Michelle R Caunca1,2,3, Marialaura Simonetto2, Gregory Hartley4, Clinton B Wright5, Sara J Czaja6. 1. Division of Epidemiology and Population Health Sciences, Department of Public Health Sciences, Miller School of Medicine, University of Miami, Miami, FL, USA. 2. Department of Neurology, Miller School of Medicine, University of Miami, Miami, FL, USA. 3. Evelyn F. McKnight Brain Institute, Miller School of Medicine, University of Miami, Miami, FL, USA. 4. Department of Physical Therapy, Miller School of Medicine, University of Miami, Miami, FL, USA. 5. National Institute of Neurological Diseases and Stroke, Bethesda, MD, USA. 6. Division of Geriatrics and Palliative Medicine, Weill Cornell Medical College, New York, NY, USA.
Abstract
PURPOSE: The purpose of this study was to design a mobile-friendly, Internet-based website, modeled on previously described websites for Alzheimer caregivers, to equip stroke caregivers and potentially reduce caregiver burden. DESIGN: A mixed-methods study was performed to design and test the usability of the Stroke Caregiver Support System (SCSS). METHODS: An iterative, user-centered design approach was employed in three phases: (I) Focus Groups, (II) Structured Interviews, and (III) Usability Testing. Phase I and Phase II provided information for the development of the SCSS website, whereas Phase III helped in gathering data regarding the usability and efficacy of the newly implemented SCSS website. FINDINGS: Qualitative data on caregiving and the content and design of the SCSS were obtained from focus groups and interviews. In the usability test, the nine caregivers who completed Phase III (78% women, mean age = 46, SD = 17) exhibited a high level of burden and depressive symptoms (median [Q1, Q3] Zarit burden score = 18 [16, 23], Center of Epidemiologic Studies-Depression Scale = 15 [8, 17]). Caregivers conveyed the usability of the SCSS but also expressed several needed improvements. CONCLUSIONS: Participants reported the value of the SCSS, but further refinements are needed to maximize its usability and potential efficacy. CLINICAL RELEVANCE: The SCSS has potential to reduce caregiver burden in stroke.
PURPOSE: The purpose of this study was to design a mobile-friendly, Internet-based website, modeled on previously described websites for Alzheimer caregivers, to equip stroke caregivers and potentially reduce caregiver burden. DESIGN: A mixed-methods study was performed to design and test the usability of the Stroke Caregiver Support System (SCSS). METHODS: An iterative, user-centered design approach was employed in three phases: (I) Focus Groups, (II) Structured Interviews, and (III) Usability Testing. Phase I and Phase II provided information for the development of the SCSS website, whereas Phase III helped in gathering data regarding the usability and efficacy of the newly implemented SCSS website. FINDINGS: Qualitative data on caregiving and the content and design of the SCSS were obtained from focus groups and interviews. In the usability test, the nine caregivers who completed Phase III (78% women, mean age = 46, SD = 17) exhibited a high level of burden and depressive symptoms (median [Q1, Q3] Zarit burden score = 18 [16, 23], Center of Epidemiologic Studies-Depression Scale = 15 [8, 17]). Caregivers conveyed the usability of the SCSS but also expressed several needed improvements. CONCLUSIONS:Participants reported the value of the SCSS, but further refinements are needed to maximize its usability and potential efficacy. CLINICAL RELEVANCE: The SCSS has potential to reduce caregiver burden in stroke.
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