Romane Millia Schook, MD out of BU University Medical Center in Amsterdam published “Why Do Patients and Caregivers Seek Answers From the Internet and Online Lung Specialists? A Qualitative Study” in JMIR. The goal of the study was to determine the reasons why lung cancer patients and caregivers search the Internet for information and ask lung specialists questions on the Dutch Lung Cancer Information Center.
This was a qualitative study via telephone interviews about medical information seeking of 5 lung cancer patients and 20 caregivers who posted questions on the web site.
The diagnosis of lung cancer drove the behavior to seek information and ask questions of experts. The need for knowledge was critical. It is worth noting that these participants were email, banking, and information seeking individuals prior to the diagnosis. So online activities were not new.
Information was sought during chemo, when there were changes in symptoms, disease progression, or needing to choose between two treatment options. The authors noted patients and caregivers would seek information once they had time to rest and think about what they were told or forgot what they heard. They sought to learn when they had to find a solution to a problem. Which matches why adults learn.
Respondents searched for information related to lung cancer yet specific to their situation, to better understand the disease, prepare for future visits, become aware of the disease course and trajectory. Additionally they sought answers to questions that were directly answered by their physician. To confirm and learn.
The author noted the differences between patients and caregivers which fit with our general understanding from various studies done by PEW etc. Patients searched for a minimal amount of information directed at symptoms and therapy and practical information regarding disease. Patients stayed away from end of life information. Finally patients sought hope in the form of others and support regarding disease management and care.
Caregivers were little information vacuums collecting copious amounts of knowledge. Though caregivers noted the need to be better informed about the disease it conflicted with the fact most information was difficult to understand or understanding it correctly. This group also sought information more frequently and specific to end of life and prognosis.
It was surprising to learn when respondents were asked why they were reluctant to ask their treatment specialist the same questions they sought answers to online respondents mentioned being ashamed discussing personal matters or indecencies within the office visit. Or they felt their specialists had little or no time between appointments. The convenience of using the Internet and the website was a factor to drive communications. Beyond convenience was a sense of open-mindedness, kindness, and empathy that respondents noted and valued in online communities.
On the down side for Internet usage specific to patients was the reality that there was a vast amount of information and that the greater the amount of information it took focus away from staying positive. (More is not better.) There does exist a tension between the knowledge the caregiver is finding and learning and the patient. That tension tends to focus on sharing too much with a patient and provoking a confrontation. From my caregiving experience I had to walked into that buzz saw when I shared information that did not add to hope.
The present study adds knowledge to the information-seeking behavior of lung cancer patients and their caregivers during the lung cancer treatment trajectory and their reasons for doing so. Strikingly, the majority of respondents were caregivers. Our findings show the coping strategies of caregivers and patients towards managing lung cancer.
The more we know and learn how patients and caregivers approach knowledge acquisition and how they process it the better we can be in delivering learning to these problem solvers. There uptake of knowledge and its application to their lives will be the driving force in changing healthcare.