Development and evaluation of a health education programme for elderly persons with age-related macular degeneration

Abstract

The overall aim of this thesis was to develop and evaluate a health education programme for elderly persons with age-related macular degeneration (AMD). I. In order to plan the programme focus group methodology was used with the aim to learn how persons with the diagnosis AMD perceived and described their disease and how the disease had changed their daily occupations. The participants perceived insecurity in performing daily occupations. They used a number of strategies to continue to perform daily occupations. The participants expressed uncertainty about and a desire to know more about the disease and its consequences both at micro and macro level.II. A cross-sectional population study was performed with the purpose of describing disability in activities of daily living and its relation to visual impairment, focusing on AMD. Especially people with AMD were found to be more dependent on help in both personal and instrumental activities of daily living. The proportion of participants with disability in ADL and the relative risk of developing ADL dependence increased with the decrease in visual acuity (VA). The relationship between ADL and VA was, however, weak, implying that people adapt to the consequences of the disease, though to different degrees. III. Focus group methodology was used to improve the programme. The results indicated that the participants were, on the whole, pleased with the content of the programme, but they did not understand all the information provided. Social support, regained hope and meeting others with the same disease were reported as positive aspects of the programme. The role of the group leader and the composition of the groups were considered important. Several suggestions for improving the programme were put forward.IV. A non-parametric statistical method was used to develop an evaluative instrument that could measure and detect (in)security as an early signs of occupational dysfunction. The study showed that the instrument had a high level of test-retest stability and was responsive. V. A randomised study showed that the programme was effective as the participants in the health education programme developed a significantly higher level of security, according to the instrument developed in study IV, than found in the individual intervention group. The health education programme slow down the progression of decline in daily occupation