John Powell*, University of Warwick, Coventry, United Kingdom Track: Research Presentation Topic: Consumer empowerment, patient-physician relationship, and sociotechnical issues Presentation Type: Oral presentation Submission Type: Single Presentation Building: MECC Room: 0.8 Rome Date: 2010-11-30 10:30 AM – 12:00 PM Last modified: 2010-09-21

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Background
The economic, social and psychological burden on informal carers of people with dementia is huge, and their practical needs for support, as well as their needs in relation to the emotional impact of caring, are especially high. Web 2.0 technologies are emerging as tools to help carers to reduce social isolation, to seek health information and support, to share experiences with others, to undertake remote consultations, to remotely monitor the person they are caring for, and to organise socially and politically in virtual communities.

Objectives
We aimed to identify the attitudes and beliefs of dementia carers towards Web 2.0 technologies and specifically the barriers and facilitators to health and social services harnessing Web 2.0 to support the caring role. This was one objective within a larger study of carers’ use of technology.

Methods
We undertook semi-structured interviews with a purposive sample of 34 family carers of people with dementia (22 female, 12 male) to explore their views on the use of new technologies. The sample had a wide age range (23 to 91 years) and there was a mix of spouse carers, son and daughter carers, and grandson and granddaughter carers. We also ensured there was a range of technology experience in the sample. During these interviews we invited discussion on three scenarios which described examples of how new networked technologies could be used to support the caring role.

Results
Overall the attitude to new networked communication technologies among interviewees was a positive one, although there was not unbridled enthusiasm. Technological innovations were seen as part of societal change and inevitable. There was a broad acceptance of this expansion, provided that the technology was useful and driven by carer needs, rather than by technological possibility. The internet was valued as a source of information and support but there was also some anxiety about what information carers may access. Carers, who were often socially isolated, valued human contact and were concerned that this might be lost in the adoption of social technologies. This related to a broader issue which was a key concern: if health or social services adopted new technologies these should complement existing services, not substitute for them. Internet technologies may also facilitate remote caring, providing the means for contact between carer and patient at a distance, allowing greater flexibility for carers who were often very constrained in their movements. At the same time, however, remote caring was seen as a potential threat to the privacy and autonomy of the person being cared for, and again carried the concern of losing valuable human contact.

Conclusions
The internet has the potential to empower carers to become informed experts, providing access to social support, knowledge and resources, and by providing a sense of virtual community. Health services planning to harness such technologies should note that while carers are broadly supportive of innovation, they are also wary of technology replacing face-to-face support. They also have concerns about possible threats to privacy, autonomy and dignity.