Peer-to-peer Support: Digital Networking in Aphasia to Improve Quality of Life (PeerPAL) - Study Protocol for App Development and Evaluation

Abstract

Background: People with aphasia (PWA) often have a reduced quality of life. Nevertheless, there are currently only a few specific services that respond to this problem. Hence, there is a pressing need for action to improve participation and well-being of people with aphasia. An adapted social network could be a solution. Well-being could be increased by exchanging experiences with peers in a similar situation. Moreover, comprehensive digital coverage would also be possible in rural and underserved areas. This digital social network should be adapted to the specific needs of PWA. Therefore, a participatory, agile process with the involvement of the target group should be adopted.Aim: The aim is to develop and evaluate a social media platform as a smartphone app to support the social integration of PWA and to improve their quality of life. In addition to the digital exchange, face-to-face meetings between PWA should be stimulated.Design: The study will be conducted in a randomised pretest-posttest control group design with follow-up testing. The participants will be randomly assigned to the experimental intervention (36 participants) or the control intervention (36 participants). The primary outcome is quality of life, measured with the SAQOL-39. At all measurement times, psychological well-being is recorded with the help of two measuring instruments (GHQ-12 & DISCs). The secondary outcome is the recording of social contacts and activities as well as associated emotions, registered in a structured diary. In addition, communication skills (measured with the CPIB) and social support (recorded with the F-SozU) will be examined. Method: During the first project phase, a user-centred, agile development process will be adopted to design the app. The target group will be involved in the app development in a participatory manner. A workshop is planned for the users of the app. In the second phase, the usability and user-friendliness of the app will first be evaluated in a feasibility study. Subsequently, in the main study, the app will then be tested by the target group for 4 months.Discussion: The app developed in the research project is the first social network that is tailored to the needs and capabilities of PWA. It aims to enable better exchange between PWA to improve social participation and quality of life.