Patients' experience of haemorrhagic cystitis after Haematopoietic Stem Cell Transplantation: Findings from a phenomenological study

Abstract

Purpose: Haemorrhagic cystitis (HC) is a severe complication of haematopoietic stem cell transplantation (HSCT), which significantly affects patients' quality of life. However, no qualitative studies have described to date the experience of patients who have developed this complication. Therefore, the aim of this interpretative phenomenological study performed on 2019 was to explore the experience of patients who developed HC after HSCT.

Method: A purposeful sample of nine patients who had experienced at least one episode of HC after the HSCT were approached. The audio-recorded interviews were transcribed verbatim and then analysed according to Giorgi's method. Member checking of the findings was also performed.

Results: The experience of the participants with HC after HSCT has been summarised around three main themes: "Being alerted", "It has arrived" and "It has been overcome." Patients reported to have been informed regarding the HC; after the first devastating symptoms, they reported fear and in searching for causes and strategies to alleviate the problem, which seemed to be never resolved. Patients' experience with HC is complex and experienced dramatically due to the pain and the discomforting consequences of the treatments received; they develop a sense of exhaustion that can further increase both their physical and emotional burden. The process of recovery from the huge impact, required time over the end of the HC symptoms.

Conclusions: Patients' experience of HC is complex, and varies according to the various phases of the complication. HC creates an increased physical and psychological stresses that demand additional coping strategies: therefore, the emotional support of patients is crucial. Moreover, strategies used autonomously by patients to alleviate symptoms are at merit of consideration in future studies.

Keywords: Haematopoietic stem cell transplantation; Haemorrhagic cystitis; Interpretative phenomenology; Patients' experience; Qualitative research.