The Internet as a source of health information: experiences of cancer survivors and caregivers with healthcare providers

Abstract

Purpose/objectives: To describe the experiences of cancer survivors and caregivers with healthcare providers in the context of the Internet as a source of health information.

Research approach: Qualitative description.

Setting: Online cancer communities hosted by the Association of Cancer Online Resources.

Participants: Purposive sample of 488 cancer survivors, with varying cancer types and survivorship stages, and caregivers.

Methodologic approach: Secondary data analysis using Krippendorff's thematic clustering technique of qualitative content analysis.

Main research variables: Survivorship, healthcare relationships, and the Internet.

Findings: Disenchantment with healthcare relationships was associated with failed expectations related to evidence-based practice, clinical expertise, informational support, and therapeutic interpersonal communication. Survivors and caregivers exercised power in healthcare relationships through collaboration, direct confrontation, becoming expert, and endorsement to influence and control care decisions.

Conclusions: Disenchantment propelled cancer survivors and caregivers to search the Internet for health information and resources. Conversely, Internet information-seeking precipitated the experience of disenchantment. Through online health information and resources, concealed failures in healthcare relationships were revealed and cancer survivors and caregivers were empowered to influence and control care decisions.

Interpretation: The findings highlight failures in cancer survivorship care and underscore the importance of novel interdisciplinary programs and models of care that support evidence-informed decision making, self-management, and improved quality of life. Healthcare professionals need to receive education on survivors' use of the Internet as a source of health information and its impact on healthcare relationships. Future research should include studies examining the relationship between disenchantment and survivorship outcomes.