Caregivers are often not included in, or adequately prepared during, the crucial discharge process following surgeries like bladder removal, leaving them unprepared for managing urinary diversions or stoma care at home.
Post-surgery, bladder cancer patients usually receive pamphlets of varying quality and usefulness. Medical staff rarely provide in-depth care instructions to patients and their caregivers before discharge from the hospital.
The Journal of Multidisciplinary Healthcare notes that a lack of post-hospitalization caregiver support and peer support also affects caregiver well-being. Caregivers reported having difficulty with ostomy management and fear of adverse events. Daily routine interruptions, concerns about intimacy, and financial strain were also factors that influenced caregiver well-being.
There is also limited caregiver-specific education on bladder cancer. While general cancer education (e.g., breast, lung) is widespread, information on bladder cancer is often less prominent.
There are organizations that specialize in bladder cancer and provide education specific to it, but most cancer organizations and awareness campaigns focus more on well-known, high-profile cancers.
The Bladder Cancer Advocacy Network has a series of free Bladder Cancer Basics Handbooks, including one specifically for caregivers.