Information, communication, and online tool needs of Hispanic family caregivers of individuals with Alzheimer's disease and related dementias.

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.

Hispanic Dementia Family Caregiver's Knowledge, Experience, and Awareness of Self-Management: Foundations for Health Information Technology Interventions.

PURPOSE: As a first step toward developing a web-based Family-Health Information Management System intervention, we explored Hispanic dementia family caregiver's knowledge, use, and awareness of self-management principles and skills to address health and health care needs for themselves and the person with dementia (PWD). METHOD: Twenty caregivers and 11 caregiver counselors attended an English or Spanish language focus group ranging from 4 to 6 participants. We conducted a directed content analysis informed by Lorig and Holman's conceptualization of self-management. RESULTS: A complement of six skills (i.e., problem solving, decision making, resource utilization, patient-provider partnership, action planning, and self-tailoring) to achieve one of three tasks (i.e., emotional, medical, and role management) can fully represent Hispanic dementia family caregivers' ability to self-manage health and health care needs. While not prominent in our study, caregivers and caregiver counselors pointed out existing and potential uses of personal consumer technology to schedule reminders and search for resources. DISCUSSION: A broad conceptualization of self-management may be necessary to understand Hispanic dementia family caregiver's ability and needs to address emotional, medical, and role challenges of caregiving. CONCLUSIONS: These findings and advances in the use of consumer health information technology support the development of self-management caregiver interventions.