A
new Boston-based research project is looking at the intersection of
chronic pain and early cognitive decline in older Black adults in the
Boston metro area. Goal to help older Black adults manage chronic pain and cognitive decline
A new Boston-based research project is looking at the intersection of chronic pain and early cognitive decline in older Black adults in the Boston metro area.
The effort represents a push by a study team at Massachusetts General Hospital to partner with communities in the research and to focus on education and strategies to help older adults manage chronic pain and memory-related problems — two issues that Fatima Fontes, a clinical research coordinator at MGH working on the study, said many don’t realize can be intertwined.
“While they’re sitting and dwelling on this pain that they don’t know why it’s happening or why it’s continuing, they’re … hindering their cognition by sitting and dwelling and not being active, not doing mind games — things we know are evidence-based to help cognition in older life,” Fontes said.
Over the course of the study — called the “Healthy Aging as Black Adults: In it Together” or the “HABIT” Stu1dy — the research team plans to work with about 400 Black adults over 50, working with them for a 12-week session of one of two programs that show potential for helping reduce chronic pain and cognitive decline.
The first, called “Active Living Every Day,” is an existing program designed to help identify barriers to activity in everyday life and develop habits around staying active.
The other, called “Mindfulness-based Cognitive Therapy plus walking” builds off existing programming that uses methods like meditation in addition to cognitive behavioral therapy, but in the design of Ana-Maria Vranceanu, one of the study’s principal investigators, also incorporates walking as a way to maintain and improve mobility.
The team is currently in the process of tailoring the materials for the mindfulness-based program to best serve the Black communities they are looking to reach.
A team approach
The
research is a close collaboration between Mass General Hospital and
community groups. Both Roxbury-based The Wellness Collaborative and
Cambridge-based Community Conversations: Sister to Sister have been
involved in shaping the study, its outreach and materials.
Leaders from both groups are co-principal investigators on the project.
That
kind of teamwork is signature for The Wellness Collaborative, which
works through the lens of an interdisciplinary framework, said Karen
Craddock, one of TWC’s executive directors. She serves as a co-principal
investigator in the HABIT study.
“How can we be a partner and a player in a particular way where research has influence and impact on our communities?” she said.
The
partnerships have helped shape the design of the study and will, the
team hopes, help bridge trust in recruiting participants for the study,
said Marie Nzeyimana, another clinical research coordinator on the
study.
Already, the
partnerships have guided the process of updating and tailoring the
materials for the program, including the “Mindfulness-based Cognitive
Therapy plus walking” handbook.
“Because
they work directly with the Black communities here in Boston and the
Greater Boston area, their input allows us to make sure that the
material we’re putting out is going to best serve the community itself,”
Nzeyimana said.
With
researchers of color working as leadership and staff on the study, the
team hopes to build trust between communities and researchers from an
institution that has a legacy of being largely white.
According
to numbers released by Mass General Brigham, across the hospital
system, employees in 2020 were about 65% white. A 2021 article in the
Journal of the American Medical Association estimated that, nationwide,
the health care industry was about 60% white. (Mass General Brigham is a
little more diverse than the general population of the state of
Massachusetts, though, which is just shy of 69% white).
“We
acknowledge that we’re coming from MGH and it’s still a white
institution, even now, despite many great efforts towards diversity,”
Nzeyimana said.
“Making
sure that we are providing competent care to our communities, our
community partners are really, really integral to that step for our
study.”
Craddock of
TWC said that including community voices in the work from the very
beginning, alongside an approach of community-based research, is an
important component for trust-building.
“We
know, historically, in the industry of health care, and in the arena of
clinical research, there’s an understandable and longstanding issue of
hurt and harm that has happened, particularly for Black and brown
communities,” Craddock said.
The
study also aims to physically get out of Mass General’s campus,
bringing the sessions for the two interventions into community spaces
like public libraries or community centers in Black communities in and
around Boston.
Fontes
also pointed to other work by Community Conversations, one of the
partner organizations, which included talking with community members in
spaces like hair salons.
“We’re
making sure these are areas people are familiar with. We’re trying to
keep them in their comfort zone, not making them feel like they have to
travel 45 minutes to downtown Boston to an MGH building to do these
group sessions,” Fontes said. “Rather, they’re right there in the
community where they’re familiar with, where they host their own
community events at.”
Study goals
Over
the 12 weeks of each intervention, the study aims to identify which
program is more effective at handling physical function, pain management
and memory challenges, and then revisit after six months to see how the
improvements have been maintained.
But
it is also focused on longevity and stability. A third goal is to train
community-based peer coaches and create a system through which the more
effective program can continue to be taught to older Black adults in
the Boston area, Fontes said.
“The
big point is to really to create a strategy and a stability plan to be
able to really implement the more effective program in the community way
after the research study is done,” Fontes said.
The community partner organizations have been instrumental in laying the groundwork for that, she said.
“They’re
the ones coming up with the stability plan and the implementation to
make this program more effective in the community after we’re done,”
Fontes said.
Craddock
said she views the work as going beyond a “one-anddone,” looking to use
the work to embed what is learned in the community and its resources.
“This
pathway to research is always considering the ‘who,’ alongside the
‘how,’ and always for the ‘how long,’ right?” Craddock said. “This is
about sustainability.”