Cognitive impairment can occur in as many as 40 percent to 70 percent of individuals with multiple sclerosis (MS), a potentially disabling disease of the brain, spinal cord and optic nerves — the central nervous system (CNS).
Although the exact cause of MS is unknown, we do know that something triggers the immune system to attack the CNS. This results in damage to myelin, the protective layer that insulates nerve fibers, and it disrupts signals to and from the brain. The interruption of these communication signals causes unpredictable symptoms, including numbness, tingling, memory problems, pain, fatigue, blindness and/or paralysis. Individuals’ experiences of MS differ, and these conditions or symptoms may be temporary or long-lasting.
Few studies have considered the learning of music in people with MS, in particular the possibility of using the learning of music to improve cognition. Assistant Professor, Carolyn Phillips, PhD, MSN, RN, is conducting research on music learning versus music listening to improve cognition in people with MS. For the music learning component, she has created an online intervention to help teach individuals how to play the ukulele.
As both a nurse and a performing musician, Phillips is uniquely situated to design and implement innovative interventions that combine the use of narrative writing, storytelling and music to improve psychosocial well-being in patients and caregivers.
In a collaboration between the School of Nursing and Dell Medical School, Phillips is working with Shelli Kesler, PhD, Dr. Mary Louise Adams Endowed Professor in Oncology Nursing and director of the brain health neuroscience lab, to use functional near-infrared spectroscopy (fNIRS) to explore the potential effect of music learning on cognition. fNIRS is a noninvasive imaging technique that employs nearinfrared light to determine the relative concentration of hemoglobin in the brain, given differences in hemoglobin’s light absorption patterns. Patients wear a headband that shows prefrontal lobe activity and the team will evaluate whether certain patterns of brain activity can predict who will show improved cognition following this type of intervention.
“What we’re hoping to understand, Phillips said, is whether “learning to play music can help improve cognition. Looking at different things, like memory, processing speed, and decision-making, we are interested in learning if music can improve cognition. We’re also wanting to know if implementing this kind of intervention is feasible for people with MS, as they can struggle with hand movement, strength and neuropathy.”
At some point, cognitive impairment affects the majority of those diagnosed with MS, so novel interventions that help engage their brains in different ways are important: “Music reaches all parts of your brain, and hopefully, that can be used as evidence as to why this type of intervention is beneficial,” Phillips said.
Music can also have an impact on emotional well-being. Playing an instrument and listening to music brings joy. According to Phillips, it’s hard to feel sad when playing the ukulele — it’s a happy instrument.
Phillips’ participants receive a series of songs they can play for their family, such as “Happy Birthday” and others that enable them to take what they learn and engage with their loved ones.
“When people connect with music, they open up in a different way,” Phillips said. “When playing music, the conversation is not focused so much on talking about emotions, but rather it just happens organically. People start telling their stories as they connect to the music. If we find this intervention effective, I think it would be lovely if self-help groups could add this kind of element.”
Phillips is also working on a project that started when she was a postdoctoral research fellow at Dana-Farber Cancer Institute and Harvard Medical School. In this research, she is examining the impact of oncology nurses’ and family caregivers’ storytelling through music.
In both groups, Phillips is looking at the use of storytelling through music to help individuals process grief and loss. Oncology nurses, for example, can care for people for many years during which they develop relationships with them, and they experience high levels of grief and loss in their work.
Nurses, Phillips said, aren’t taught how to cope with work-related emotions. In her four-week online writing workshop, participants write their stories. Often these stories are about the people nurses have cared for and how they impacted the nurse’s life. As the nurses write the stories, they discover that they are still carrying emotions from those experiences.
After the writing workshop, Phillips pairs each individual with a songwriter, who then turns the story into a personalized song. A final performance of the stories and songs together informs a collective space to honor the nurses’ work, in which the nurses recognize a shared experience that unites them.
In her preliminary studies, Phillips’ intervention mitigated oncology nurses’ loneliness and improved their self-compassion and sleep. She also found a trend toward reduced burnout and compassion fatigue.
Funded by St. David’s Center for Health Promotion and Disease Prevention Research in Underserved Populations, in a second study to implement storytelling through music with family caregivers, Phillips is working with bereaved cancer parents who have a lost a child to cancer between the ages of zero and 39 years.
In this research, individuals tell their stories in a group setting with other bereaved parents. The study is co-led by a bereavement counselor, as well as music therapists who contribute to the songwriting component.
“We’re looking at helping them tell the stories of their children and creating a legacy piece for them,” Phillips said. “The story and song created can facilitate continued bonds and a connecting piece with their child, while also helping parents share their stories in a safe space and find meaning in life after such a profound loss.”
Mental health is the primary outcome of concern in these studies, as music creates a socially acceptable space to share emotions.
In her study with the oncology nurses, Phillips found that the nurses’ families often didn’t know what they were going through, and the nurses didn’t have the words to be able to communicate what they were experiencing.
The stories and songs gave them something tangible to share. Several oncology nurses shared their stories and songs with their spouses and families, who finally understood what the nurses were dealing with in their work and the impact it had on them.
Indeed, the music and the personalized song were like a carrot dangling in front of the individuals to get them to participate in the study: “Participants expressed that they wouldn’t have been drawn to only a writing intervention,” Phillips said, “but having a personalized song at the end was very appealing. By the end of the intervention, most participants learn that writing was a place for them to process their emotions, but it was the song that brought them to that place.” A special perspective that Phillips has learned from the nurses was that “the songs turned sad stories into something beautiful.”