Family Members of Persons with Cancer
One in two Americans will develop cancer in their lifetime (SEER, 2005-2007 data). Most cancers are diagnosed in late adulthood, with the median age of diagnosis being 66 years (SEER, 2003-2007).
Cancer treatments are improving and, thus, caregiving for cancer patients continues for longer periods now than in the past, when deaths occurred rapidly. Caregivers today are also asked to participate in many more complex medical procedures than previously, including the administration of oral and other chemotherapies delivered at home. In addition, caregivers take care of patient’s access ports and lines for delivery of medicine and taking of blood, administer pain medicines and monitor patient well-being.
These complexities, along with the emotional worry and distress which a diagnosis of cancer occasions and patients’ physical function and cognitive losses which may occur make cancer caregiving extremely stressful.
Despite a great deal of interest and literature about the impact of cancer on all members of a family, relatively few interventions exist specifically for caregivers of cancer patients. A recent meta-analysis and review found 29 randomized clinical trials of interventions for family caregivers of cancer patients (Northouse et al., 2009) published in peer review journals. Of these, only 9 focused exclusively on the caregiver, with the others offering interventions which also involved the patient.
Many interventions reviewed by Northouse et al. focus on psychoeducation, helping family caregivers to learn the practical aspects of caring for a cancer patient including symptom management, physical caregiving, and some appreciation for the emotional and psychosocial needs of patients and family members. Skills training interventions teach caregivers how to cope and communicate more effectively within the context of caring for someone with cancer. Only 17% of the reviewed interventions were focused specifically on psychotherapeutic relationships to help caregivers with the distress of caregiving for cancer and the need for self-care. Some interventions combined approaches.
Most of these interventions focused on short (3 months of less) periods of time. Interventions were done face-to-face or via telephone. Most were provided in the clinic, with some interventions occurring in patient homes. While some newer interventions are utilizing computer-based programs, there is little efficacy data yet on such approaches. Attrition rates are often high in studies of cancer caregiving due in part to the high death rate of patients being cared for. Interventions averaged 7.5 hours (range 1.7-18 hours) and duration of the intervention ranged from 1.2 to 56 weeks (median 11.5 weeks). 1
Meta-analysis of the effect of the interventions showed that small to moderate significant effect sizes for interventions related to illness appraisal, (less caregiving burden, greater caregiving benefit, fewer information needs), coping resources (use of more effective coping strategies and higher self-efficacy), quality of life domains including reduced anxiety, better family relationships, and better social interaction. However, depression was not greatly improved by the interventions, perhaps due to the underlying and impervious sadness caused by caring for someone with cancer, especially in its terminal phases. Some positive outcomes took time to see, such as increased caregiver benefit and physical and social functioning. Interventions which offered higher intensity of interaction were more effective in most cases. Face-to-face or telephone interventions were more effective than mixed method methodology. Interventions which were only for caregivers led to greater caregiver benefit assessments.
The authors conclude that, “These interventions appear to produce more prepared, less distressed caregivers which in turn, is likely to result in more positive benefits for patients.”
Northouse, L.L., Katapodi M.C., Song L, Zhang, L, & Mood D.W. (2010). Interventions with family caregivers of cancer patients: Meta-analysis of randomized trials. CA: A Cancer Journal for Clinicians, 60, 317-339.