Sarah Iribarren1, Samantha Stonbraker2, Niurka Suero-Tejeda2, Maribel Granja3, José A Luchsinger4, Mary Mittelman5, Suzanne Bakken2,6, Robert Lucero7,8. 1. a Department of Biobehavioral Nursing and Health Informatics , University of Washington , Seattle , WA , USA. 2. b Columbia University School of Nursing, Columbia University , New York , NY , USA. 3. c National Center for Children in Poverty , Mailman School of Public Health, Columbia University , New York , NY , USA. 4. d Departments of Medicine and Epidemiology , Columbia University Medical Center , New York , NY , USA. 5. e Departments of Psychiatry and Rehabilitative Medicine , New York University School of Medicine , New York , NY , USA. 6. f Department of Biomedical Informatics , Columbia University , New York , NY , USA. 7. g Department of Family, Community, and Health System Science, University of Florida , Gainesville , FL , USA. 8. h Center for Latin American Studies , University of Florida , Gainesville , FL , USA.
Abstract
PURPOSE: To identify the information and communication needs of Hispanic family caregivers for individuals with Alzheimer's Disease and Related Dementias (ADRD) and the manner in which online tools may meet those needs. METHODS: We conducted 11 participatory design sessions with 10 English- and 14 Spanish-speaking urban-dwelling Hispanic family caregivers and gathered data using a survey, collage assemblage, and audio and video recordings. Four investigators analyzed transcripts of audio recordings with a coding framework informed by several conceptual models. RESULTS: Participants had an average age of 59.7 years, were mostly female (79.2%), and had cared for a family member with ADRD for an average of 6.5 years. All participants accessed the Internet at least once a week with 75% ≥ daily. Most used the Internet to look up health information. All participants reported caregiver attributes including awareness of the disease symptoms or behaviors. The majority reported information needs/tasks (91.7%), communication needs/tasks (87.5%), and need for online tools (79.2%). CONCLUSION: Hispanic caregivers of individuals with ADRD reported key information and communication needs/tasks. Only Spanish-speaking participants reported Internet and technology use deficits suggesting the requirement for further technology support. Data show a need for online tools to meet the needs of caregivers.
PURPOSE: To identify the information and communication needs of Hispanic family caregivers for individuals with Alzheimer's Disease and Related Dementias (ADRD) and the manner in which online tools may meet those needs. METHODS: We conducted 11 participatory design sessions with 10 English- and 14 Spanish-speaking urban-dwelling Hispanic family caregivers and gathered data using a survey, collage assemblage, and audio and video recordings. Four investigators analyzed transcripts of audio recordings with a coding framework informed by several conceptual models. RESULTS:Participants had an average age of 59.7 years, were mostly female (79.2%), and had cared for a family member with ADRD for an average of 6.5 years. All participants accessed the Internet at least once a week with 75% ≥ daily. Most used the Internet to look up health information. All participants reported caregiver attributes including awareness of the disease symptoms or behaviors. The majority reported information needs/tasks (91.7%), communication needs/tasks (87.5%), and need for online tools (79.2%). CONCLUSION: Hispanic caregivers of individuals with ADRD reported key information and communication needs/tasks. Only Spanish-speaking participants reported Internet and technology use deficits suggesting the requirement for further technology support. Data show a need for online tools to meet the needs of caregivers.
Entities:
Keywords:
Alzheimer’s disease and related dementias; Information needs; caregiver; communication needs; self-management
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