Tabitha Tonsaker. (2013). Caregivers and web-based health information: An exploratory qualitative study of information seeking, information use, and perspectives. McGill Family Medicine Studies Online, 08: e03.

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Abstract (English):

Background: With Canada’s aging population, increasing prevalence of chronic disease, and overburdened healthcare systems, there is a growing pressure on
family caregivers to manage the care of their family members or friends. The demands of caregiving, however, can be challenging and may result in caregiver
distress and an inability for caregivers to continue in their role. To help address this issue, interventions that are developed to support caregivers may contribute to
greater confidence, capacity and satisfaction with their role, as well as better outcomes for their care recipient. The Internet is one area that now plays a
significant role in information delivery and support services. Offering web-based support to caregivers may assist this population to provide quality care and remain in good health. In particular, online information based upon personal health and illness experiences (PHEx) could be particularly helpful for those populations, such as caregivers, that are isolated and lack support services. In order to provide optimal support and services to caregivers through web-based initiatives, a better understanding for how caregivers search for and use online health information is needed. Furthermore, it will be valuable to explore caregivers’ perspectives towards online PHEx information, as this may be an especially appealing and valuable means of information delivery for this population.

Methods: Three focus groups were conducted with a total of 16 people to explore how caregivers retrieve and use health information on the Internet, as well as their perspectives towards the structure, design, and content of an online PHEx website.

Results: 1) In terms of how caregivers retrieve and use online health information, three broad themes were identified: searching for and choosing online health information; empowerment through use of online health information; and concerns with health information on the Internet. 2) In terms of caregivers’ perspectives towards the structure, design, and content of a PHEx website, two broad themes were identified: factors important for first impressions of a PHEx website; and
perceived needs and expectations for the content presented on a PHEx website.

Conclusions: Caregivers offered key insights regarding online health information retrieval, usage, and other perspectives, which will be helpful for future web5
based initiatives that aim to provide support to caregivers. Two conceptual frameworks are proposed related to: 1) health information website retrieval and
usage, and 2) features important for a PHEx website on caregiving.