A qualitative study of the pre-operative preparation of children, young people and their parents’ for planned continence surgery: experiences and expectations

Aim: The aim of this study is to explore children’s, young people’s and parents’ pre-operative experiences of continent stoma formation. Background: Current research investigating continent stoma surgery focuses on surgical outcomes including complication rates, adherence to management regimes, self-management practices and levels of continence achieved. Despite reports of preoperative anxiety in families undergoing continent stoma surgery, there has been a lack of research exploring pre-operative experiences, information needs or decision-making processes in this group. Design: A qualitative study. Methods: Forty-nine semi-structured interviews were conducted with 17 children, young people and their parents. Data were collected at key points in the surgical process that aimed to represent a longitudinal perspective of continent stoma formation. Results: The interviews suggested that children’s, young people’s and parents’ information needs in relation to the long-term implications of surgery and for their day-to-day lives were not being adequately met. The preparation process was described as being positively influenced by contact with a nurse specialist, being given time to make the decision and having access to different sources of information. Conclusion: Decisions regarding life-long planned surgery can be challenging. The individual involvement and information needs of children, young people and their parents need to be recognised during pre-operative preparation. Relevance to clinical practice: Health professionals need to discuss the holistic implications of continent stoma surgery and provide families with the time and opportunity to consider surgery and access relevant sources of information pre-operatively.