Development of a health education programme for elderly with age-related macular degeneration: a focus group study

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Abstract

Age-related macular degeneration is a serious public health problem, and in most cases no cure exists. One available intervention is low vision rehabilitation, and there is a lack of programmes for the elderly. The purpose of this paper is to present the results of an evaluation of a group-based health education programme. This programme comprised six to eight 2–3 hour meetings, once a week, for persons with age-related macular degeneration. Each group consisted of four to six participants. The goal of the programme, which has its roots in the health belief model, was to sustain and restore the participants' performance of their daily activities. The tool used for process evaluation was focus group methodology, and eight focus groups were involved. Forty five persons, whose average age was 80 years, took part in the evaluation. The results indicated that the participants were, on the whole, pleased with the content of the programme. There were, however, some indications that 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 health education programme. The importance of the group leader's role in guiding this health education programme was emphasised. Furthermore, with regard to the composition of the groups, the participants pointed out that it was important to consider variation in visual acuity, so as to provide different models for comparison, and whether both sexes should participate in all groups. Finally, several suggestions for improving the programme are put forward.

Introduction

Age-related macular degeneration (AMD) is a severe, progressive, chronic disease of the central part of the retina. It is characterised by the loss of central vision and by the fact that it never leads to total blindness 1, 2. The loss of central vision affects the performance of daily activities such as reading, watching TV, cooking, dressing and shopping [3]. The prevalence increases dramatically with age. Studies show that about 28% of those 75 years or older are affected 1, 2, 4. Since no cure exists for the majority of persons, this chronic impairment represents an important public health problem.

The intervention currently available is low vision rehabilitation 1, 4. Clarke [5]emphasises the need for specifically designed training programmes for the elderly, and that there is a lack of programmes for this age-group within low vision rehabilitation. A review of the available literature reveals few health education programmes for the ageing population with macular degeneration.

According to Minkler [6], a main goal in health education targeting the elderly is to enable them to live an independent life within their community. An important approach is therefore to provide information and skills training in order to enable the elderly to live with a chronic illness [7]. Support groups for persons with macular degeneration 8, 9and for older persons with visual impairment 10, 11are seen as an invaluable resource for helping these persons to cope with their disability on a daily basis.

Several health education programmes for the elderly have been based on behaviour change theories such as the Health Belief Model and Social Learning Theory 11, 12. The educational strategies, described for the elderly, highlight the importance of active participation in the planning and development of programmes in order to increase the potential for learning 6, 13, 14, 15, 16. Group-based programmes are seen as a promising method to enhance such active participation 6, 13, 17.

Most of the health evaluation studies among the elderly do not report on the participants' perception of the programmes, since their focus mainly has been on changes in health or health-related behaviours 12, 18, 19, 20, 21, 22, 23. In a few studies 24, 25, participants have been asked whether they were satisfied with the programmes and their outcomes.

We have previously reported the results from a study conducted to learn how persons with the diagnosis of age-related macular degeneration perceive and describe their disease, and how the disease changes the person's daily activities [3]. The results were used to plan a group-based health education programme, and a pilot test of this programme started in January 1995. In order to further develop and improve the programme, a process evaluation was undertaken. In this paper we present the results from this process evaluation. In particular, we focus on how persons with age-related macular degeneration perceived and described:

–the content and structure of the group education programme,

–the role of the group leader, and

–the composition of the groups.

Section snippets

The health education programme: discovering new ways

The programme is based on groups of four to six persons with age-related macular degeneration. The groups meet for 2–3 hours once a week for 6–8 weeks. The main goal of the programme is to sustain and restore the participants performance of their daily activities and to enable the early detection of persons who have difficulty in performing activities of daily living (ADL) as presented in Table 1.

The development of the programme was guided by the Health Belief Model, including the concept of

Content

Overall, the participants said that they were very pleased with the content of the programme, and that the information and the skills training were very good.

They could relate to what had been said and done during the meetings when discussing the ADL information and the skills training. They gave examples of ways of coping with ADL and discussed how they could apply these at home, such as

And I was there and looked at that lamp she recommended, and it was excellent

I learned that I should, if I

Discussion

The results from this study demonstrate that the participants described the content of the programme overall as very good. Caution should, however, be observed when interpreting positive ratings from older adults. Others have observed that older adults tend to give positive evaluations rather than criticism 13, 33. In this study, it seemed hard for the participants to criticise the content of the programme. For example, participants were asked what they liked the least, and their reply was that

Acknowledgements

This study was supported by grants from the Medical Research Council (grant no 02226) and “Föreningen De Blindas Vänner”

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