Abstract
Our current understanding of the use of online support and information among parents of people with rare syndromes is fragmented, both theoretically and methodologically. This thesis aimed to provide a more coherent picture by using Bourdieu’s concepts of capitals, habitus and fields to explore the interplay between the social differentiation of online support use and its role within the wider caring practices of parents of people with Rett syndrome. A mixed mode, mixed method approach was used. Parents were recruited through a charity’s mailing list and communication channels and through relevant online support sites. 190 parents completed a survey about Internet and online support use. Twenty of these parents took part in detailed interviews about their use of online peer support sites. Age most strongly differentiated the use of the Internet for caring-related information and support. Time-related variables (age of parent, age of child and years since diagnosis) strongly differentiated the use of online peer support and fewer years since diagnosis was associated with gaining greater benefits from online peer support. Use of online peer support in everyday caring practices was dynamic and changed in relation to alternative sources of social capital, current need and level of relevant expertise. Interviewees with adult children had lower information and support needs overall and online support sites, used predominantly by younger carers, offered them few useful ‘goods’, except keeping abreast of developments in research and treatment. Wealthier parents tended to use blogs to read and trade information. There was a suggestion that more educated interviewees accessed a range of primary sources of information while less educated parents relied upon online peer support as a primary source of information. These findings demonstrate the importance of exploring online caring and health practices within a wider social, historical and personal context.