Experiences and perceptions of people living with a colostomy for a long time: a phenomenological study.

Abstract

Increased life expectancy rates in people with a stoma prompt the need to gain a better understanding of what are the concerns and the strategies of adaptation in this population in the long term to provide appropriate guidance and ongoing care. Therefore, the aim of this study is to explore the experiences and perceptions of people living with a colostomy for at least 20 years with regard to body changes and how these influence stoma care. This is phenomenological study. Five main themes were identified following data analyses: 1) accepting the stoma and living one's life almost fully; 2) changes; 3) practices to which I owe the recovery of my autonomy; 4) we are in need: before, during and after; 5) most people don't know. After many years, interviewees did not report significant changes in the way they had to manage their stoma and activities of daily living. Participants underlined how their healthcare needs continue throughout their lives, thus outlining the key role they attribute to nurses, stoma therapy services and associations of people with a stoma.