CANCER CAREGIVERS-THE DIFFERENCE Peggy Anthony, RN, MHS,CNOR Patient Advocate Committee

Cancer Caregivers-The Difference Estimated 2.8 million individuals in the US are providing informal care for an adult family member or friend with cancer Cancer caregivers devote more hours per week-32.9 hours vs. 23.9 hours for non cancer caregivers 62% of cancer caregivers vs.49% of non cancer caregivers were more likely to communicate with healthcare professionals and to advocate on behalf of the patient

Cancer Caregivers-The Difference Cancer caregivers were nearly twice as likely to report needing help and information with end of life decision-making Cancer caregivers are called on to assist with complex treatment decisions soon after diagnosis Cancer caregivers experience high levels of emotional stress Cancer caregivers are asked to perform tasks that they may or may not be adequately prepared to do Dx – biopsy, core biopsies Prevention – cervical dysplasia Staging – lymph nodes, etc Palliative – obstruction, brain swelling (risks must be weighed against benefits) Reconstruction – cover areas where skin edges won’t come back together, ie: scalp / arm, etc. or insert implants to provide more normal appearance of body structure, ie: breast

Cancer Caregivers-The Difference Cancer caregivers are vital to cancer patients’ well-being Fewer resources are directed to help cancer caregivers Cancer caregivers and cancer patients are interdependent New research shows that more is needed to better understand at what point providers and clinicians need to intervene to assess the well-being of caregivers

The Caregiver’s Perspective Open communication/truth-telling Little attention has been paid to caregivers’ specific informational needs Caregivers are expected to enter the new treatment setting with the patient and actively participate from the moment of diagnosis

Expectations for Caregivers Assist with decision-making for treatment Integrate new medical information Learn new illness-related terminology Adapt to a new setting Find the time to accompany the patient to appointments

Interacting with Caregivers Cultural assessment/needs Offering trials on the first visit Clear treatment information is key Active listening to reduce caregiver burden Frequent communication

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