Healthy-illness representation of HIV in the UK

• Main Author: Nixon, Eileen
• Published: University of Brighton 2013
• Subjects: 362.1969792; B000 Health Professions
• Online Access: https://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.607635

The purpose of this research was to explore the interactions between the perceived healthcare needs of people with HIV and the processes involved in their healthcare in order to inform future models of care. A grounded theory approach was adopted utilising semi-structured interviews with 13 HIV patients and 21 healthcare workers in 3 HIV facilities of different size and service specification. Constant comparative analyses of concepts that emerged from the data were undertaken and a dimensional analysis strategy applied to develop conceptual categories and the connections between them. HIV as a condition was conceptualised in different ways by patients and healthcare workers. Although most patients viewed their condition as stable, previous illness experience, uncertainty and the impact of HIV on social integration influenced their views on the role of HIV services. Patient-provider relationships, feeling accepted and participating in care was central to maintaining high levels of patient engagement within the HIV setting. This was in contrast to the felt or enacted stigma experienced by most patients either in other healthcare settings or in their communities and challenges current theory that advances in treatment have reduced the social stigma of HIV. The service user illness representations were not necessarily reflective of HIV service provider views on the health status of medically stable patients or of funding mechanisms for HIV healthcare. A theory of illness representation has been developed utilising the principles of Leventhal’s model adapted for service planning. While HIV clinics were actively adapting services, the pervasive experience of HIV for some stable patients suggests that representations of HIV span a healthy-illness spectrum comprising a complex range of cognitive and emotional processes. These representations influenced how HIV healthcare services were organised and utilised and may be a useful tool to inform healthcare delivery and sustain quality and public health outcomes.