PhD dissertation, submitted to the Faculty of Political and Social Sciences of Ghent University in fulfilment of the requirements for the degree of Doctor in Communication Science in the academic year 2020 – 2021.
This doctoral dissertation studies health information behaviour and use by middle-aged (50-64 years old) and older adults (65-80 years old) in Flanders, the northern, Dutch-speaking region of Belgium. Through qualitative analyses of 40 in-depth, semi-structured interviews, this thesis examines why (not), how, where, and when middle-aged and older Flemish adults obtain, circulate, and use health information and to what outcomes and effects. Two dominant lines of research are chiefly explored, namely 1) the role of online health information (OHI), and 2) health information sharing behaviour in everyday social interactions. Additionally, in support of these research lines, quantitative data are presented which provide insights into the use of information and communication technologies (ICTs) and digital media by a larger sample of Flemish middle-aged and older adults. Also under scrutiny, as part of a critical reflection on the interview fieldwork, are the self-presentation efforts by interviewees, that is to say, how they perceive and present themselves as rational and sensible Internet users and OHI seekers by engaging in impression management (IM).
To arrive at meaningful answers to the research questions, it is argued in Chapter 2, which forms the first chapter of the theoretical framework, that health-related Internet use (HRIU) including health information behaviour and use take place and are situated at the crossroads of society, health, and media. The engagement with and use of health information can therefore be considered part of larger phenomena, namely the information society and Giddens’ (1991) notion of the reflexive, risk-averse citizen living in late modernity. From a health perspective, it is argued that (bio-) medicalisation goes a long way in explaining the expansion of health and medicine in society and their increased importance and presence in everyday life. Contemporary attitudes towards health, healthcare, and health information are furthermore informed by, and can be traced to, neoliberal perspectives and the pursuit of healthiness through individual empowerment and healthism. The role of the media in communicating about health and the considerable and wide-ranging influence of health in the media on the public are expounded, as well as the role of the Internet and that of search engines, which leads to the conclusion that we live in what might be called a ‘search society’. In Chapter 3, the significance of health information, the proliferation of health information and its ubiquitous presence in mass and digital media as well as everyday life, and the effects, outcomes, and challenges of OHI are discussed. The theoretical underpinnings for the study of health information are formed by the concept of ‘health orientation’ and the field of research which studies health information behaviour. All in all, Chapter 3 demonstrates the broad and complex scope of health information by offering a wide-ranging and detailed introduction and discussion of what is at stake. The last chapter of the theoretical framework, Chapter 4, zooms in on middle-aged and older adults as media audiences and users in relation to health information. The notion of the information and search society is extended to that of the ageing society to reflect the rapidly ageing world population and the challenges it brings. Important critical notes are shared with regards to delineating and defining the demographic groups under study. Finally, the focus shifts to the ‘grey digital divide’, which describes the differentiated adoption and use of ICTs, the Internet, and digital media by older adults. The chapter is concluded with a discussion of HRIU, OHI, and health information seeking by middle-aged and older adults.
The quantitative data presented in Chapter 7 suggest that the use of ICTs and digital media by Flemish middle-aged and older adults has become widespread. Remarkable shifts in ICT use and an overall increase in digital participation are reported, with major upturns in smartphone ownership, combined device ownership, consumption of digital news, and the use of WhatsApp. While not directly contributing insights with regards to the use of (online) health information, this chapter does find that a wider population (than the 40 interviewees) of Flemish middle-aged and older adults are increasingly accessing the Internet via multiple devices, that their digital experiences are becoming more diverse, and that they participate digitally more than before.
It is therefore perhaps not a big surprise that Chapter 8 finds that the Internet is a popular source of health information. Building on the notion of the search society introduced in Chapter 2, this chapter examines the role of OHI and its influence and impact on the relationship and interaction between respondents and their physician. OHI is therein labelled as ‘Doctor Google’, not only due to Google’s dominance in the search engine market, but also because most respondents start their quest for health information with a search query in Google. The study finds that respondents obtain OHI pre- and post-consultation, albeit with different motivations and in search of different types of information. Respondents strategically and carefully introduce OHI in the clinical encounter, or, alternatively, do not talk about it at all, with only a few respondents openly including OHI in their interactions with the doctor. The chapter concludes that ‘Doctor Google’ expands the traditional patient–physician dyad into what might be called an ‘information triangle’.
Delving deeper into the phenomenon of OHI, Chapter 9 shifts the focus to a specific popular platform in the contemporary digital information landscape, namely Wikipedia. The online encyclopaedia is one of the most-visited online sources of information on a wide range of topics, including health and medical affairs. The chapter finds that Google and Wikipedia are instrumental in respectively linking to and offering health information to interviewees. As few studies have examined user perceptions and the actual use of the online encyclopaedia – let alone among middle-aged and older adults – this chapter examines respondents’ attitudes towards and perceptions of Wikipedia, as well as their use of Wikipedia as a source of health information. The convenience, coverage, topicality, comprehensibility, and conciseness which Wikipedia offers, as well as familiarity with the online encyclopaedia, make it an attractive source of health information to respondents. However, while Wikipedia together with Google forms an important chain in the digital health information ‘ecosystem’ or environment, the online encyclopaedia ultimately appears to play a limited role in the health management and decision-making practices of study participants: they use Wikipedia primarily to obtain basic facts and general information.
Chapter 12 broadens the health information scope by finding that the middle-aged and older adults respondents are ‘health information omnivores’ who not only obtain information from the Internet, but from multiple channels and sources, both consciously and unconsciously, often resulting in media complementarity. This complementarity extends to sharing and exchanging health information in everyday casual social interactions (Chapter 10), although, given among others the sensitive and private of health, not everyone is willing to share health information (Chapter 11). Chapter 10 and 11 together represent the second main research line herein: sharing as a health information behaviour. Chapter 10 finds that health information sharing is a common and frequently occurring type of health information behaviour which is embedded in everyday social and supportive interactions. The sharing of health knowledge, experiences, and advice takes place both intentionally and in a premeditated fashion, as well as unintentionally and non-premeditated when spontaneous opportunities arise. All in all, sharing appears to play an important role in the acquisition, exchange, and circulation of health information. Chapter 11 starts where Chapter 10 leaves off, by investigating instances of and reasons for health information non-sharing. Non-sharing has received little attention in the literature, even though non-sharing might lead to information disadvantage or even information poverty, which might in turn lead to real-world negative health outcomes. Seven reasons for health information non-sharing behaviour are found, namely health as a non-topic, avoid being labelled as ill, individual responsibility, avoid burdening others, lack of trust in others, lack of trust in the Internet, and avoiding information overload. Contributing to an understudied area of information behaviour by offering new insights on (non-) sharing behaviour as well as nuances to existing work, Chapter 10 and 11 emphasise the social character of health information. That is to say, the chapters illustrate that there is more to the health information behaviour and use by Flemish middle-aged and older adults than searching for information on the Internet.
The latter point is further developed in Chapter 12, the last empirical chapter. Approaching health information from the perspective of Alzheimer’s disease (AD), Chapter 12 finds that the Internet is but one source of health information, which is complemented by narratives and representations in traditional mass media, everyday interpersonal interactions and observations, as well as other sources. Novels, personal experiences/social proximity, public figures and particularly film stand out as sources of AD information, suggesting that fictional narratives, personal experiences, and being able to identify with others leave lasting impressions and help to communicate and disperse information on AD. Besides their cross-source engagement with information sources, respondents’ perceptions and knowledge of AD are explored, as few qualitative studies have examined what the public over the age of 50 knows about AD. Common misconceptions and gaps in knowledge persist, including AD being considered part of the normal ageing process and old age as well as confusing AD with Parkinson’s disease.
All in all, this dissertation illustrates that health information is an important aspect of contemporary life and the media landscape. In a rapidly ageing information and search society in which health in the broadest meaning of the word is highly valued and at the forefront of public and individual consciousness, and in which health and media are intimately linked, health information plays an important role in educating and possibly empowering citizens in matters of health and illness. Yet, while interviewees look up and make use of health information in sickness and in health, it seems that the role of that information remains limited. Respondents hold the doctor in high regard, describing the physician as the first and foremost medical authority, expert, and most trustworthy source of health information. Chapter 6 suggests that such expressions are in part an element of the self-presentation efforts of respondents to portray themselves as responsible Internet users and sensible OHI seekers, who do not take OHI too far and certainly do not diagnose or treat themselves. By way of a theory-driven thematic analysis, the self-presentation efforts of interviewees are scrutinised in Chapter 6 through a theoretical lens which consists of impression management (IM) theory enhanced with the third-person effect (TPE). The study finds that respondents engage in various IM behaviours to maximise positive impressions (proactively demonstrate knowledge, accomplishments, and positive outcomes; compare and distance oneself from others) and minimise negative impressions (respond to critical questions; communicate limitations and offer external explanations). Thus, it is concluded that respondents overall tend to present themselves as rational and sensible Internet users in the context of obtaining and using OHI.
Taken together, the findings in this dissertation might be of interest and help to media and communication scholars – particularly health communication researchers and practitioners – as well as information professionals, healthcare practitioners, and policy makers. The findings herein also bare relevance to the global COVID-19 pandemic and ‘infodemic’ which continues as this thesis was completed. The COVID-19 crisis has amply illustrated not only the importance of clear communication between governments, scientists, health professionals, the media, and the public to effectively respond to a pandemic, but also the need to timely disseminate credible and accurate health information and advice to the public. By studying when, where, and how Flemish middle-aged and older adults search for, obtain, circulate, and use health information, this thesis might be of help and contribute to efforts to inform the public on matters of health and illness, in times of crisis or otherwise.