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National Cancer Institute

Family Survivorship for Patients with Cancer: Existing Knowledge and Future Directions

Barbara Given, Ph.D., R.N., FAAN
Michigan State University
East Lansing, MI

  • Cancer is a family issue; 66 percent of patients diagnosed with cancer will need family care. Despite this, there is little research describing caregivers' roles and duties and the impact cancer has on them. Many survivor concerns or problems (i.e., health concerns, fertility/sexuality issues, financial, employment, and insurance concerns) also are concerns of the caregiver. Caregiving affects family communication, and the changing duties of caregiving over the course of treatment may lead to alterations in family roles.
  • Caregivers often receive little information or assistance from professionals, yet they may share responsibility for decision-making with the patient, help to monitor and manage symptoms and side effects, help detect early complications, and monitor ongoing care and follow-up. Caregivers are at risk for distress and depression and for disruptions in employment that may lead to economic hardship.
  • Transition—whether improving or deteriorating—is a major stressor for caregivers, as is fear of recurrence. Adjustment to the "new normal," which is defined by the patient's health and function after treatment, also can cause significant stress. Interventions are needed to address both patient and caregiver transition into survivorship. Similar to the IOM guidelines on follow-up care for survivors themselves, guidelines for caregivers and family members also are needed.
  • Little is known about the experiences of minority and low-income caregivers, underscoring the need for research on the many aspects of caregiving. The long-term impact on caregivers' physical and emotional health should be examined, as well as the consequences of late effects. Research also is needed to determine if the quality of care during treatment affects the survivorship period, how technology could assist family caregivers, and whether and what types of interventions targeted toward caregivers who are distressed will reduce distress during survivorship. Family caregivers are a major resource, and it is important to understand how they contribute to survivorship and how they should be supported.

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