JL1007P: Engaging Caregivers in Supporting Both Loved Ones and Oncology Providers

Background:
Cancer caregivers are an under-recognized resource and poorly supported by the oncology community despite producing significant benefits to their loved ones with cancer. As the population ages and family structures are more diverse, the need for engaged and educated caregivers is increasing. Clear communication between caregivers, loved ones, and the oncology team is often lacking. Caregivers often report initially being left on the “sidelines” but as the disease progresses, being asked to provide medical care and critical decision making for their loved one. This progression is usually without adequate preparation, education and support. Commonsense and easy-to-administer interventions that support collaboration between caregivers and oncology practitioners are needed. Two advocacy organizations are collaborating to meet this need.

Intervention:
Courage Groups, an organization founded to champion the role of the caregiver, was developed by a caregiver who went from casual observer to caregiver warrior during his loved one’s illness. As a result of this experience, Courage Groups has developed a caregiver webinar alongside a communication tool: the “Caregiver Dashboard.” The Dashboard utilizes 1-10 ranking graphs across multiple dimensions of the patient’s and caregiver’s reality. Both the simple-to-understand Dashboard and accompanying caregiver webinar are offered at no cost to the caregiver. These were produced in partnership with Cancer Commons, a non-profit cancer organization dedicated to improving the lives of people going through cancer.

Discoveries:
A focus group of caregivers and clinical professionals evaluated and offered input on the Caregiver Dashboard. The Dashboard has three major goals: 1) to serve as a roadmap across multiple dimensions of cancer progression (especially useful for a new caregiver), 2) to function as a communication tool between the caregiver, their loved one, and the treatment team, and 3) to engage the caregiver in a care plan by identifying them as an integral part of the oncology care team as early in the process as possible.

A webinar and subsequent YouTube produced by Cancer Commons entitled You’re Not Alone Caregiver; Validating the Caregiver Experience has received stellar reviews for emphasizing the unique role of the cancer caregiver. Additional Cancer Commons services include scientific review of medical records and treatment plan, treatment options research, and plain language explanation of oncology related testing, clinical trials, and expanded access programs. Over half of the people seeking assistance from Cancer Commons are caregivers. These services can remove the burden facing caregivers and their loved ones as they seek to ensure they are receiving the latest scientific evidence related to their cancer type.

Implications:
The alliance of Cancer Commons and Courage Groups and the utilization of the Caregiver Dashboard, provides the Advanced Practitioner (AP) and their teams a means of guiding caregivers from passive observers to advocates and warriors. This will increase a sense of control, and mitigate the unnecessary toll on both patient and caregiver. The promise of a more engaged caregiver for the AP is improved quality of care and quality of life for the patient.