JMIR Publications

ABSTRACT

Background:

Parkinson’s disease (PD) is a complex, non-curable and progressive neurological disease affecting different areas of the human nervous system. PD is associated with both motor and non-motor symptoms, which negatively affect patients’ quality of life and may cause changes in socialisation such as intentional social withdrawal. This may further lead to social isolation and loneliness. The use of Information and communication technology (ICT) plays an important role in managing social isolation and loneliness. Currently, there is a lack of research focusing on designing and developing ICT solutions that specifically address social isolation and loneliness among people living with Parkinson’s disease (PwPs).

Objective:

This study aims to explore the barriers experienced by PwPs regarding social isolation, loneliness, and technology usage. Further, this study also aims to investigate the social needs necessary for creating an ICT solution that can address social isolation and loneliness among PwPs

Methods:

Two phases of data collection were conducted. During the first phase, healthcare professionals and PwPs were interviewed to understand how PD affects social life and technology usage. During the second phase, focus groups were conducted with PwPs to gather insights into their needs and identify ways to manage social isolation and loneliness. Thematic analysis was used to analyse both datasets and identify key themes.

Results:

The results showed that the barriers experienced by PwPs due to PD such as ‘fatigue’, ‘psychological changes’, ‘social stigma’ and ‘medication side effects’, affect their social life. PwPs also experience difficulties using a keyboard and mouse, remembering passwords, and navigating complex applications due to their PD-related physical and mental limitations. To manage their social isolation and loneliness, PwPs suggested having a simple and easy-to-use solution allowing them to participate in a digital community based on their interests, communicate with others, and receive recommendations for social events.

Conclusions:

The new ICT solutions focusing on social isolation and loneliness among PwPs should consider the barriers restricting user’s social activities and technology usage. Given the wide range of needs and barriers experienced by PwPs, it is more suitable to adopt user-centred design approaches that emphasise the active participation of end users in the design process. Importantly, any ICT solution designed for PwPs should not encourage internet addiction, which will further contribute to the person’s withdrawal from society.