Engaging caregivers: exploring perspectives on web-based health information.

Abstract

BACKGROUND: Informal or family caregivers are important contributors to health and health care and require support to sustain their role and address particular challenges. An experience-based health website may be an accessible, effective way to offer caregivers peer support and ultimately better equip them to care for themselves and their loved ones. OBJECTIVES: This study investigated how caregivers access and use information on the Internet about caregiving and their perspectives on the design and features of a new personal health experiences (PHEx) website. METHODS: This was a qualitative descriptive study that involved three focus groups of caregivers for a total of 16 participants in a university-affiliated hospital in Quebec. Thematic analysis was used with transcriptions of recorded sessions. RESULTS: With respect to how participants accessed and used health information, three themes emerged: searching for and choosing health websites, empowerment through the use of online health information, and concerns about health information on the Internet. In terms of their views on a health experiences website, the two main themes were: factors important for first impressions and perceived needs and expectations. CONCLUSION: Caregivers accessed and chose health information in a similar manner to other people but still offered additional insights regarding online health information retrieval, usage, and other perspectives, which will be helpful for future web-based initiatives that aim to provide support to caregivers.