Caregiver-Clinician Communication about Online Cancer Information: Presenter(s): Taylor Vasquez, University of Florida, United States. (April 2023)

• Record Type: Journal Article
• Authors: Fisher, Carla; Crowe, Alyssa; Johnson, Skyler; Sae-Hau, Maria; Weiss, Elisa; Bylund, Carma
• Is Part Of: Patient education and counseling. Volume 109(2023)Supplement
• Page Start: 127
• Publication Date: 2023-04
• Subjects: Patient education -- Periodicals; Health counseling -- Periodicals; Health education -- Periodicals; Counseling -- Periodicals; Patient Education -- Periodicals; Éducation des patients -- Périodiques; Counseling -- Périodiques; Éducation sanitaire -- Périodiques; 615.5071
• DOI: 10.1016/j.pec.2022.10.290
• Languages: English
• ISSNs: 0738-3991

Abstract

Abstract : Background: Caregivers often become "surrogate information seekers" when caring for an individual with cancer, educating themselves about cancer diagnoses and treatment options. Caregivers often accompany patients to clinical appointments and may be a main information source for them. Furthermore, they are often involved in treatment decision-making. Thus, understanding the experiences of these caregivers is important to help them best support the patient. Methods: An online survey was conducted of caregivers of a living parent with a blood cancer who was in treatment or had finished treatment within the past year (n= 121). Survey questions examined caregivers' experiences speaking with cancer clinicians about online information. Open-ended survey responses were coded using pre-developed coding systems. Intercoder reliability for the coding schemes was acceptable (Krippendorf's Alpha=.80, .73). Findings: 34% of respondents did not speak with a clinician about online cancer information during their most recent clinical visit. The most common reasons were that they had no need (n= 14, 35.90%), they had no appointment (n=6, 15.38%), or needed to save face (n= 6, 15.38%). Among those respondents that spoke with a clinician, 20% (n= 18), were advised not to look on the internet for information regarding cancer, 23% (n= 21) received a cautionary response to searching for information online, and 57% (n= 52) received an engaged, positive reaction from their clinician. Nearly 30% of participants reported a clinician advised them at some point not to look online for information, but of these 77% still proceeded to look for online cancer information pertinent to the patient's care. Discussion: Despite their clinician cautioning or advising against it, many caregivers proceeded to seek online information about cancer. Educational interventions and medical education programs for clinicians and trainees could enhance skills in identifying trusted online sources and initiating conversations with caregivers about information acquired online.