Stroke Survivors: Needs, Wellness and Warning Signs in a Stroke Support Group Population

Abstract

Aim: This study was designed to investigate needs of stroke survivors in stroke support groups, including their knowledge of warning signs, and the effectiveness of their care provider in acquiring rehabilitation services, from the perspective of the stroke survivor. Background: According to the Centers for Disease Control and Prevention (CDC), almost 800,000 patients have a stroke each year, with 140,000 patients dying annually. Survivors are at high risk of a second stroke. Patients may have a host of differing needs to both maintain wellness and acquire the necessary knowledge to identify and prevent a secondary stroke. Research about the perspective of stroke survivors in a stroke support group concerning their needs, caregiver satisfaction, and wellness, is limited and in need of further study. Design: A five-question pilot survey. Methods: This study was conducted in the Stroke Survivors Empowering Each Other (SSEEO) stroke support group, a national stroke support network. Questions asked about patient knowledge of stroke warnings signs, their wellness needs, and the helpfulness of their caregivers in acquiring both. The study had 52 participants from 80 total invitees, a response rate of 65%, evenly distributed from ages 20 to 83. Forty-two respondents were survivors of an ischemic stroke, while 10 were survivors of a hemorrhagic stroke. There were 25 women and 27 males who participated in the study, and all were computer-literate and active members of the stroke survivor network. Forty-eight of the participants directly responded while a caregiver aided four respondents in accessing the study. Members suffered from a broad range of disabilities, including motor and minor language deficits. Results: Patients reported a high level of knowledge of warning signs (95%); however only about half (53%) had ever had warning signs discussed with a care provider. Patients reported physical therapy (26%) and increased support group interaction (17%) as their primary needs. A majority of patients (52%) were somewhat or not-at-all satisfied with the assistance of their caregiver in achieving their wellness needs. Conclusions: Patients reported a general lack of satisfaction with caregiver information about warning signs and in achieving wellness needs. However, patients said that they knew the warning signs of a stroke irrespective of their caregiver helpfulness. Patients reported primary needs for physical, speech and occupational therapy. Clinical Implementation: Caregivers should consider increasing the amount of time spent discussing stroke warning signs with their patients. Caregivers should also consider attempting to ask stroke survivors as to their perceived needs actively and try to resolve them.