Reflection and personal health informatics for people living with HIV

Recent advances in medicine mean that millions of people who are living with the Human Immunodeficiency Virus (HIV) can expect to live normal life spans. However, HIV, the medication prescribed to control the virus, and living with a stigmatized disease, are each associated with a wide array of negative impacts on the body and mind, and these present a challenge in an individual’s ability to self-manage their health information. A key aspect of self-management is self-understanding, and Personal Health Informatics (PHI) has the potential to help those living with HIV in understanding their health through reflection. However, there is little indication of the needs of people living with HIV and how PHI systems can best support them in reflecting on their health information. In order to fill this gap, this thesis aims to answer the overall research question: How can Personal Health Informatics systems support people living with HIV in reflecting on their personal health information? Answering this research question was approached in four parts: • The development of a synthesized model of the process of PHI, as means of understanding the context of PHI. • Interviews with HIV+ individuals were conducted to understand where there were opportunities for supporting reflection. • An analysis of an online forum was conducted to determine what people living with HIV were trying to reflect upon, what health information was being asked about, and how the community attempts to support them in reflecting on their health. • Two visual prototypes were designed to simulate community-aided reflection and support people living with HIV in reflecting on their personal health information. These were used during a user study to understand how reflection occurred. My research is the first to explore how to support HIV+ people in reflecting on their personal health information. The main contribution of this research is a detailed understanding of how PHI systems can support people living with HIV in reflecting on their health information. This main contribution is comprised of four smaller ones: • A six-stage process model of Personal Health Informatics • A detailed understanding of how people living with HIV currently track and reflect on their personal health information, and design implications for PHI systems to support them in reflection • An empirical understanding of community-aided reflection as it occurs in an online forum, alongside the identification of five common questions that people living with HIV seek help in online forums for reflecting upon, the information asked about, and how the community attempts to address the questions • A detailed depiction of how reflection occurs when using a prototype designed to simulate community-aided reflection