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Dr Sara Douglas: Distance Caregivers of Patients With Cancer Have Distinct Needs


Distance caregivers have unique needs, explained Sara L. Douglas, PhD, RN, the Gertrude Perkins Oliva Professor in Oncology Nursing, associate dean for research, the Frances Payne Bolton School of Nursing, Case Western Reserve University.

Distance caregivers of patients with cancer have unique needs for information, due to the high degree of uncertainty associated with providing remote care—they can’t always see the patient and have less interaction with health care providers—and require customized education, information, and emotional support, explained 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, in an interview for this year’s virtual American Society of Clinical Oncology meeting, on video conference interventions for this group of caregivers.


What process did your team utilize when designing the 3-part intervention for distance caregivers of patients with cancer that included coaching with a nurse practitioner or social worker, participation in patient oncology visits, and access to a website specifically for distance caregivers? Why do you believe no such interventions have been developed for this group thus far?

So basically, the design for the intervention came from a variety of different sources. Number 1, there's been a lot of research done looking at psycho-educational interventions for local caregivers. So, we went to that literature to sort of see what are the active components, if you will, of those interventions that have been shown to be effective with local caregivers. And what we found was that providing caregivers with education, information, emotional support, etc, had been found to be successful. So we knew we wanted to use that type of a theoretical approach. But we’d also done some preliminary work, and some of the other colleagues on the team had done some work, looking specifically at distance caregivers of patients with cancer. So, we knew that those caregivers had some unique needs for information and support that were not found in interventions that have been used with local caregivers.

For example, distance caregivers have a high degree of uncertainty. You know, they can’t see the patient. Oftentimes, they’re not sure how they look. They’re not able to interact usually in a one-on-one situation with the health care providers to get their questions answered. So there are a whole group of sources of stress for distance caregivers that are not necessarily applicable to local caregivers.

So, we then took the theoretical underpinnings that we knew had been effective for local caregivers and we then made modifications so that the content and the delivery and the form of delivery met the needs that we knew existed for the distance caregivers. So we sort of melded those 2 together.

We then did a pilot test of the video conference intervention in the exam room, just to make sure that our conceptualization of how this would work and whether it be feasible—not only from the distance caregiver point of view, but from the health care provider’s point of view—because, of course, an important aspect of this was to not interrupt the natural flow of the clinic and for this not to be seen as something that would in any way disrupt the nature of the conversations or the nature of what was happening in those visits.

So you wanted it to be more complementary to what was already being offered?

Correct, and we wanted it to not be an obvious add-on. So, for example, how we delivered the intervention was as soon as the patient, and if they had a local caregiver, went into the exam room, we went in and set up the iPad, etc, had everybody all connected, so as soon as the oncologist walked into the room, they started into whatever their normal interaction would be. The oncologists knew each time that they were going into an exam room whether there was a distance caregiver that was going to be there. And part of the coaching that we did for people who got the full intervention was preparing them the first time they did a video conference so they sort of knew what to expect, knew how to think about the questions they wanted to ask ahead of time, etc, to try to facilitate that as well.

Now, that last part of your question, which again I thought was very interesting, is why has there not been an intervention like this tested before? There have been some interventions that have used it. I don’t know if you're old enough to remember, but the video phone, you know, we thought was going to be the future and using phone conferencing, sort of. But the main reason that I think that this hasn’t been done in this population is that distance caregivers of patients with cancer have not necessarily been recognized as a distinct group of caregivers who have a distinct set of needs. And because there hasn’t been a lot of extensive work done with this distance caregiver population, I think the opportunity hasn’t afforded itself for people to think about how could we try to meet the needs of those caregivers, knowing that those caregivers have needs that are different, in some ways, than the local caregiver.

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