PERSPECTIVES ON DESIGN FOR WEB-BASED SUPPORT IN LESS STRUCTURED CONTEXTS - the needs and views of young carers

Abstract: DEGREE OF LICENTIATE IN PSYCHOLOGY ABSTRACT Elf, M (2011). Perspectives on design for web-based support in less structured contexts: the needs and views of young carers. Department of Psychology, University of Gothenburg, Sweden. The last decade of extended availability of internet connectivity has increased the search for webbased health infonnation and it seems that quite a large portion of these searches are made by carers. Some of them are probably young carers, that is, young persons having a considerable care responsibility in relation to family members in the same time as many of them remain invisible for health care. Although research of web-based support involve some studies regarding youths, studies involving young carers are very rare. In the present thesis an extended definition of young carer is used and includes young people, 16-25 years of age, living close to and supporting a family member, relative, friend or girlfriend/boyfriend. Study I explores 12 young carers support needs related to the care situation and to a hypothesised web-based support system. Data was collected through interviews and a focus group and analysed with content analysis. The analysis resulted in three themes, each having their sub-themes. Main themes, with sub-themes were knowledge - understanding mental illness, managing the person with mental illness, and self care; communication - shared experiences, advice and feedback, and befriending; and outside involvement - acute relief, structured help, and health care commitments. The study concludes that most needs in the knowledge and communication themes could be supported in a web 2.0 context. To meet the need for befriending and outside involvement a geographically anchored web support with a dedicated staff is suggested, mediating their relationships with health and social care and offering a vicarious trust. Study II explored a participatory design process, with the aim to reveal what topics a group of young carers found important and how their views differed from the representatives of the project. The study included 8 participants, of which 7 from the previous study. Five consecutive design meetings were video recorded and analysed with content analysis and with use of Dewey's concept of public. Results revealed four themes of topics: Communicating the message - targeting, displaying competence, and serious attitude; ideational working principles - support goals, methods and means of support; considerations of user interaction - privacy versus publicity, risk management; user interface - user adaptation, and structural issues. Furthennore differences in the views of participants versus project representatives were revealed. In summary participants view of the user was a person that had a usefulness perspective and the object for support was primarily the person with mental illness. The project representatives' view was a person that had a short- and long-tenn self-care perspective and the object of support was primarily him-/she. The study identified four essential structures in a web-based support system and concludes that early user involvement and critical reflection is crucial in the design of web-based support systems. Key words: Young carers, Support needs, Participatory design, Web-based, Internet, Support system, Publics. ISSN 1101-718X ISRN/GU/PSYKI AVH--245--SE Mikael EIf, Department of psychoIogy, University of Gothenburg, Box 500, 405 30 Gothenburg, Phone: +46709486515, E-mail:[email protected]