Disease perception of children with cystic fibrosis and the impact of the disease on their lives: A picture-analysis study

Abstract

Background

Cystic fibrosis affects children physically, psychologically, and socially. However, children may have difficulty verbally expressing their feelings and thoughts about the disease. The aim of this study was to explore how children with cystic fibrosis perceive the disease and how it impacts their lives using the picture analysis method.

Methods

A qualitative design was used in this study. Children were asked to draw pictures illustrating how they perceive their illness. The story behind each drawing and the results obtained from the picture analysis were converted into written texts and examined together. The obtained written texts were transferred to the MAXQDA 2020 software for coding. A thematic analysis was conducted, and themes and subthemes were created.

Results

In this study, most of the children were male, aged 8 to 12 years, and had been diagnosed within the first six months of life. All participants had a history of hospitalization and were undergoing ongoing polypharmacy. The drawings created by the participants reflect various emotions, thoughts, experiences, and desires related to the disease. Analysis of these drawings identified three main themes (Perception of Disease, Impact of Disease and Treatment Process, Needs and Desires) and 10 subthemes.

Conclusions

The drawings created by participants illustrate both positive and negative perceptions of the disease, as well as issues related to socialization, body image, self-esteem, and psychosocial well-being.