Caregivers of Cancer Pain Patients: Coping Intervention

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Three out of four families in the United States will have at least one family member diagnosed with cancer. In the majority of these families, one or more members will be responsible for providing care to the cancer patient. Up to 50- 80% of these patients will have significant pain, the majority not receiving adequate treatment. Important forces such as the movement out of the hospital created by diagnosis-related groups and the significant force of managed care have created a reality in which families and patients are finding themselves at home providing very complex care when that may not be their preference. The provision of this care is made more difficult by the presence of unrelieved pain. The reality is that the living room has become the intensive care unit and the place where family caregivers are exhausted and burdened. Family caregivers who have very little information about pharmacology, dosing of medications, and assessing or treating pain are asked to become around-the-clock care providers. Attention to caregiving issues is important in order to understand how this major, unpaid segment of our health care system works and what we can do to minimize the stress of caregiving. Research focusing on the family caregiver of the cancer patient with pain is limited. Much deseriptive work has focused on the cancer patient with pain, with few outcome measures included for the caregiver. Most work suggests that earegivers have increased emotional distress. The impact of caregiving for cancer patients with pain on family members' quality of life (QOL) remains unclear since valid caregiver-specific QOL instruments have not been used. Another factor limiting research progress is the lack of an empirically validated conceptual model for understanding individual differences in QOL or improving QOL among earegivers of cancer patients with pain. The proposed program of research seeks to increase knowledge about caregiving for cancer patients with pain by using a valid, caregiver-specific QOL instrument and an empirically validated stress process model. Using the stress process model for caregiving, a psychoeducation and coping skills intervention will be evaluated using a randomized, controlled design. Caregiver/patient dyads (n = 300) will be randomly assigned to standard care or standard care plus the coping skills intervention. The caregiver will attend six weekly one-hour visits containing didactic information regarding pain assessment, pain medications, side effects, recognition of emotional distress in the patient, stress management, and communication with the pain team as well as role play scenarios around these themes. The effectiveness of the intervention will be tested as well as identification of potential mediators and moderators of the effectiveness of the intervention.