Objective: Neobladder or orthotopic bladder surgery offers definitive treatment for invasive bladder cancer while maintaining normal urinary sphincters. Little research exists about the experience despite increasing numbers of affected people. The purpose of this study was to describe the lived experience of persons with invasive bladder cancer who undergo orthotopic neobladder construction.
Design: This qualitative research study used a phenomenologic design to explore the lived experience of having a neobladder.
Population, Sample, Setting, Years: A purposive sample of 14 men and women with an orthotopic neobladder were contacted and interviewed. The sample was drawn from a population of neobladder patients treated at three major tertiary care facilities in a large northeastern city. The data were collected and analyzed in 2000 and 2001. Informants were interviewed mostly in their homes.
Concepts/Variables Studied: Neobladder Experience
Methods: Data collection involved face-to-face interviews with audiotaping. Major and minor themes with clustered sub-themes were developed from analyses of transcribed narratives. All participants received informed consent.
Findings: Selected major themes included: Transitioning through the cancer diagnosis, Living with cancer as a lifelong possibility, Gathering information, Believing the neobladder was a good decision, Coping with the bladder cancer experience, Changing sexuality, Reflecting on smoking's impact, Living through the perioperative experience, Managing tubes and drains, Urinating with a neobladder, and Responding to incontinence.
Conclusions: Despite the negative experiences of cancer diagnosis and lengthy adaptation to the neobladder, informants were highly positive about the surgical option. Many themes were associated with physical repercussions of the innovative treatment, but also reflected changing relationships and self-image. The findings contribute to the small body of nursing knowledge on the neobladder experience.
Implications: Nurses, other health care professionals, and potential patients themselves should recognize the multiple components of the impact of bladder cancer and bladder reconstruction on quality of life. The neobladder experience requires adaptation to a new normal but is generally viewed as a highly positive choice.
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