Performance-based measurement of participation for people with aphasia: using an iPhone application to measure talking time in everyday life

People with aphasia often experience reduced participation in life roles as a result of their communication disorder. The aims of this thesis were to 1) develop an iPhone application (CommFit™) which measures talk time and was easily used by people with aphasia, and 2) to use the app to explore talk time as a possible performance based indicator of participation, as a supplement to currently used self-report measures. This thesis used the International Classification of Functioning, Disability and Health (ICF) as a framework for defining participation and structuring the research.

The first (preparatory) phase of this thesis involved reviewing the current state of research in the areas of participation assessment and mobile technology use, in order to inform development of the CommFit™ app. In the first stage of preparation, the concept of participation was reviewed and current self-report measures of participation restriction were crosswalked to ICF categories. Ninety instruments (2,426 items) were coded and of these, 29 instruments contained over 50% participation items. The crosswalk showed that many of the current measures for this population are not participation focused, according to the operational definition of participation developed in this thesis. The Subjective Index of Physical and Social Outcome (SIPSO) emerged from this study as a measure which contained mostly participation content, had been validated with a stroke population, and was appropriate in both format and time required to be used by people with language difficulties. Thus, the SIPSO chosen as the measure of participation for use in the second phase of this research.

The second stage of the preparatory phase consisted of a review of the use of mobile technology by people with aphasia, stroke survivors and elderly people. The review focused on synthesising the literature into a list of technology design features that facilitate technology use for this population. These features were; use of multimodal communication, utilisation of aphasia-friendly text features, large buttons, stable interface, simple navigation and lack of visual clutter. These features were integrated into the design and development of an iPhone app which measured talk time- the CommFit™ app.

The last stage of the preparatory phase involved a small but in depth study investigating the development and accuracy of CommFit™. The iterative process of developing the CommFit™ app to be aphasia-friendly was described in detail. In the accuracy study, the talk time logged by the app was compared to talk time obtained from a continuous recording. Three non-neurologically ii impaired participants who recorded their daily talk for a total of 10 hours in different environments. Accuracy of the app was found to be satisfactory at ±4% of the true talking time in ideal or silent environments and ±13% in everyday environments. The end result of the preparatory phase was a valid, usable app for counting talk time.

The second phase of this research explored the use of CommFit™ to count the talk time of people with and without aphasia. The aims of this study were; 1) to explore whether the talk time of people with aphasia was correlated with measures across the three ICF domains- Body Functions and Structures (Western Aphasia Battery-Revised), Activity (Communicative Activities of Daily Living-2) and Participation (SIPSO); 2) to compare the talk time of people with aphasia to a non-aphasic control group of the same age; and 3) to investigate the how talk time varies across weeks and days of the week (e.g. Mondays, Tuesdays). Twelve people with aphasia and seven healthy participants used CommFit™ to count their talk time for 6 hours a day for two weeks.

Results indicated that talk time was moderately correlated with the measure of participation (SIPSO) but not with the other two measures. This indicated that talk time may be an indicator of participation for people with aphasia, but that it did not reflect impairment and activity limitations. The mean talk time of people with aphasia was 2.7 minutes per hour lower than that of the non-aphasic group, but this was not significantly different. Usability results showed that people with aphasia found the iPhone and app very easy to use, however they did experience some difficulties with the headset used in the study. Ten people who consented to participate in the study were able to use CommFit™ independently, and all were able to use it with assistance. Additionally, all participants had positive feedback about the system overall. These results indicated that CommFit™ was a usable indicator of participation for people with aphasia.

The results of this thesis demonstrate that when mobile technology is designed for people with aphasia using the features outlined, it is possible for people with aphasia to use the technology independently. This has positive implications for the use of smart phones and tablets in the rehabilitation of people with aphasia, and supports the notion that people with communication disabilities can participate in the digital world if barriers are minimised. This has positive implications for the future of telehealth and self-management programs for this population. The thesis also provides an early indication that talk time can be used as an indicator of participation for people with aphasia and that it may also be used as a way of gaining quantitative information about level of participation and verbal language use. However, use of talk time as a measure is a new concept, and more investigation is needed both for people with aphasia and other populations.