Wellness Counselor Helps Patients and Caregivers Connect and Cope
, by Brittany Cordeiro, NCI-CONNECT Program Manager
Alvina Acquaye helps people with brain and spine tumors and their caregivers cope with life stressors related to their diagnosis. She shares information about the educational and support group she started and the impact of her research.
Coping with a rare brain or spine tumor can make patients and caregivers feel isolated. They may also be unsure how to stay healthy and improve their well-being. Our NCI-CONNECT Clinic offers an educational and support group meeting called CARES (Coping, Advocacy, Relationships, Education, Support).
CARES is led by NCI-CONNECT Health and Wellness Counselor Alvina Acquaye. “It is important for people to understand how to balance their lives throughout their cancer journey and to know there are tools to help manage how they feel, think, and behave,” Acquaye says.
Acquaye earned her Master of Science in Counseling at the University of Houston-Clear Lake in 2010 and her Bachelor of Science in Psychology from the University of Houston in 2006. She is a Psychosocial Behavioral Specialist within NCI’s Neuro-Oncology Branch. She joined in 2016. She studies patient-reported outcomes, psychosocial interventions, and quality of life under the leadership of Terri Armstrong, Ph.D., Deputy Chief of NCI’s Neuro-Oncology Branch.
Helping others manage how they cope with life stressors is what propelled Acquaye to become a licensed counselor. Being part of research that collects information to understand the patients perspective is an added layer that Acquaye finds rewarding. It was also the catalyst in initiating CARES.
“We have learned so much by simply asking people what life is like before, during, and after treatment,” Acquaye says. Importantly, people with rare brain and spine tumors face unique challenges. Most struggle to connect with others with a similar diagnosis and find educational information about living with their disease.
Understanding Quality of Life Data
Acquaye helps coordinate and analyze data from the Outcomes and Risk Project, which launched in 2012 in ependymoma, a rare central nervous system (CNS) tumor. The project includes two online surveys that ask about symptoms, diagnosis, treatment, and current health status. The surveys also ask about family and medical history and environmental exposures.
Acquaye has been part of the project since its inception. Findings from the project were published in Cancer in 2016. The findings were the largest reported in adults with ependymoma to date. They learned that patients experience significant symptoms and impairments both when they are in treatment and have completed treatment. Almost half of the 246 participants surveyed could not return to work after treatment finished. And over one-third of the patients were unsure of the grade of their tumor.
The impactful results prompted Dr. Armstrong to expand the project to all rare CNS cancers at NIH. Patients can participate in the surveys online or when they visit the clinic as part of the Natural History Study. Acquaye continues to study the survey results.
In 2018, she published in Neuro-Oncology findings on body image dissatisfaction as reported by patients with rare brain and spine tumors. She found that 28% of patients expressed a hindrance to their lifestyle, including altered mobility, independence, activity, and changes in relationships. Participants described symptom effects, such as weight gain, fatigue, pain, vision changes, contributing to dissatisfaction throughout their disease. Specific changes in appearance, like hair loss, indentation on head, skin dryness, were also problematic factors affecting adjustment and coping.
The results offer insight from patients on the physical and mental factors they face regarding their body image and how it affects their life. Understanding patient concerns allows for a group like CARES to provide tools to help improve negative feelings, such as feeling ashamed or self-conscious, and overall quality of life.
Participating in CARES
Patients and caregivers have the opportunity to participate in CARES when they visit the NCI-CONNECT Clinic. It is a group meeting that brings together people with a similar diagnosis. During CARES, Acquaye presents a monthly educational topic relevant to the patient experience and then opens it for group discussion.
Topics include stress and anger management, coping with illness, and self-care areas like physical care, relationship building, and spirituality. Acquaye provides tips, tools, and strategies to help people manage what they are going through. This may include positive coping strategies such as guided imagery and deep breathing or ways to recognize and manage negative feelings before reacting. A lot of tools people can use in their daily routines.
Patients and caregivers learn and then share their experience in a closed environment with people they know will understand.
“Often, after the group meeting, I see people sitting together in the waiting areas still talking and interacting, and that connection is really what we hope to achieve,” Acquaye says.