Understanding how persons with mild acquired cognitive impairment use and experience information and communication technology : an exploratory study

Sammanfattning: Mild acquired cognitive impairment (MACI) is a term used to characterise persons who acquire a minor, non-progressive decrease in cognitive functions due to some physical trauma, or medical conditions, such as benign tumour, cardiovascular diseases (stroke), or side effects of medical treatment. Persons with MACI might suffer from multiple cognitive and/or slight physical disabilities and need rehabilitation to recover and regain their skills. Information and communication technology (ICT) is one approach that can be considered for assisting persons with MACI to improve their skills, support their self-management, and cope with their condition. However, understanding how persons with MACI use and experience ICT tools is a challenging task. This thesis belongs to the field of consumer health informatics (CHI). The overall aim of this research was to understand how regular ICT tools are used by persons with MACI in their daily lives. In addition, the aim was to explore how to capture their experience while using these tools. With respect to the field of user experience (UX) several different methods were used in this thesis: a systematic review to find relevant literature about ICT tools for persons with MACI and analysis of the tools’ functionality against clinical needs (study I); surveys to explore how persons with MACI actually use and experience ICT and e-services (study II); social network analysis to address the communication and social interaction aspects (study III); and a diary- keeping method to explore the feasibility of a UX field study method and to capture the frequency of using regular ICT tools on a daily basis (study IV). The findings of this thesis showed a lack of ICT tools developed and evaluated for supporting self-management of persons with MACI. Moreover, a subset of the International Classification of Functioning, Disability and Health (ICF) identified in this thesis showed it to be a valuable analytical framework for exploring the functionality of ICT tools to match the needs of persons with MACI. Considering the lack of data about the persons who did not participate in the studies of this thesis, the findings provided rough information regarding the use of e-services for this population in addition to their cognitive failure levels and the most important aspects of ICT tools and web 2.0 services. Moreover, the participants in this research showed they were as capable of using the existing ICT tools as a healthy population. The findings also showed that social media, in this case Facebook, might be a valuable means of social support over and above its informational benefits for persons with MACI. Last but not least, as a result of a pilot study, the findings provided information about daily activities, feelings and use of computer/Internet as well as the strengths and weaknesses of using the UX field study method for capturing daily experiences of persons with MACI. To the best of our knowledge, the studies of this thesis were the first to explore the ICT and users’ experience for health information consumers with MACI. In conclusion, the main contribution of this thesis relates to the knowledge about the ICT tools and Web 2.0 services that are currently being used by persons with MACI and promoting them among the health informatics research community as individuals with special needs and necessities. The thesis also preliminary addresses some challenges in exploring the user experience of health information consumers with MACI.