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 pre-operative 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.