4.7.2 Healthcare decisions with children and young people: the continent stoma story

Lucy Bray, Senior Research Nurse/Research practitioner, Faculty of Health, Royal Liverpool Children's NHS Trust/Edge Hill University, Liverpool, UK


A continent stoma is surgically formed to improve continence management and promote independence and is a big step in the lives of families. Fifty semi-structured interviews were conducted with two groups of families: Those waiting to undergo the operation and those who had undergone the operation in the last three years. Interviews were conducted at home and methods were used to encourage the children and young people to express their experiences. Data collection and analysis was informed by grounded theory methodology.

This presentation focuses on the process by which the decision to have the continent stoma was made, who made the decision, how it was made and the process of information giving and consultation between child, young person, their family and health care professionals.

The children, young people and their parents presented different and sometimes contrasting views of the decision-making process. Some parents struggled when consenting to treatment for their child, in that they had to double-guess what their child would really want in later life. Within some families the decision to have the operation had been delayed specifically so that children could be involved in the decision-making process. Some parents spoke about the child or young person making the decision to have the operation, but on further examination this seemed to be made by the parents and then later agreed to by the child or young person. In several cases, the context and content of the discussion undertaken pre-operatively may have made it difficult for the young person to make a self-directed decision, with some of the young people demonstrating a limited knowledge of their condition and the procedure.

The findings suggest that the process by which families make decisions for planned surgery is complex, with a need for negotiation and an understanding of developmental level and individual preferences.

Recommended reading list:

  • Alderson, P (1990) Choosing for children. Parents' consent to surgery. Oxford, Oxford University Press
  • Coyne, I (2006) Consultation with children in hospital: children, parents' and nurses' perspectives. Journal of Clinical Nursing 15, 61-71
  • Dixon-Woods, M et al (2002) Childhood cancer and users' views: a critical perspective. European Journal of Cancer Care 11, 173-77

Source of Funding: N/A

Amount in Funding: N/A