Family health and the palliative care trajectory: a cancer research agenda.

Abstract

This article reviews the published literature related to families of palliative care patients with cancer within the context of the Cancer Control Framework of the National Cancer Institute of Canada. Three themes emerged: 1) the impact of terminal cancer on the family; 2) family functioning--responses to terminal cancer; and 3) quality of palliative care from the family perspective. The most substantial body of research describes family needs, family caregiving burdens, caregiving costs and the impact of the patient's terminal cancer on the health of family members. Small samples, high nonresponse rates, selection biases and a lack of standardized outcome measures have impeded the advancement of knowledge. Method development studies are warranted, including the development of instruments to measure family care constructs. Longitudinal studies to examine the long-term impact of the patient's functional status, mood, symptom distress and quality of life on family members are needed. Research should also explore the effects of family composition, socioeconomic factors, culture and spirituality on families' experiences with terminal illness. Identification of families at risk as well as development and rigorous testing of appropriate interventions should become priorities.