OBJECTIVES: Bladder cancer (BC) is the sixth most common cancer in the US; the prognosis for patients with locally advanced or metastatic BC is very poor. Few studies have assessed its burden on caregivers. This study aimed to characterize difficulties and unmet needs of caregivers for patients with locally advanced or metastatic BC as reported on social media.

METHODS: US caregiver testimonials were collected from social media posts between January 2015 and April 2021 using specific terms for locally advanced or metastatic BC. These were qualitatively analyzed to identify caregiver difficulties and unmet need until saturation.

RESULTS: Of 1214 testimonials from 679 caregivers on 72 social media sources, 423 were randomly selected and analyzed until saturation. From those that reported age-related data (<15% of testimonials), most caregivers were women (83.2%) with a mean age of 35.4 years, whereas the reported mean age of patients was 67.2 years. A total of 177 testimonials that expressed ≥1 caregiver- or patient-centered difficulty were identified and classified into a list of 36 types of challenges. The main difficulties related to the caregivers’ psychological impact throughout the patient journey (26%), the desire to share experiences among peers/support groups (15.8%), and the fear and management of patients’ adverse events (12.4%). Other major difficulties expressed included the specific psychological burden of end-of-life support or grief work (10.2%), the daily impact of being a caregiver (relocation, time consumption; 9.6%), stress due to screening and diagnostic delay (7.3%), and the change in relationships between patients and caregivers (5.1%).

CONCLUSIONS: Qualitative analysis of social media testimonials from caregivers of patients with BC in the US provided insights on the substantial psychological impact and burden of care on them. Future research may explore BC caregiver well-being and quality of life as outcomes in quantitative studies.