Examining the Multiple Roles of Cancer Caregivers: Under the Support Services Radar Screen

This presentation explores lessons learned about the psychosocial, mental and physical needs of low-income, minority cancer caregivers. In this community-based participatory research study, we highlight the considerable disparities in available support services within low-income urban areas. We triangulate data from town hall meetings, advisory committee meetings, and interviews with low-income, minority cancer caregivers. Interviews were conducted by cancer survivors and caregivers themselves.

Our study results indicate that caregivers serve as a support system and take on multiple roles, including confidante, caretaker, nutrition expert, driver, educator, financier, decision-maker and/or patient navigator. Their lives are frequently put on hold to help their loved one through the challenges of cancer, yet they lack the necessary support for their own diverse needs. Caregivers often crave the knowledge transfer and comradeship of another caregiver who has experienced cancer care-taking. However, resources such as support groups, education and respite care are not regularly available in low-income urban areas. In Cleveland, Ohio, where this study took place, myriad organizations that address caregivers' needs often exist in the surrounding suburban areas. Despite these organizations' efforts to cater to the inner-city population, cultural resistance and physical barriers (including transportation) impede service utilization by low-income, minority caregivers.

Currently, caregivers lack the requisite resources to learn the strategies and skills that enhance their ability to provide supportive cancer care while avoiding burnout and maintaining their own lives. Policymakers and public health practitioners need to understand the importance of developing and implementing policies that provide increased resources for low-income, minority caregivers.