The value of information and support: Experiences among patients with prostate cancer

Abstract

Aims and objectives To explore and analyse prostate cancer survivors` experiences and critical reflections of information received during their cancer trajectory.

Background Prostate cancer is one of the most prevalent cancers in men worldwide. Treatment causes side effects such as urinary incontinence, bowel changes and erection problems influencing sex life and manhood. Cancer pathways are designed to give patients and their relatives a predictable and as stress-free as possible treatment trajectory and minimise waiting time.

Design Qualitative, explorative research design.

Methods Focus groups with 16 prostate cancer survivors after having participated in an educational programme. The COREQ checklist was followed to ensure rigour in the study.

Results The main theme, ‘Help me stay in control’, and three subthemes, ‘To be met with interest and support, enough knowledge to understand what is happening and a plan to build the new life on’, emerged from qualitative analysis and highlighted the participants’ need for information and support, specially scheduled at critical times in the treatment trajectory: the diagnostic phase, the treatment phase and the life after treatment. They also highlighted the need for empathy and interest from healthcare professionals and highlighted the need for arenas to discuss vulnerable topics. Contact with peers was perceived as supportive and encouraging.

Conclusion Healthcare professionals must support prostate cancer survivors with empathy, interest and information tailored to their needs in three different phases. Continuity in information flow may increase trust and satisfaction among the prostate cancer survivors.

Relevance to clinical practice PCa patients’ need for information varied at critical times in their treatment trajectory. HCP should meet them with empathy and interest to be able to tailor their need for information and support.