Dr Sara Douglas: Support Is Often Hard to Come By for Distance Caregivers

Distance caregivers of patients with cancer often find it more difficult to enlist a similar level of support compared with local caregivers, who often have access to social workers and health care providers, noted Sara L. Douglas, PhD, RN, the Gertrude Perkins Oliva Professor in Oncology Nursing and associate dean for research at the Frances Payne Bolton School of Nursing at Case Western Reserve University in Cleveland, Ohio.

Transcript

In your research, you noted that distance caregivers often experience anxiety and distress to a greater degree than the patients whose care they play a large part in. Why is this the case?

This has been reported by others, and we found it as well. So, we found if you look at the distress thermometer, which was the measure that we use for distress—it's a standard measure that's used in the clinical setting—when we looked at patients and then we looked at the distance caregivers and how they scored on this, there was like a 2-point difference, which was enough to move the distance caregivers into the area of concern where the patients were under that threshold of concern.

And part of it is, again, that oftentimes the patient feels a sense of support from the local caregiver if they have one, but also from the extensive team that's there. You know, the social worker, the health care providers... Everyone from the nurses to the medical assistant to the oncologist. That level of support is not available usually to the distance caregiver.

Oftentimes, those people don't even know there is a distance caregiver. And if you are a distance caregiver, oftentimes the people closest to you don't even really know that. So, it's hard for distance caregivers; they're sort of a silent group. It's hard for them to get comparable levels of support that the patient gets and that the local caregiver gets as well. And again, we see that local caregivers, while they are stressed, and I don't mean to minimize it, oftentimes their stress is not quite as high as the distance caregiver.