Exploring the Role of Online Health Information and Social Media in the Illness Experience of Arthritis-related Fatigue: A Qualitative Study

Abstract

Past research has identified that people with arthritis experience the symptom of fatigue which has a considerable impact on their daily lives and social support networks. People with arthritis seek information to cope with the illness experience of fatigue, and as technology develops online health information (OHI) and online social support groups are becoming prevalent healthcare resources for people with arthritis-related fatigue. However, little is known about how people with arthritis-related fatigue’s use of OHI and online social support affects their illness experience and patient practitioner relationships. In this study, I aimed to explore how OHI and online social support impacted people with arthritis’ illness experiences using an inductive qualitative analysis. Seven focus groups were facilitated by myself and two other researchers with 21 participants aged between 28 and 77 years. Within the focus groups the participants were asked questions about their thoughts and experiences about OHI, online social support, and the role of OHI in their healthcare. The focus groups were recorded, transcribed, and analysed using a combination of Interpretative Phenomenological Analysis (IPA) and Thematic Analysis. From this analysis, I identified 5 themes. The first theme is ‘navigating fatigue’, which explores participants’ retellings of a loss of agency due to fatigue. The second theme is ‘gaining agency using OHI’ where participants described receiving a lack of information from their healthcare practitioners and how they used OHI to fill in the gaps. The third theme is ‘social interactions online change illness experience’, which details how social media use changed participants’ evaluation of illness experience and perception of fatigue as a legitimate symptom. The fourth theme, ‘communicating fatigue to medical practitioners’, illustrates how participants used OHI as a helpful resource to assist in their discussions with healthcare practitioners. Finally, the fifth theme ‘healthcare experienced online’, explores how participants experienced medical practitioners using the internet including online social support groups as a resource to connect with participants outside of traditional healthcare settings. These themes provide novel insights into how OHI and social media might be used as a healthcare resource from the patient perspective. Moreover, the results of this thesis have implications for clinical psychology interventions focused on arthritis-related fatigue and the integration of OHI into medical practice.