Abstract Body: Introduction: An estimated 10-14% of all strokes occur in individuals under age 50, with an increase of ~15% from 2011-2022. Severe strokes in young adults affect the family unit quality of life. Caregivers of young stroke survivors often must work, raise children, and care for the patient who often has severe functional limitations. We explored unmet needs of young adult caregivers with severe stroke and their perspectives on post-stroke supportive interventions.
Methods: 19 caregivers of patients with severe stroke were recruited to participate in qualitative interviews as part of a large study to understand symptom burden and needs of patients and families following severe stroke. Two interviews were conducted at 1-3 months and 6-9 months post-discharge. Using thematic and comparative analyses, we analyzed interviews with a subset of 10 working aged caregivers (20 interviews total) focused on 2 questions: 1) How can healthcare providers support caregivers, and 2) What advice would you offer caregivers in a similar situation? Common themes were identified and grouped into categories focused on unmet support needs and potential interventions.
Results: Participants noted 3 areas of unmet needs: emotional, tangible, and cognitive (written and verbal information) support. They also indicated a need for a single point of contact beginning at hospitalization and continuing several months post-discharge. Participants were overwhelmed by the vast amounts of written information which was often discarded. Some respondents noted an affinity for technological contact in the form of electronic charts, etc. Others were unable to use the systems in place. Caregivers often had to make critical decisions based on little understanding of the daunting medical crisis and uncertain prognosis for recovery. Respondents advised patience, strong advocacy, and asking questions until understanding was achieved.
Conclusion: Caregivers’ desire for a single point of contact throughout hospitalization and recovery is at odds with the current fragmented model of care in most US hospitals. A nurse, social worker, or a highly trained volunteer could serve as in this role to provide anticipatory guidance related to unpredictability of stroke recovery, parcel tailored information, make requisite resource referrals, and help caregivers navigate the myriad systems, especially post discharge. Further study of the optimal methods to support young caregivers after stroke is warranted.