To explore patient perspectives of muscle-invasive bladder cancer (MIBC) on how the health care team and their social network can support them during their cancer trajectory.
Sixteen semi-structured interviews were conducted with MIBC survivors who underwent radical cystectomies at Ghent University Hospital. The interviews were audiotaped, transcribed verbatim, and analyzed with an iterative content analysis approach.
Information to support people affected by bladder cancer (BC) in several aspects of their disease trajectory (eg, shared decision-making and self-management of their urinary diversion) was most important throughout the interviews (although type and source of required information varied). The clinical nurse specialist was important for informational and emotional support because receiving sufficient information might help patients reduce emotional stress. People affected by BC are still reluctant to consult a psychologist, and several barriers were indicated for this. Also physical needs in the early postoperative phase could be reduced with appropriate information. Communication skills of clinicians in the hospital and knowledge of general practitioners about the important aspects of BC care are also important aspects that should be further optimized. Furthermore, peer support groups and family members can offer important support throughout the BC pathway.
This study provides an overview of how people affected by BC want to be supported by their health care team and their social network. This overview can serve as a basis to develop educational interventions for both patients and health care professionals to guide restructuring of BC pathways and can also be used to develop future intervention studies to improve BC outcomes.
Seminars in oncology nursing. 2021 Nov 07 [Epub ahead of print]
Elke Rammant, Valérie Fonteyne, Vincent Van Goethem, Sofie Verhaeghe, Anneleen Raes, Mieke Van Hemelrijck, Nihal E Mohamed, Karel Decaestecker, Ann Van Hecke
Department of Human Structure and Repair, Ghent University, Ghent, Belgium. Electronic address: ., Department of Radiation Oncology, Ghent University Hospital, Ghent, Belgium., Department of Public Health and Primary Care, End of Life Care Research Group, Ghent University, Ghent, Belgium., Department of Public Health and Primary Care, University Centre for Nursing and Midwifery, Ghent University, Ghent, Belgium; Department of Nursing, VIVES University College, Roeselare, Belgium; Staff Member Nursing Department, Ghent University Hospital, Ghent, Belgium., The Cancer Centre, Ghent University Hospital, Ghent, Belgium., School of Cancer and Pharmaceutical Studies, Translational Oncology and Urology Research (TOUR), King's College London, London, UK., Department of Urology and Oncological Sciences, Icahn School of Medicine at Mount Sinai, New York, NY, USA., Department of Urology, Ghent University Hospital, Ghent, Belgium., Department of Public Health and Primary Care, University Centre for Nursing and Midwifery, Ghent University, Ghent, Belgium; Staff Member Nursing Department, Ghent University Hospital, Ghent, Belgium.