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What children with cystic fibrosis know about their illness

Goodhart, F. (2003). What children with cystic fibrosis know about their illness. (Unpublished Doctoral thesis, City, University of London)


The aim of this study is to design a tool to access the knowledge that children with cystic fibrosis have of their illness. This will help clinicians to develop an understanding of each child’s existing knowledge so that new information can be targeted appropriately and children can be involved in making decisions about their treatment and their future.

A booklet was designed in which a series of questions from another (fictional) child with CF is presented to participants who are asked to help this other child learn more about the illness. Questions covered issues such as the nature of CF, its treatment requirements, the future impact of the illness, the psychological effect of CF upon family members, and the genetics of the disease. The booklet was structured to encourage children to use their own words to describe their experiences of living with CF in an attempt to gather qualitative data from the study. However, a scoring system was also developed to allow a quantitative analysis of the data to take place. The relationship between knowledge, compliance with treatment and family factors was examined, as was the way in which knowledge of CF develops with age.

The booklet was administered to children between the ages of four and eighteen. Young children gave fairly brief responses but displayed an impressive early knowledge base, understanding that CF is an illness they are bom with, that will not go away, and that they have to undergo treatment to stay well. After the age of eight children begin to develop an awareness of the genetic nature of the illness, establish a clear rationale for treatment, and recognise the psychological impact of the disease upon themselves and their parents. Adolescence sees a jump in understanding of the impact of CF upon life expectancy, as well as further developments in grasping the nature and genetics of CF and recognising the wide ranging emotional impact that it has upon the whole family. However, gaps in knowledge remain, particularly in relation to issues of fertility.

Knowledge of CF was very strongly associated with age and with cognitive maturity, as would be expected given the cognitive advances made by children between the ages of four and eighteen. Knowledge of CF was not found to be associated with any of the other factors explored in the study. The booklet was well received by participants and their parents, and suggestions are made for its use as a clinical tool.

Publication Type: Thesis (Doctoral)
Subjects: B Philosophy. Psychology. Religion > BF Psychology
Departments: School of Health & Psychological Sciences > Psychology
School of Health & Psychological Sciences > School of Health & Psychological Sciences Doctoral Theses
Doctoral Theses
[thumbnail of Goodhart thesis 2003 PDF-A.pdf]
Text - Accepted Version
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