Patients, family caregivers, and patient navigators

Abstract

Navigation services may be strengthened by establishing a partnership between the patient, family/caregiver, and the navigator. Involvement of a patient's familial or social network in the navigation process would allow patient navigators to spend more time and resources with the subset of patients who do not have support from family and friends. The Partnership Approach evolves from combining the strength of a patient's existing social support and network with the delivery of navigation services. To develop this novel approach, the Family and Caregiver Workgroup was convened at the American Cancer Society's National Leadership Summit. Individuals were asked to serve in this group due to their interest, research, or experience in family and caregiver issues. By the end of the Summit, the workgroup had achieved 3 major outcomes: 1) enhancement of current patient navigation services by building a partnership between the patient, family or primary caregivers, and navigators; 2) identification of a set of core functions that a family/caregiver could perform in a partnership; and 3) consensus on a set of metrics to use with caregivers and patients. Five major domains were selected to measure patient and/or caregiver outcomes: quality of life, satisfaction with care, social support, distress, and caregiver burden. Metrics appropriate for each domain were recommended. Integration of these domains and scales in current navigation services is needed to develop future research. Evidence from such research would help determine whether the Partnership Approach contributes to improved patient and caregiver outcomes.