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Support persons’ views on remote communication and social media for people with communicative and cognitive disabilities*

Abstract Purpose: The purpose of this study was to explore support persons’ views on remote communication for persons with communicative and cognitive disabilities, and on factors enabling self-determination and participation. Materials and methods: Five focus groups with 21 support persons were conducted. They were recorded and transcribed and data were analyzed qualitatively using focus group analysis methodology. Results: The participants experience how remote communication can enable users to have increased control in their lives and how remote communication can enable self-determination and participation. Access to remote communication has a dual effect on safety. There are experiences about communicative rights of the users not being met and there is a need for better access to technology, information, and experts. There is also a need for more competence and coordination among staff and support to the users. Challenges emerge in the support persons’ dedication to the users’ right to communicate. Conclusion: People with communicative and cognitive disabilities need access to remote communication in order to have control over their own lives and to achieve self-determination and participation in society. Support persons carry a large responsibility and can provide valuable insights of users’ communication situation. Implications for rehabilitation Remote communication is important for safety; it is necessary to be able to call for help independently. To ensure the communicative rights of people with communicative and cognitive difficulties, professionals must provide assessments of standard technology or assistive technology for remote communication. There is a need for more support to and education of staff from the professions. The users themselves are also in need of long-term support. Support persons face ethical dilemmas regarding user safety on social media and internet and need guidelines and support.