Final Report from the pilot project Parkinson's ICT challenges (PIKT) is published!

The pilot project Parkinson's ICT challenges was conducted in 2008 with support from IT Funk and The Research Council of Norway . The pilot project is now complete, and the final report is published.

Story by: - 19.01.2009

Use of technology is central in today's society, and affects employment opportunities as well as participation in many other arenas. People with Parkinson's syndrome (PS) have indicated PC use as a problematic area. MediaLT first came in contact with this problem area through the pilot project STEMINT, project nr.176984/i40, where several of the participants had PS. MediaLT prepared a status report on PS and the use of the computer: "We will not accept that the technology is taken from us! "(Tollefsen 2007) on behalf of IT Funk. The report concluded that knowledge relating to the use of technology for people with PS is very limited, and in particular, pointed out the need for:

• Knowledge of how existing technology can best be adapted for the group.
• An appropriate methodology for the selection of aids / adaptations for the individual.

The main objectives of the pilot project were to:

Investigate and document the need people with PS have for adaptation of hardware and software, and lay the foundation for R & D activities that meet this need.

The project has mainly consisted of two empirical activities:

1. A general survey with a broad range of people with PS, to survey their experiences in relation to PC use, with a focus on: frequency of PC use and its importance, problems related to computer use, experience with potential solutions, and help in the adaptation of PC-use.
2. Specific testing of relevant adjustments with the aim of finding appropriate adjustments, where a small group of PC users with PS tested how a range of assumed appropriate alternative hardware and software functioned.

Key findings

The survey also focused on people of working age. The results match well with national data on frequency of PC-use: 2 / 3 of the sample used the PC daily or weekly, regarding the use as important. At the same time 77% of respondents reported significant to very severe problems related to their illness in connection with PC use.

The number in the sample who do not make use of a computer matches the figures for the general population, and there was no explanation for why some in the group never used a computer - neither gender, work experience or illness influenced this. The main causes are thought to be the same as those for the general population, such as lack of knowledge, interest and finance.

Special problem areas for PC users with PS are inertia, muscle rigidity, problems with the use of the mouse, tremours and issues related to the keyboard and ergonomics.

Great need for adaptation!

The need for adaptation to facilitate PC use in this group is now strongly documented. At the same time the survey showed that very few had in fact received help in this way, and that any assistance received was usystematic and random. Only 9% of the respondents had received help from government agencies. Furthermore there were no indications that the workplace was a key source of assistance.

Generally, there was very limited experience with alternative computer equipment, also among those who had received help with adaptation, in particular alternative mouse and keyboard solutions. This indicates that people with serious problems relating to mouse and keyboard use had not been offered any alternative to standard mouse and keyboard devices.

Approximately 80% of respondents were of working age, and of these, approximately 30% were employed. The level of employment was about half the national average, even when age was taken in accout and full-time active employment equated with part-time employment / sick leave and disability. These findings raise questions about the reasons for the low level of employment, and whether  people with PS are excluded from the workplace because of their illness.

Individual adjustments necessary

There was no correlation between disease-related symptoms and equipment-related problems, which strengthened the findings in the testing that there are large individual differences - and a corresponding need for individual adjustments.

The trackball mouse was generally rated as very appropriate. Other settings in Windows Vista were also useful. Challenges in relation to mouse clicking were mapped as a problem area.

There is also a need for further refinement and dissemination of knowledge about the appropriate adjustments, and increased / improved assistance.

Those who wish can now read the final report for the pilot project, where all the findings are described: Final Report PIKT project (in Norwegian).

In addition a summary of tips for appropriate ICT adjustments can be found in the project pages.

The blog for the collaborative project "ICT for Parkinson" managed by the Norwegian Parkinson Federation is now being updated to receive the findings from the PIKT pilot project.

Many thanks to everyone who has participated in the project, and especially to the project's test group.

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