Blood cancer caregivers' communication with clinicians about online cancer information

Adult children caring for a parent with cancer often assume the role of a "surrogate seeker," looking online for information regarding their parent's diagnosis, which they may then discuss with their parent's clinician. The current study aims to apply the previously developed "Stoplight typology" to explore caregivers' experiences discussing online health information with their parents' clinicians and factors associated with each response type within the typology.

We conducted an online survey of adult children caring for a parent with a blood cancer about their experiences communicating with their parent and their parent's clinicians. We used regression analyses to examine the association between physician responses as categorized according to the stoplight typology with 3 caregiver communication measures assessing eHealth literacy, caregiver communication, and physician-caregiver and patient communication. Second, we examined the experiences participants had with clinician communication about online health information.

A total of 121 caregivers completed the survey. Over half reported clinicians giving green light responses, with fewer reporting yellow or red light responses. Lower eHealth literacy significantly predicted greater likelihood of red light responses, whereas higher self-reported communication skills predicted more green light and fewer red light responses; neither communication measure predicted yellow responses. Thirty-two percent did not discuss their most recent online search with clinicians, most commonly because they saw no need. Seventy-four percent had discussed online information with a clinician, and 56% of these encounters were coded as green light responses. Among caregivers who had been told not to search online, 77% continued to do so despite the clinician's discouragement.

The study findings provide support for the stoplight typology in a caregiver population. Although most clinician responses were engagement responses, results demonstrate that the rejection response is ineffective. Future research could examine caregivers who reported lower eHealth literacy to target for future intervention.