Perspectives of people with age-related macular degeneration (AMD) and their service providers on environmental modification and assistive devices

摘要

Introduction: Very often people with visual impairment have lost vision gradually, but the home has not changed to accommodate the new situation. There may be a mismatch between the home features and the person’s needs. There is a need to understand the person’s needs in their environmental context in order to ascertain what rehabilitation interventions such as assistive devices and home modification will be most useful. It is anticipated that people with Age- related macular degeneration (AMD) may have a number of perspectives, experiences and suggestions which if explored will assist in greater understanding and in communicating helpful coping strategies to others. Aim: To explore the perspective and experiences of people with AMD and their service providers to understand better, what home modifications and assistive devices may be most useful with respect to visual function and functional vision.Methods: This study employed mixed research methods (both qualitative and quantitative) of data collection and analysis. In the quantitative phase, visual function was measured and the functional vision of 31 participants with AMD was assessed using the Melbourne Low Vision Index (MLVI) to characterise the sample population. In the qualitative phase, data about their experiences with home modification were obtained from in-depth semi-structured individual interview with participants with AMD and a focus group interview was conducted with service providers to find out their experiences of delivery information related to home modification for people with MD. In addition, a pilot simulation study of AMD in a normally vision person using opaque pupil soft contact lens (OPSCL) was conducted in order to understand better the impact of central vision loss on visual function and functional vision and to explain its potential usefulness as an educational tool for home modification providers.Results: This research highlights a number of key themes. First, the most useful environmental modifications, as perceived by the participants with AMD, are handrails, non-slip flooring, colour contrast, high contrast stair nosing, single lever tap, lifts, magnification devices and sensor lighting. Second, lack of knowledge about available services may reduce functional performance in some activities. There was a lack of awareness among the participants with AMD that home modification services were available and useful indicating communication of this service must be improved. Service providers reported a lack of referral and follow-up systems with regards to low vision and home modification services for people with visual impairment. Third, this research confirmed results of previous studies on older people’s home environments that found that kitchens, steps and bathrooms were the areas perceived as particularly hazardous. Fourth, this research confirm that although functional vision is largely correlated with visual function, a reduction in visual acuity alone does not necessary lead to reduction in functional vision. Last, a guideline for useful home modifications for people with AMD was developed with the perspectives of participants with AMD that may be useful for other people with visual impairment.Conclusions: First, there is a need to differentiate usefulness of vision-related environmental modifications as a strategy to help people with AMD, as there is considerable variability in environmental interventions which were regarded as useful, which may be attributable to differences in AMD severity, attitude, knowledge about AMD and home modifications, level of visual impairment and co-morbidities. Second, vision-related environmental modification information that is better targeted to these variables may also benefit a wider range and level of people with visual impairment. Last, the significance of non-visual coping strategies on older people’s ability to manage activities of daily living independently need to be addressed by the instruments that measure functional vision, as individualised adaptive strategies are not well measured by current measurement instruments.