Paper: Experiences of Cancer Patients, Survivors, and Caregivers with Healthcare Providers in the Context of Online Health Information and Resources (40th Biennial Convention (October 31st- November 4th, 2009))

Tuesday, November 3, 2009: 1:15 PM

Maria C. Dolce, MA, RN, CNAA-BC, FACHE
College of Nursing, New York University, New York, NY

Learning Objective 1: Describe how the Internet, as a source of health information and resources, impacts the clinical encounter in cancer care for cancer patients, survivors, and caregivers.

Learning Objective 2: Formulate nursing strategies to support the consumer-provider relationship for cancer survivors and caregivers throughout their journey.

Significance and Background: Data from the Health Information National Trends Survey revealed an increase in seeking cancer information on the Internet. Cancer patients reported a healthcare provider as their preferred source of information during the first year of a cancer diagnosis; whereas, Internet usage exceeded healthcare providers as the preferred source of information for cancer survivors two years and beyond post-diagnosis. Little is known about how the Internet, as a source of health information and resources, impacts the clinical encounter between patients and healthcare providers in cancer care.

Purpose: The purpose of this qualitative descriptive study was to discover recurring themes regarding the healthcare consumer-provider relationship in the context of cancer online health information and resources.

Conceptual Framework: A qualitative descriptive approach was used to describe the experiences of cancer patients, survivors, and caregivers with healthcare providers in the context of online health information and resources.

Methods and Analysis: A secondary analysis of existing data from the Pew Internet and American Life Project. These data were analyzed using Krippendorff’s method of qualitative content analysis. Study sample (N = 1,680) included participants of online cancer support groups or mailing lists.

Findings and Implications: Thematic clustering of these data resulted in the emergence of recurring patterns: disenchantment with healthcare providers and failed expectations related to best research evidence, clinical expertise, informational support, and therapeutic interpersonal communication; consumers exercising freedom through collaboration, confrontation, verification, and being expert; and consumer values and preferences. Findings are contextualized within Rogers' Diffusion of Innovations Theory. Diffusion of health information is communicated through a social system of online cancer support groups or mailing lists and impacts the consumer-provider relationship as a decision-making unit. Consumers exercise their freedom or autonomy by exerting power and influence in their relationship with healthcare providers. Clinical encounters between consumers and providers are characterized by patterns of convergence and divergence related to cancer care decisions. Results inform a model of the ideal consumer-provider relationship in supporting cancer survivors and caregivers throughout their journey.

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