Abstract WP432: Stroke Survivor and Informal Caregiver Involvement to Address Mental Health in Stroke Recovery

Abstract

Background and Purpose: Stroke survivor (SS) and informal caregiver ([IC]; e.g., unpaid spouse) mental well-being are connected with symptoms of psychosocial distress negatively affecting both. The purpose of this study was to implement the principles of patient-centered measurement by working with a team of SS, IC, and researchers to explore what mental health needs matter to a cohort of SS and IC. Methods: An 18-question mental health survey was created with input from 2 SS, 2 IC, and experts in neurology and nursing and distributed to community-dwelling SS (n=26) and IC (n=14). Subsequently, two semi-structured group interviews were conducted. Interviews were stratified by role (n=7 SS and n=3 IC) to attain homogeneity in order to encourage open dialogue. Results: Among 40 SS and IC, 65% were SS and 35% were IC with a mean age of 62 years. Overall, frustration (69%), stress (64%), worry (47%), anxiety (42%), and depression (31%) were the predominant mental health needs identified among both groups. Both SS (46%) and IC (46%) equally reported intolerant or close-minded cultural backgrounds to mental health issues. The majority of SS and IC identified peer-support and support groups as essential aspects when addressing mental health support during the stroke recovery period. Conclusions: This survey identified a number of mental health issues that matter to SS and IC. Our results raise the need to focus on interventions that will address patient-centered mental health outcome measurements that reflect what matters to the SS and IC and incorporate these patient and caregiver centered outcomes in stroke recovery clinical trials.