Patient education: perspective of adolescents with a chronic disease

The purpose of this study was to describe patient education from the perspective of adolescents. Data were collected by interviewing adolescents who had asthma, epilepsy, juvenile rheumatoid arthritis, and insulin-dependent diabetes mellitus. The sample consisted of 40 Finnish adolescents aged between 13 and 17 years. The interview data were analysed with methods of content analysis. From the perspective of adolescents with a chronic disease, patient education can be divided into the following categories: routine programmes, problematic planning issues, atmosphere of patient education session and written patient education material. Some features of ideal patient education also emerged. In a routine programme, patient education was based on the professional knowledge of the physicians and nurses rather than the needs of the adolescents. It was provided at a time that was good for the nurses or physicians. The level of education was not compatible with each developmental level of the adolescent. Problematic planning issues included a poorly outlined plan of education and a lack of systematic and continuous education. Educational communication consisted of dialogue between the adolescent and the educator. An encouraging atmosphere developed when the educators motivated the adolescents, respected them and their opinions and encouraged them to express their feelings, to ask questions and to relate experiences. Also, it was important that the adolescents' opinions were respected. In ideal patient education, the sessions had been planned well beforehand based on the adolescents' needs and written patient education material. Ideal patient education helped adolescents to acquire skills to take care of themselves and provided information on how to adjust to different situations and problems. The results provided useful insight into patient education and served to raise awareness of the problems and difficulties experienced by adolescents with a chronic disease.