Young Adults with Stroke: Need for Support and Post-acute Care Services

Authors: Shilpa Krishnan PT, PhD^1,2,3, Roger L. Brathwaite MBA², Kelly Campbell MSEd²

Affiliations: ¹ Division of Physical Therapy Emory University Atlanta GA² Young and the Restless Peer Engagement Group, Atlanta GA ³ The Board of Medicine, Pittsburgh PA

 

The fastest-growing population of those with stroke is between 35-50 years. There has been a 44% increase in young Americans hospitalized due to a stroke since 2010. Stroke is the fourth leading cause of death in Georgia, and a little less than 1 in 5 stroke deaths occur in individuals less than 65 years of age. Young adults with stroke are in the prime of their careers, juggling mortgages, caring for children and aging parents (sandwich generation), and unable to work. Nearly one-third of people who have a stroke before age 50 are still unable to live on their own a decade after their stroke. Long-term prognosis is particularly important in this age group as they have a long life expectancy.

Young and the Restless of Atlanta (YnR) is a support group for young adults with stroke and was established in January 2019. Since February 2020, the YnR support group has partnered with Krishnan’s research team at Emory University. Our leadership team includes clinicians and academic partners (Shilpa Krishnan, a physical therapist and health services researcher from Emory University), patient partners (Roger Brathwaite, Kelly Campbell), and students from Emory University. Roger Brathwaite, a young Black stroke survivor, had his first stroke at the age of 44, and Kelly Campbell, a non-Hispanic White, had her first stroke at the age of 41. YnR is registered with the American Stroke Association and Brain Injury Association of Georgia. Braithwaite and Campbell serve on the board of directors for the Brain Injury Association of Georgia. YnR partners and engages with young adults with stroke, people with traumatic brain injury, caregivers, healthcare providers, industry partners, advocacy groups, and state and local organizations. As of March 25, 2022, the YnR Facebook group comprises 750 members, and the YnR Newsletter has 188 registered members.

Monthly meetings: The monthly meetings provide information on health outcomes, research innovations, and a space for the members to connect and share their journey. Since the COVID-19 pandemic, the monthly sessions are conducted virtually via Zoom. The leadership committee (Krishnan, Braithwaite, Campbell) convenes each month to develop an agenda and identify guest speakers for the monthly meetings. The guest speakers are identified based on the needs of the attendees, as discussed in monthly meetings. Each monthly meeting is divided into three parts; first, the leadership team welcomes the attendees and provides monthly updates on YnR planning, upcoming events, and opportunities to collaborate on research studies, industry, or media partners. Then Krishnan’s research team students moderate the guest speaker’s session. In conclusion, the attendees are asked to share their experiences in a fun and engaging manner where they share “two brags and three drags.”

Time and location: YnR group convenes via Zoom every third Thursday between 6:30 pm and 9:00 pm. Click here to join. Young adults with stroke, caregivers, and allies are welcome to join YnR and contact the YnR leadership team via email.

Student leaders: The student leaders take on a major role to organize the monthly sessions. The students develop the flyers, post the flyers on social media, moderate the guest speakers, provide technological support to speakers and attendees, conduct a monthly raffle, record the guest speakers’ session, edit the session to remove any identifiable patient information, and upload it to YnR’s YouTube page as an “unlisted video,” and write meeting minutes. Justin Joseph, an undergraduate research student, reflects that his engagement with YnR helped him uncover systemic issues related to accessing post-acute care services, even as a student

Member Retention: To enhance retention among young adults with stroke and community partners, Krishnan’s research team sponsors a monthly raffle where one attendee wins a gift card. The monthly raffle is made possible with the help of grant funds that Krishnan has received, which include Community-Engaged Learning grants from the Center for Faculty Development and Excellence at Emory University. The goal of this grant is to assist Emory faculty in enhancing community-engaged pedagogy, addressing critical community needs in the metro Atlanta area, and preparing students to better engage with the community.

Industry partners: The YnR support group has greatly benefitted from the industry partners. Technology is increasingly being utilized for rehabilitation and tracking health-related parameters. Often, industry partners provide YnR members early access to technology that benefits the health and wellbeing of our members. We are currently partnering with Apollo Neuroscience, Inc on their wellness wearables. 

Research and Dissemination: Justin Joseph, an undergraduate honors student, has developed research projects to understand the epidemiology, risk factors, and symptomology among young adults with stroke and is currently working on his honors thesis. Justin presented the preliminary findings at the Southeast Regional Clinical and Translational Science Conference in 2022. Krishnan’s work uncovering the unique needs of young adults with stroke received the 2021 Poster Award from the Community Engagement Forum, Georgia Clinical & Translational Science Alliance.

Key insights:

• The support group catered to young adults with stroke helps them connect with someone similar in age, sex, and race and equips them with coping skills and social networks.
• Young adults with stroke present with unique risk factors such as patent foramen ovale, Fabry’s disease, and the use of oral contraceptives.
• The high prevalence of the “undetermined” subtype indicates a need for further research into the etiologies of young stroke.
• Young adults with stroke often present unique needs such as mental health deficits and challenges in returning to work.
• Young adults with stroke are often discharged without any post-acute care services, and efforts need to be made into overcoming the barriers to accessing rehabilitation at affordable costs.
• The existing interventions must be adapted to young adults with stroke.
• Educational opportunities on symptomology and services for young stroke survivors must be provided.
• There is a disconnect between younger survivors and medical professionals partly due to the shame/blame stigma attached to young stroke survivors.
• There is a need for greater insight into the impact of stroke among young adults with stroke.

Contact information:

Shilpa Krishnan, Shilpa.krishnan@emory.edu
Young and the Restless: ynratlanta@gmail.com
Roger Brathwaite  roger.l.brathwaite@accenture.com
Kelly Campbell kellymc620@gmail.com

Conflict of interest: Shilpa Krishnan, PT, Ph.D., serves as a clinical research consultant for the Board of Medicine and evaluates the effectiveness of wearable technologies among various patient populations.