in 5 Americans partakes in. These caregivers provide on average 23.7 hours of care per week. Without informal caregivers, the healthcare system would likely collapse. Despite this, due to a lack of resources and appropriate tools, the well-being of the caregiver is unfortunately too often overlooked.

Limited research has been conducted to understand the caregiver experience in lung cancer, what research has been conducted has found complex relationships between caregiver quality of life, distress, and coping2. My experience was one that brought us as a family closer together, but I would be remiss in thinking that happens for everyone. However, because many studies collect information at only one time point along the trajectory of caring, our understanding of caregiving is limited. For example, we don’t really know how caregivers’ functioning, their needs and quality of life shifts in relation to changes in their care recipients’ treatment changes, health and well-being.  Also, with 39% of men providing care1, when studying caregiving we need to ensure men and generally a diverse group of people are recruited. This is because there may be important gender/cultural differences that could impact the success of caregiver intervention.

In September of 2020, we launched Project PEER with the overarching goal to understand the lung cancer patient experience, irrespective of diagnosis (stage/history), outside of the clinical trial setting. In addition to this, the survey is also designed to learn about your experience as a caregiver as well as learning about your person's lung cancer diagnosis and treatment trajectory. To achieve this, we have a specific section for you to report your social supports and overall quality of life. We at LUNGevity want to hear your voice. Your voice helps us to learn about the needs of caregivers across the spectrum of a lung cancer diagnosis. Questions about your experience that we’d like to be able to explore include:

  1. Do caregivers with greater social support report higher quality of life and well-being?
  2. What care-recipient factors influence quality of life and well-being of caregivers?
  3. How does caregiver quality of life change over the course of a year, how are these changes related to changes in the care-recipient's health? 

Informal caregiving is part of the fabric of healthcare, making sure that it can be sustained is critical. Via research, we can advocate for policy and funding changes to help support those providing critical care to their person with lung cancer.

We invite you to share your perspective by participating in Project PEER.

Learn more

Related Reading:

[1] The National Alliance for Caregiving and AARP. (2020) Caregiving in the U.S. 2020. Available at https://www.aarp.org/content/dam/aarp/ppi/2020/05/full-report-caregiving-in-the-united-states.doi.10.26419-2Fppi.00103.001.pdf (Accessed: 1 December 2020).

[2] Kim Y, Carver CS. Unmet needs of family cancer caregivers predict quality of life in long-term cancer survivorship. J Cancer Surviv. 2019;13(5):749-758. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6832821/

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