Information and Communication Technology for Managing Social Isolation and Loneliness Among People Living With Parkinson Disease : Qualitative Study of Barriers and Facilitators

BACKGROUND: Parkinson disease (PD) is a complex, noncurable, and progressive neurological disease affecting different areas of the human nervous system. PD is associated with both motor and nonmotor symptoms, which negatively affect patients' quality of life and may cause changes in socialization 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 PD. OBJECTIVE: This study addresses this gap by investigating barriers and social needs in the context of social isolation, loneliness, and technology use among people living with PD. The insights gained can inform the development of effective ICT solutions, which can address social isolation and loneliness and improve the quality of life for people living with PD. METHODS: A qualitative study with 2 phases of data collection were conducted. During the first phase, 9 health care professionals and 16 people living with PD were interviewed to understand how PD affects social life and technology use. During the second phase, 2 focus groups were conducted with 4 people living with PD in each group to gather insights into their needs and identify ways to manage social isolation and loneliness. Thematic analysis was used to analyze both data sets and identify key themes. RESULTS: The results showed that the barriers experienced by people living with PD due to PD such as "fatigue," "psychological conditions," "social stigma," and "medication side effects" affect their social life. People living with PD also experience difficulties using a keyboard and mouse, remembering passwords, and navigating complex applications due to their PD-related physical and cognitive limitations. To manage their
This project received funding from the European Union’s Horizon 2020 research and innovation program under the MarieSklodowska-Curie.