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

Abstract

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.