Telehealth Program Supports Family Caregivers of Patients With Brain Cancer

While there are numerous support services for patients with cancer, far fewer focus on the needs of caregivers. After realizing these needs, a group of researchers at the University of Alabama at Birmingham (UAB) created FamilyStrong, a telehealth support service for caregivers of patients who were recently diagnosed with grade IV brain tumors.

“They’re partners in care and delivering the majority of care in the home setting, and this is a very distressed group, often reporting their own mental and physical health suffering due to the care that they are providing,” said study author J. Nicholas Dionne-Odom, PhD, RN, ACHPN, FAAN, assistant professor at the UAB school of nursing and co-director of the Caregiver and Bereavement Support Services and UAB Center for Palliative and Supportive Care.

Family caregivers enrolled in the program were contacted by a palliative care nurse who performed monthly distress screenings, which were based on National Comprehensive Cancer Network (NCCN) patient screenings, adjusted for caregivers. Based on the results, the nurse would provide emotional, educational, problem-solving, and referral support.

“Providing this type of support is just an extension of what I see patient- and family-centered care,” Dionne-Odom said.

The majority of patients (79.3%) were spouses/partners to patients. Average age was 53.5, and more than half (62.3%) were female.

Common problems that caregivers wanted help addressing were:

• Managing their loved one’s health conditions and symptoms (51%)
• Coordinating care/services (21%)
• Planning for the future/advanced care planning (17%)

Dionne-Odom said that FamilyStrong could be applied to other cancers and disease types, as he and his team made it so that it is straightforward, quick, and easy to use by a nurse, social worker, lay navigator, or any other professional along the disease trajectory. In fact, they are now examining the tool in family caregivers of those with Alzheimers and dementia.

“The uptake and scalability is very high for many different cancer centers to quickly implement and not be too burdensome for them to do so,” he said.

Regardless of what disease the patient has, having a healthy and happy caregiver can lead to better outcomes overall.

“In general, data seems to indicate that there is a correlation between a relatively high-functioning, low-distress caregiver, and being able to provide higher quality care to patients,” Dionne-Odom said.

Reference

Dionne-Odom JN, Williams GR, Warren PP, et. Al. Implementing a clinic-based telehealth support service (FamilyStrong) for family caregivers of individuals with grade IV brain tumors. Journal of Palliative Medicine. Vol. 23, No. 3. February 2021. https://doi.org/10.1089/jpm.2020.0178. Accessed March 7, 2021.