Of an estimated 65 million Americans who provide some type of care to an ill family member, about 7 million live at least an hour from the relative they're caring for.
The issue, then, is how to get these "distance caregivers" in the room when doctors meet with their patients and local, hands-on caregivers for exams and to discuss treatment.
"Finding ways to bring the distance caregiver into the health-care conversation has been difficult and stressful for those far away," said Sara Douglas, associate professor at Case Western Reserve University's Frances Payne Bolton School of Nursing.
So Douglas recently directed a small pilot project that allowed long-distance relatives to be part of that conversation through real-time videoconferencing.
Nursing school faculty conducted the study with seven families that had a relative diagnosed with an advanced form of cancer. The patients were being treated at University Hospitals Seidman Cancer Center in Cleveland.
Here's how the visits worked:
- A research nurse arranged a predetermined time to meet and talk to the distance caregiver. Pre-visit, the researchers made sure the out-of-town family member could connect to the hospital's information technology system. (Researchers utilized the hospital's highly encrypted videoconferencing system to protect the patient's privacy during the patient's examination.)
- The nurse prepped the out-of-town family member about would happen during the visit, and the important questions to ask.
- The out-of-town family member also had the opportunity to take a video tour of the treatment facilities by having the nurse hold the laptop to provide a sense of what the place was like. Questions could be asked at this time.
- On exam day, the nurse connected the out-of-town family member and brought the laptop into the waiting room to be with the family and give them time to talk.
- Then the nurse with the laptop followed the group into the exam room, where everyone heard and saw the doctor in real time. Again, there was an opportunity for questions.
Although the pilot study only connected each group during one visit, Douglas said the reactions were positive.
"The whole group traveled through the experience together," she said, "and the news wasn't always good. If families needed time be alone, they could have it."
The live video feed allowed for such important interaction.
Douglas was surprised to find another benefit: The local, more hands-on person responsible for the patient's care reported feeling a sense of relief by having the out-of-town family member present to hear and share what the doctor and patient had to say.
As the population ages, distance caregivers (out-of-town) are a growing demographic. And while not responsible for day-to-day care, about three-fourths of them make caregiving decisions, help arrange transportation, oversee finances and shop for their ill family member. These caregivers often struggle with job-related conflicts, family pressures and the financial issues involved in traveling to be with ill relatives.
"We may eventually find this is not for every family," she said, "but it holds promise for those families who do want to support each other when a loved one needs their care."
Douglas expects to build on what her research team learned with a much larger study involving many more participants.