“You're just on your own”: Exploring bowel symptom management needs after rectal cancer surgery through patient and clinician focus groups

Abstract

PurposeCurrently cancer survivorship often leaves the needs of patients unidentified and unmet. The study aims to establish the views of experts on managing bowel symptoms following rectal cancer surgery. MethodPeople living with bowel symptoms as well as clinicians with expertise in rectal cancer and subsequent bowel changes were invited to participate in online focus groups. Focus groups were recorded, transcribed verbatim and analysed using a modified framework analysis. Results were presented narratively with interpretations and quotations. ResultsFourteen patients following rectal cancer treatment attended one of two focus groups. Sixteen clinicians attended one of four groups. Participants described their opinions about bowel symptom management. Three themes were described by both patients and clinicians: expectations of bodily changes, supported self-repair and knowledgeable self-repair. Data from participants frequently concurred; all recognised clinicians needed to support and empower patients to independently manage their cancer consequences. ConclusionWell-managed expectations enable patients to set realistic goals and make plans. Clinicians need to support patients to understand potential bowel changes that might occur after rectal cancer surgery, providing support, information and signposting to other relevant information and colleagues. Effective communication through avoidance of jargon and rapport building as well as providing a point of contact help prevent patients feeling alone with their symptoms. Education is needed by both clinicians and patients to ensure consistent and useful advice is provided and understood. A recommendation from the focus groups is to create opportunities for patients to access information with clinician support and signposting.