Patients with advanced cancer and family caregivers’ knowledge of health and community services: a longitudinal study

The present study examines the knowledge of health and community services reported by patients with advanced cancer and their family caregivers, and compares patient-stated use with their knowledge of availability. A longitudinal study of the quality of life of patients with advanced cancer was conducted out of the cancer services of The Canberra Hospital, a teaching service, in Canberra, Australian Capital Territory, Australia. Some 317 subjects were recruited sequentially, comprising patients (n = 181) and their nominated family caregivers (n = 136). Patients were more aware of the available health and community support services compared with their caregivers, and differences were significant for most allied professional services, as well as some key supportive care institutions and community programmes. Knowledge of community support services was variable and low for those specifically associated with terminal care. While congruence of knowledge for dyads was quite low in some areas, overall household knowledge was high. The identified sources were mainly non-medical. Nurses, social workers and alternative practitioners, as well as family, friends and commercial sources were the main categories which were identified. No statistically significant changes in knowledge or sources of information occurred over time. Further longitudinal research would assist healthcare teams to understand the role of health and community services in the advanced cancer setting. The identification of systemic and regional weaknesses in communication may assist in improving family knowledge and improve timely access to important supports in the advanced cancer setting.