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National Cancer Institute

Caregiver Panel and Discussant

Richard Schulz, Ph.D.
Director, University Center for Social and Urban Research
University of Pittsburgh
Pittsburgh, PA

  • Many gaps exist in knowledge concerning the impact of cancer survivorship on survivors' families. Specific topics to consider include the role of the family in the survivorship phase, managing transition into recurrence, how the survivorship experience affects the ability to cope with a recurrence, interactions of survivorship-related health issues with age-related health concerns, and methodological challenges to developing causal relationships between survivorship and health outcomes.
  • Child caregivers represent a relatively new population to examine in terms of the effects of cancer survivorship. When determining the consequences of children providing care, a significant methodological issue is that of accurately defining a comparison group to ensure that problems arising in this population are due to the child's status as a caregiver; it is important to control for the socioeconomic status, neighborhood, and health status of the children themselves. The siblings of cancer patients appear to have similar experiences to that of child caregivers, implying that the effects on these children may be attributable to being in a situation where the children observe the suffering of someone close to them, rather than their caregiver status.
  • As the population of the United States ages, more adults will be placed in the position of providing care for family members with cancer. Research on this population suggests that caregivers experience psychological distress that may not improve over the course of their caregiving experience; distress may lessen only after the patient dies. Further research is needed, however, to determine whether the levels of anxiety and depression experienced by adult caregivers are significantly higher than those experienced by the general population. The positive aspects of caregiving should not be overlooked, nor should the paradox that caregivers suffering from depression can still find benefit in the caregiving experience.
  • Because a spouse is often the most important caregiver, the effects of cancer and cancer survivorship on marriage can be significant. Interventions designed to augment support and intimacy may serve as models for interventions to help all family caregivers. Caregiving is an important public health issue because it places caregivers at risk for adverse health outcomes; thus, ways to mitigate the negative impact of caregiving are needed. Analysis of family interventions for other chronic illnesses showed that including the spouse had positive effects on the patient's feelings of depression. Family interventions also had positive effects on the caregiving burden, depression, and anxiety experienced by family members.

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