Information and support seeking for teenagers in pain : the role of the Internet

Health care providers see patient information provision as one objective they must meet in an endeavour to provide good patient care. Received wisdom suggests that the more information a patient has available to them about their illness, its progression and treatment, the better their healthcare will be (Suzuki & Calzo, 2004; Information Strategy Team & Department for Health, 2010). However, this may not be the case. Some studies have shown that certain patients may not want information on their disease and patients may differ in the types of information they find most helpful depending in their information processing style (Miller, Fang, Diefenbach, & Bales, 2001; Suzuki & Calzo, 2004). In contrast, others may prefer certain types of information depending on the ways in which they cope with illness (Seale, Ziebland, & Charteris-Black, 2006) and the ways in which they process information once they have access to it (Caes, Vervoort, Eccleston, & Goubert, 2012; Eysenbach, Powell, Englesakis, Rizo, & Stern, 2004). One common source of information is through peer-to-peer interactions especially in hospital waiting rooms and ward areas, as these provide patients with the means to access others suffering from similar problems and ask to about their lives (Miller et al., 2001). However, in the digital age the internet is now emerging as the primary medium for both information gathering and peer-to-peer interactions of patient groups (Eysenbach et al., 2004). At present we know very little about how children use this mode of information gathering and support seeking in order to cope with illness, and more specifically with pain. At the very least the change of what we mean by space and place online alters the ways in which children may communicate with each other (Fox, Morris, & Rumsey, 2007). In this PhD thesis I begin, in chapter one by reviewing what limited research has been carried out on child pain information seeking. In chapter two, the first empirical study assesses what children who seek information and support online find when they search. This study is a content analysis of pain websites found by using search terms generated by teenagers. The second empirical study, in chapter three, assesses how adolescents access and use this information in the context of their wider pain coping. A questionnaire is utilised to assess these coping mechanisms. The third empirical study assesses what frequent users of the internet think of online health information. I accessed frequent users of the internet through an online message board Let’s Chat Pain. In the development of this message board a number of key ethical and methodological issues were brought to light and this study presented a solution to many of these issues. A paper describing some of the solutions presented by this case is presented in chapter four followed by the results of the study itself in chapter five. The final study assesses what impedes non-users of online health information and support in a focus group of non-users of online information and support in chapter six. The final chapter, chapter seven will draw some conclusions of the thesis.EThOS - Electronic Theses Online ServiceGBUnited Kingdo