The voice of ostomates: an exploration of stoma care in England

Abstract

Background: This article is part one of a series presenting the findings of stakeholder surveys with ostomates and stoma care nurses for stoma services in England. Due to the volume of data and publication limits this article focuses on the views and experiences of 2504 people living with a stoma (ostomates). Aim: To understand the experience of ostomates in relation to the current services provided in hospital and at home, the delivery of care and views on areas that work well and areas that require improvement. Methods: Ostomates were asked to share their experiences in a national online survey, promoted via multiple organisations. The survey included sections for respondent demographics, interactions with the stoma care nurse (SCN), products and dispensing services, as well as patients' experiences relating to both hospital-based care and home-based care. Free-text responses relating to service delivery in hospital and at home were coded and thematically analysed. Findings: Results are presented, and verbatim quotes used to demonstrate themes. These include care provision and access to visits from the SCN, physical and psychological care, information sharing, specialist knowledge and products. Conclusion: Overall, the survey respondents praised the care given, however, the experiences and views shared via the survey show significant variation in the care and services received. This article presents the findings of a survey of ostomates living in England. A second article, presenting the findings about the experiences of stoma care nurses will be published in a forthcoming issue.