Manon Veldman is doing her PhD research, in which she has developed an E-health intervention aimed at reducing fatigue in people with a visual impairment. The study, a randomized controlled trial, is still ongoing. If you would like to participate in this study, please contact Manon.
Why are we doing this study?
Severe fatigue is a common complaint of visually impaired people. Research shows that 57% of adult clients with a visual impairment have severe fatigue, which is more than twice as high as in the general Dutch population. Chronic fatigue has a significant impact on daily functioning, social participation and work.
What is the aim of this study?
The aim of the ‘E-nergEYEze’ study is to develop and test a digital intervention that influences the impact of fatigue on daily functioning, social participation and work. This intervention consists of an E-health training, called E-nergEYEze, offered via the internet platform Minddistrict. Participants can follow E-nergEYEze at their own pace on the computer, tablet or telephone in the home situation at self-scheduled moments. It seems contradictory to offer an activity that is strenuous for people with a visual impairment, but research shows that being active with goals can actually reduce fatigue.
How do we conduct this study?
E-nergEYEze was developed by a design team with researchers, psychologists, social workers, ICT trainers and experts from Amsterdam UMC, Koninklijke Visio and Bartiméus. E-nergEYEze consists of an introductory module and 8 substantive modules with different themes, which deal with factors that play a role in fatigue: (a) Introduction fatigue; (b) Dealing with a visual impairment; (b) Helpful thinking; (c) dividing and building up activities; (d) Contact with others; (e) Learning to relax; (f) Sleep better (optional); (g) Optimizing work performance (optional); (h) Towards the future. Each module consists of information, followed by one or more exercises. The text can also be listened to with an audio button. Participants direct their own treatment and are digitally supported by a social worker. At the start there is an introductory meeting with the social worker and computer training, after which the guidance is continued digitally.
Accessibility for people with a visual impairment was tested by 5 adults (mean age 54 years, 80% male) with different eye conditions and different severity of visual impairment. Participants were asked to test some modules of E-nergEYEze while thinking aloud. A thematic approach was used to analyze the data. To increase accessibility, adjustments have been made to the E-nergEYEze prototype. Subsequently, a feasibility study was conducted with 10 adults (mean age 50 years, 60% male) with a visual impairment and severe fatigue. Participants started the intervention with an introductory meeting with the social worker and computer training, after which half of the modules were completed independently during a period of 2 months with digital guidance. The outcome ‘severity of fatigue’, measured before and 3 months after training.
The design of the intervention, the severity of the visual impairment and skills in assistive technology such as voice-over and screen magnification are important aspects to consider in the development of e-health for adults with visual impairment. Following the accessibility study, the E-nergEYEze prototype has been improved in terms of content, layout and professional guidance. The feasibility study showed a positive trend on fatigue severity and the E-nergEYEze training was evaluated with a median score of 8.0. The training was the right approach for their complaints and all participants would recommend the intervention to other clients. In total, 3 participants dropped out of the study, due to personal circumstances, digitization or other expectations.
When developing this E-health intervention, careful consideration was given to accessibility for the target group. The results of these sub-studies are promising to reduce fatigue in adults with visual impairment. A randomized controlled trial is currently investigating the cost-effectiveness of the intervention from a societal perspective. The intervention is compared with usual care in reducing the impact of fatigue on the functioning of adults with visual impairments.
Prof.dr. Ger van Rens, Prof.dr. Ruth van Nispen, Dr. Hilde van der Aa