New Research at Shepherd Center Aims to Reduce Caregiver Burden, Improve Continuity of Care for Acquired Brain Injury

As part of its ongoing mission to improve the standard of care for people with acquired brain injury (ABI), Shepherd Center has launched a new research study to identify the most effective ways to help family members and other caregivers cope with the challenges of caring for people with brain injuries once they transition from the inpatient rehabilitation setting back to their home environment.

After leaving the hospital, people with brain injuries still face an array of physical, cognitive and psychological challenges, such as dizziness, pain, weakness, loss of memory and concentration, depression, irritability and anxiety, all of which can impede recovery. Previous research has shown – and experts agree – that having a reliable and engaged caregiver is one of the most important factors in optimizing ABI recovery.

But caring for someone with an ABI requires a tremendous amount of time and energy, and without proper support or relief, caregivers may fall into a pattern of self-neglect and succumb to anger, depression, feelings of isolation, resentment and even illness. Studies have shown that failing to adequately support caregivers can lead to poorer outcomes for people with ABIs and their family members.

“Caregivers are often ill-equipped to meet challenges that arise when a person with an ABI moves from inpatient rehabilitation to the home,” says Mike Jones, Ph.D., vice president of clinical research and assistive technology at Shepherd Center, and founding director of the Center’s Virginia C. Crawford Research Institute. “Many rehabilitation centers that treat people recovering from ABIs are still struggling to find the most effective methods to support caregivers and help extend positive outcomes.”

As part of a three-year grant, Dr. Jones and his team will provide the first head-to-head comparison of two programs designed to support caregivers of people with ABI following discharge. The first program, Building Better Caregivers, was developed by Kate Lorig, Dr.P.H., and colleagues at Stanford University and provides group support facilitated by peer mentors. These peer mentors are volunteers who have been through the recovery process before and who can counsel new caregivers on how to cope with the many difficulties of taking care of people with ABIs. They will receive in-depth training and orientation to help them be effective sources of support. The second program, Problem Solving Training, provides individualized support by a clinician, usually a rehabilitation or family counselor. Both programs consist of six sessions, which can be attended in person or by phone/Skype.

Previous research has shown both programs can benefit people with ABI and their caregivers, but to date, there is no data showing the relative strengths and limitations of these programs, or which is the more effective method for different subgroups of patients and families.

To address this knowledge gap, researchers at Shepherd Center will compare the impact of these programs on: 1) caregiver burden and depression, 2) caregivers’ level of “self-efficacy” (confidence in their ability to provide and sustain care to their loved ones), and 3) healthcare utilization (e.g., the number of return hospital or doctor’s office visits during the first six months post-discharge). Dr. Jones notes that this initiative builds on Shepherd Center’s previous work with people with spinal cord injuries, which clearly demonstrated the benefits of peer-to-peer support.

Dr. Jones stresses that caregiver burden should be pre-emptively addressed soon after the injury. He and his team plan to identify what types of interventions can support family needs during the acute and post-acute stages of recovery – well before the patient is discharged to go home.

“We hope to find ways to intervene early to avoid or reduce the significant caregiver stress and burden that can lead to adverse outcomes for these individuals and their families,” Dr. Jones says.

The study is funded by a $600,000 grant recently awarded to Shepherd Center by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), and aligns with its efforts to improve the economic, social and health-related well-being of family caregivers of people with disabilities.

For more information, contact Mike Jones, Virginia C. Crawford Research Institute, Shepherd Center. Email: mike.jones@shepherd.org. Phone: 404-350-7595.

Written by Amanda Crowe, MA, MPH