A Model for the Provision of Adaptive eHealth Information Across the Personal Social Network
This thesis describes research into the facilitation of mediated communication of health updates and support needs across the social network, on behalf of individuals experiencing acute or chronic health problems. This led to the user-centred design, development and evaluation of a prototype software tool. Investigatory applied research was conducted with the parents of sick newborn infants who were (or had previously been) cared for in a Neonatal Unit, and their social networks of family, friends, colleagues and neighbours. The thesis makes contributions to knowledge within Social Networks, Health Informatics, Adaptive Systems and User Modelling. The user-centred research was conducted using a Grounded Theory approach, progressively focussing on developing themes. An iterative approach was taken to evaluation of the resulting theory. In the Social Networks domain, a novel, intuitive mechanism for capturing the membership and structure of an individual’s personal social network has been defined and developed, grounded in the work of evolutionary anthropologist Robin Dunbar. Use of the highly visual mechanism requires low levels of literacy and computer skills. It is cross-culturally applicable, and makes no prior assumptions about an individual’s relationships. In the domains of Health Informatics, Adaptive Systems and User Modelling, a model has been defined for adaptive information sharing across the personal social network. This model provides a number of new insights about information sharing choices made by an individual experiencing a health crisis (the ego) and their supporters (alters): 1. Overall, egos are willing to provide information about health state, support needs and socially normative matters (e.g. baby’s name), but are reluctant to report on emotional state. 2. Egos choose the subset of information that they provide according to the alter’s emotional proximity, degree of shared experience and tendency to worry. The exception is socially normative information, which egos are usually willing to provide to the entire network. 3. Egos adapt the information that they provide in two ways. Firstly, they employ a strategy of benign deceit, by choosing not to tell the whole story, or the whole truth. Secondly, they promote unexpectedly helpful alters to a closer emotional proximity group, resulting in that alter receiving more information than they would usually. 4. Alters do not want detailed medical information, even when it is readily available. Beyond highly summarised medical information, they want to know the predicted outcome of the health crisis, and the ego’s support needs and emotional state. 5. Alters want as much information about the parent as the infant, if not more (when the ego is the parent of a sick infant).
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