Support for Family Caregivers Continues with CLARE

While living longer brings opportunities for continued relationships, education, and experiences, it also creates an aging population whose health and mental wellbeing often require at-home caregivers. Older adults need care and support, especially after they’ve experienced a medical event that requires temporary in-patient care. The Duke Elder Family/Caregiver Training (DEFT) Center was created to prepare and empower individuals in their role as caregivers by offering them face-to-face training at the time of the patient’s discharge, with the goal of reducing hospital readmissions and avoiding trips to the emergency room.

The DEFT program was funded in 2017 by The Duke Endowment. But in 2020, the Covid-19 pandemic strictly limited people other than patients in the hospital, so the work needed to change, said Associate Professor Cristina Hendrix, DNS, GNP-BC, FNP, FAAN, director and founder of DEFT. “It was impossible for us to continue our training face-to face,” Hendrix said of the original DEFT model. “We needed to pivot our caregiver training.” After some trial and error, including an attempt to send training videos via email, Hendrix is leading a new study funded by the Duke Roybal Center that introduces a digital tool called Communication, Learning, Advocacy, Resources and Expertise (CLARE) to investigate the feasibility of using an app to train and support elder caregivers.

“We had a hard time with caregivers complying with our request to click the link in the email,” Hendrix said. They didn’t have time to check email, or found the videos awkward learning tools. When operational, DEFT was an in-person program showing caregivers how to perform physical tasks like wound care and subcutaneous injections, as well as how to manage follow-up appointments and identify red flags that would signal the need for immediate medical intervention. That type of training turned out to be difficult to do via email, Hendrix said, so they pivoted again, to what eventually became the CLARE app.

“These caregivers were responding to our texts, so maybe texting them or creating an app that they can access through the phone and communicating with them verbally will be a more effective way to promote caregiver training and support,” Hendrix said regarding how the idea for the CLARE approach came about. CLARE hopes to examine the effectiveness of using an app for training caregivers and offering them support on their journey with their loved one. “The trial focuses on caring for patients with Covid because training materials already exist for that,” Hendrix said noting the study is really looking at the efficacy of the tool itself rather than the content at this point.

Recruitment for CLARE started in October, and the goal is to include 50 people in the study, ages 45 and older, caring for patients 65 and older. The pilot will develop open-ended questions to assess caregivers’ experiences using the phone app. Eventually, the app could be used to support caregivers helping patients not just in discharge situations, but those dealing with chronic diseases that have high incidence of hospitalization. With the continued shortage of health care providers and a growing population of aged people who rely on at-home caregivers, proper training and support can make a difference in the outcome of the patient, the efficacy of the caregiver, and even potentially reduced health care costs.

“This study is a product of our experiences that we have collected beginning with my program of research and caregiver training and support, including the DEFT program,” Hendrix said. Ultimately, the intent of CLARE is the same as DEFT; to guide caregivers as they take on the task of caring for their loved one at home. “My primary intent when I started this program was to support family caregivers in decreasing their level of distress because in the long run, they will become patients themselves if they’re not supported on this stressful journey.”