Family Support in Advanced Cancer

Abstract

Changes in the health care system have resulted in a shift of cancer care from the in-patient arena to ambulatory and home settings. This shift has likewise translated into increased family involvement in the day-to-day care of the person with cancer. Cancer patients have multifaceted needs, including disease and treatment monitoring, symptom management, medication administration, emotional support, assistance with personal care, and assistance with instrument care. Family caregivers may be ill prepared to assume these tasks, requiring information on the disease and treatment, as well as instruction in technical and care skills.Moreover, caregiving must be balanced against already established roles and role responsibilities. In addition, family caregivers have their own emotional responses to the patients' diagnosis and prognosis, and may require coaching and emotional support themselves.The health care system can facilitate positive outcomes by embracing the family caregiver as a partner in the health care team, providing instruction and guidance to the caregiver as he/she assumes this role, and evaluating the home care situation. Research to date has only scratched the surface of testing interventions that meet the needs of the cancer caregiver.A research agenda is proposed to more fully elucidate the cancer caregiver's experience throughout the illness and treatment trajectory, and identify the means to effecting positive outcomes for the person with cancer, their family caregiver, and the health care system. (CA Cancer J Clin 2001;51:213-231 Family members may need to devote more time to caring for their patient and often react to the strains that patient care introduces into their daily lives. Most pressing, however, will be concerns about the patient: How to maintain comfort, how to manage equipment, and when to report changes in their patient's status. Moreover, family members may be concerned about their abilities to balance the demands of care with other responsibilities and wonder what the immediate future will be like for them and their patient with advanced cancer.It is against this backdrop that the support needed by family caregivers for persons with advanced cancer should be viewed. The role of family caregivers has shifted from one of custodial care to a complex, multifaceted role that includes symptom management, monitoring for changes in hallmark symptoms, equipment care (e.g., infusion pumps or IVs), patient transport and advocacy, and management of activities/responsibilities the patient has foregone because of illness. Due to advances in treatment, the cancer care trajectory has increased from days and weeks to months and years. Few Strategies for Family CareTo date, the oncology care system has not fully incorporated "family care" for patients at home. There are few documented, effective strategies to guide family members caring for patients with advanced cancer. The absence of strategies persists despite the fact that burden and distress on family caregivers has been studied since...

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