“As COVID-19 forces separation from loved ones and increases anxiety for people with cancer and their caregivers, providing emotional support virtually is more important than ever. This study shows how effective videoconferencing interventions can be in improving the emotional wellbeing of remote caregivers, who in turn provide critical support for patients,” said ASCO President Howard A. "Skip" Burris III, MD, FACP, FASCO.
ALEXANDRIA, Va. — A videoconferencing intervention significantly reduced levels of anxiety and distress among “distance caregivers" who live more than an hour away from the patients with cancer they support, according to the results of a federally funded study.
Study at a Glance
Interventions to reduce anxiety and distress experienced by distance caregivers of patients with cancer
441 distance caregivers who lived more than 1 hour from their patient with cancer
Distance caregivers who received a three-part intervention — comprised of videoconference coaching; videoconference participation in patient-oncologist visits; and access to a distance caregiver-focused website — reported reduced anxiety and distress (19.2% and 24.8% respectively) between baseline and 4 months.
Interventions using technology, like video conferencing, can significantly reduce levels of anxiety and distress among “distance caregivers."
These findings have particular relevance during the COVID-19 pandemic as social distancing practices have increased the number of caregivers providing remote support for their loved ones with cancer. The study will be featured in the virtual scientific program of the 2020 American Society of Clinical Oncology (ASCO) Annual Meeting.
Distance caregivers report higher levels of distress and anxiety than caregivers who live nearby, which can negatively affect their employment, quality of life, and overall physical health. This distress and anxiety are often caused by uncertainty regarding the patient’s condition or a lack of first-hand information from clinical visits.
Approximately 20% of caregivers live more than 1 hour away from patients with cancer,i,ii and nearly a third of distance caregivers are the sole caregiver for their loved ones.iii,iv
Despite the unique challenges facing distance caregivers, no interventions have been developed specifically for this group until now.
To address these challenges, researchers developed a three-part intervention to support distance caregivers, comprised of monthly videoconference coaching sessions with a nurse practitioner or social worker, focused on providing information and support; videoconference participation in patient-oncologist visits; and access to a website with resources designed specifically for distance caregivers. Of the distance caregivers who received the full intervention (those in arm 1), 19.2% experienced significantly reduced anxiety and 24.8% reported reduced distress. In Arm 2, 17.3% had improvements in anxiety scores and 19.8% had improvements in distress scores.
“Distance caregivers experience a tremendous amount of anxiety and distress – often greater than people with cancer themselves,” said Sara L. Douglas, PhD, RN, lead author of the study, the Gertrude Perkins Oliva Professor in Oncology Nursing and Assistant Dean for Research at the Case Western Reserve University School of Nursing. “With COVID-19, the challenges that distance caregivers face are now the same challenges facing many local caregivers who can’t attend their loved ones’ appointments. Our video conferencing intervention shows that it’s possible to meaningfully reduce anxiety and distress for distance caregivers through fairly simple technology.”
About the Study
The randomized controlled trial was conducted at a large urban comprehensive cancer center, though distance caregivers in the study lived in a variety of settings. Participants were randomized to receive one of three interventions. Participants in arm 1 received 4 monthly videoconference coaching sessions with a nurse practitioner or social worker, focused on providing information and support; were able to participate in patient-oncologist visits via videoconference; and had access to a website with information specifically designed for distance caregivers. Arm 2 participated in virtual patient-oncologist visits and had access to the same website. Arm 3 had access to the website only.
A total of 441 patient-caregiver groups were enrolled. The average age of distance caregivers was 47 years; 71% were female, and 63% of caregivers were children of the patient. The average age of patients was 65 years; 60% were female, and 30% and 18% had gastrointestinal and hematologic cancers respectively. Of patients with solid tumors, 59% had stage-IV disease.
The researchers assessed changes in levels of distress and anxiety before and after the interventions using a questionnaire completed before randomization and at the end of the 4-month intervention.
Though providing online coaching sessions with advanced practice nurses or social workers may not be feasible for all cancer centers due to cost and resource limitations, the authors note that videoconferencing distance caregivers into patient appointments and providing web resources designed specifically for distance caregivers will still yield some improvement in distress and anxiety levels.
The researchers plan to test this intervention in other caregiver populations (e.g. patients with Alzheimer's disease). They also plan to work with healthcare providers to offer video conference technology to cancer patients with a distance caregiver.
This study was funded by the U.S. National Institutes of Health.
View the disclosures for the 2020 Cancer Communications Committee: https://www.asco.org/sites/new-www.asco.org/files/content-files/about-asco/pdf/2020-am-ccc-disclosures.pdf
View the disclosures for Dr. Burris: https://coi.asco.org/share/UK4-3LNB/Howard%20Burris
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