Care for the Cancer Caregiver: a Qualitative Study of Facilitators and Barriers to Caregiver Integration and Support

Abstract

Informal family caregivers are critically important for patient care throughout the cancer care trajectory. Family-centered care, which seeks to integrate family members as experts, is a framework that values partnerships with family members and can benefit both the physical and psychosocial health of patients. However, little standardization or system-level implementation of family-centered care models to integrate and support family caregivers have emerged in adult oncology care settings in the USA. To better understand potential barriers and facilitators to the integration and support of family caregivers in cancer care settings, we conducted semi-structured interviews with informal family caregivers (n = 12) and members of the cancer center leadership team and health care providers (n = 11) at an NCI-designated Comprehensive Cancer Center. We frame our results using the social ecological model and identified facilitators and barriers at the individual, interpersonal, and system level. While caregivers and team members were able to identify facilitators and barriers at the individual (i.e., caregivers are motivated to learn, but overwhelmed and focused only on the patient) and interpersonal levels (i.e., relationships are a valuable resource, but communication is sometimes challenging), team members were more likely to identify system-level barriers (i.e., constraints within the larger healthcare structure). To implement family-centered care in cancer settings, it is incumbent on the healthcare system to pursue standardization of communication, programs that facilitate family integration and support, and advocate for policy change. Barriers must be addressed at multiple levels to provide inclusive and supportive environments for all patients and their families.