MAXIMIZING STROKE EDUCATION FOR CAREGIVERS
Lisa Knecht-Sabres , DHS , OTR / L , Kaitlin Marie Ryczek , OTD , OTR / L , Amanda Conway , OTD , OTR / L , Joanna Podosek , OTD , OTR / L
After a stroke , loved ones are often forced to take on a new and unanticipated role as a primary caregiver . Caregiving typically requires the acquisition of new skills , such as assisting with activities of daily living ( ADLs ), helping with functional mobility , and managing difficult emotions and behaviors . This process can be hard and overwhelming for individuals with no prior experience , especially when it is sudden and unexpected . The provision of information that addresses caregivers ’ needs and thoroughly prepares them to carry out the requirements of their new role is not only critical to the caregivers ’ sense of comfort , skill , and confidence , but has implications to the stroke survivors ’ quality of life as well . As experts in fostering participation in meaningful activities and roles , occupational therapy practitioners play a vital role in the educational process for stroke survivors and their caregiavers . Unfortunately , evidence suggests that practitioners are falling short in the provision of education which enhances a caregiver ’ s sense of confidence and competence in their new role ( Camicia et al ., 2018 ; Cheng et al ., 2016 ; Pastore et al . 2022 ; Roy , 2015 ; Chen et al ., 2016 ). Moreover , caregivers have expressed that the education process as well as the information supplied by practitioners is ill-suited to their needs and preferences , with dissatisfaction often related to the delivery of information , educational content , timing , and quality of communication between practitioners and caregivers ( Camicia et al ., 2018 ; Cheng et al ., 2016 ; Roy , 2015 ; Chen et al ., 2016 ).
DELIVERY OF INFORMATION
Caregivers have described the exchange of information as predominantly one-sided and that health providers readily offered large amounts of information without genuinely taking the time to listen to the input of those who will be playing a significant role in the patient ’ s life , health , and wellbeing ( Danzl et al ., 2016 ). They have also reported experiences of not knowing who to go to for specific informational needs ( Camicia et al ., 2018 ), poor attitudes from professionals during the recovery phase ( Shook & Stanton , 2016 ), and an overall perception of being a nuisance to providers who appear “ too rushed , stressed , or lazy ” ( Roy , 2015 ). While some caregivers have expressed satisfaction with obtaining adequate education from health care providers , most emphasized this outcome would likely not have occurred had they not actively sought out professionals with questions ( Roy , 2015 ; Creasy et al ., 2013 ). In fact , Creasy et al . ( 2013 ) stated caregivers characterized as less assertive during the educational process are typically less prepared upon discharge .
TIMING
Prior to discharge from rehabilitation , it is common practice for
1 Illinois Occupational Therapy Association | 2022 ISSUE 1
: practitioners to provide caregiver education all at once with the assumption that the caregivers are able to demonstrate what they have learned ( Banford et al ., 2001 ; Pastore et al . 2022 ). Additionally , these family encounters typically occured shortly before discharge and at a time when caregivers were given an abundance of information all at once ( Eames et al ., 2010 ; Pastore et al . 2022 ). With this process , caregivers found themselves in a state of information overload while anxiety levels were already high ( Cameron & Gignac , 2008 ; Pastore et al . 2022 ). This bombardment of information from the healthcare team has been found to be overwhelming and not retained post-discharge upon return to the home environment ( Allison et al ., 2008 ; Danzl et al ., 2016 ; Ghazzawi et al ., 2016 ).
EDUCATIONAL CONTENT
Studies have also revealed that caregivers are not prepared for the emotional aspects of caregiving such as managing the stroke survivor ' s emotions and behaviors , as well as their own stress ( Chen et al ., 2016 ; Wachters-Kaufmann et al ., 2005 ; Wenzel et al ., 2021 ). Due to high rates of depression in caregivers , emotional management is important . Unfortunately , many caregivers expressed concern for their mental health and the emotional management of their loved one ( Creasy et al ., 2013 ), yet , the provision of education regarding emotional
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