Deciphering the Signal From the Noise: Caregivers’ Information Appraisal and Credibility Assessment of Cancer-Related Information Exchanged on Social Networking Sites

Abstract

With the rise in the use of the Internet for health-related purposes, social networking sites (SNSs) have become a prominent platform for cancer communication and information exchange. Studies of cancer communication on SNS have mostly focused on understanding the quantity, content, quality, and user engagement (eg, likes and comments) with cancer-related information on SNS. There is less of an understanding of when and why people coping with cancer turn to SNS for cancer-related information, and how users appraise the credibility of cancer-related information obtained on SNS. In this study, we use data from in-depth qualitative interviews with 40 primary caregivers of pediatric patients with cancer to examine how cancer caregivers engage in information appraisal and credibility assessment of cancer-related information obtained on SNS. Findings show that cancer caregivers turned to SNS for cancer-related information because information on SNS was immediate, targeted in response to specific caregiver questions and concerns, and tailored to the specific information needs of cancer caregivers. Cancer caregivers evaluated the credibility of cancer-related information obtained on SNS through assessment of the SNS user who posted the information, frequency the same information was shared, and external corroboration. Findings have important implications for cancer communication and information interventions and point to elements of SNS cancer communication that can be integrated into health professional-facilitated communication and cancer information strategies.

“The stakes could not be higher”: A mixed methods study of parental social media use in pediatric oncology

“…Our findings regarding how parents appraise information exchanged on SM are consistent with other studies, which also concluded that people tended to trust those with similar experiences and perspectives as themselves and that repetition of the same information from different sources enhanced the perceived credibility of that information 7,28 . Misinformation was less pervasive a theme than we expected, but this may in fact have been anticipated by an earlier study, which found about two‐thirds of parent posts regarding childhood cancer are medically accurate 6 .…”

“…Families of children with cancer frequently turn to social media (SM) for information, psychosocial support and connection, and material and financial support; one study estimated that 80% of parents of young cancer survivors use SM daily 1–3 . Gage‐Bouchard and colleagues have done substantial work around parental SM use in pediatric oncology, defining categories of health‐related Facebook usage 2 (e.g., social support, advocacy, emotional strain), while other resarchers have explored the content of social support and the management of uncertainty via blogging by parents of children with cancer 1,4–10 . Contemporaneous studies have also identified unmet information needs among parents of children with cancer, including information regarding prognosis, late effects, and transition to survivorship, so it is perhaps not surprising that parents turn to SM to fill these gaps 11–13 …”

“…SM, defined by users’ ability to dynamically create and share content rather than merely obtaining information, does so in distinctive ways. A study of 40 parents of children with acute lymphoblastic leukemia (ALL) found that parents turn to SM to meet information needs because the information is immediate, targeted to their specific questions and concerns, and tailored to their roles as parents or caregivers 7 . One study that explored clinicians’ experiences with parents seeking health information online found that clinicians felt obliged to reallocate time in order to help parents better understand the concept of “evidence” in medicine and to respond to perceived critiques of their practices 15 .…”

Using Social Media for Peer-to-Peer Cancer Support: Interviews With Young Adults With Cancer

“…More representative and inclusive samples of young adults of varying ages, balanced for gender, and with a variety of cancer diagnoses are needed to understand unique needs and challenges. It would also be fruitful to contribute to emerging evidence [ 54 , 55 ] and investigate whether family and friends use social media in similar ways to support young adults with cancer in their lives or for their own caregiver support. Similarly, hearing from health care providers and clinical teams about their experiences recommending resources or using social media to support young adult patients is needed to better understand how and when peer support fits within clinical care [ 49 ].…”

Social media use and patient–provider relationships: Lessons for patients, caregivers, and healthcare providers

“…There are many advantages to enhanced access to information from increasingly varied sources. Cancer caregivers report that social media is an appealing source of cancer‐related information because it is immediate, targeted to specific questions or concerns, and tailored to the caregiver context 2 . In the case of pediatric medicine, and pediatric oncology specifically, caregiving often blends the lines between parenting and medical caregiving.…”