Perceptions of hospital admission in patients with cystic fibrosis

Abstract

Aims and objectives: This paper is a report of a study of experiences of people with Cystic Fibrosis (CF) with their hospital admission. It evaluates how they perceive their treatment and care and the impact on their social life (school or work).

Background: In The Netherlands, people with CF are hospitalized in seven CF centers. In general, hospitalization may raise several challenges concerning the patient’s psychosocial well-being, before, during and after the admission. The admission of people with CF is complicated, because of segregated treatment and care that aims to prevent hospital-based cross-infection.

Design: This article reports on a qualitative study.

Methods: Data were collected during 2009 and 2010. Nineteen people with CF admitted for more than 5 days in one of the seven Dutch CF-centres participated.

Results and conclusions: The findings are organized into five contexts with subthemes: Before admission & Arrival (1); Treatment & Care (2); Room & Stay (3); Discharge (4); Social & Societal context (5). The findings show that patients express a need for enhancing the quality of some treatments, like intravenous injections and patients express normative expectations of professionals that directly relate to their psychosocial well-being, e.g. they want to be ‘seen’ and treated as human beings and not solely as patients. They desire segregation policies to be consistent, whilst simultaneously they prefer flexible segregation guidelines. In general, respondents are satisfied with hospital facilities. The study reports on challenges concerning continuation of school and work during the admission. The paper is relevant to every hospital where people are being nursed in isolation.