The invisible reality of arthritis: A qualitative analysis of an online message board

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Abstract

Background and aim: Living with a chronic illness, such as arthritis, creates many psychosocial stressors, which can be difficult to cope with. Exploring the interactions which take place on an online message board for people with arthritis may provide insight into both the social support offered, as well as highlighting the groups' needs that perhaps are not being met in a more formal ‘offline’ setting. The aim of this study was to investigate how and why an arthritis online message board was used.

Methods: A retrospective three-month period of discussions posted on an online message board for people who have arthritis was downloaded into a word document. Collecting data in this manner ensured that completed discussions were captured. Eighty-seven initial messages and 981 replies were analysed. The discussions were analysed using interpretive phenomenological analysis.

Results: Four master themes were identified. Firstly, the invisible reality of the condition; secondly, information exchange, whereby users of the message board were shown to be both seeking and providing information; thirdly, while users praised the support they received from family and friends, the support offered and received online was considered to provide additional benefits. Finally, the message board allowed users to share (primarily negative) emotions which they felt unable to express in their offline worlds.

Conclusion and implications: Patients do not always understand the information being offered by health care professionals, and they do not have the confidence to ask for clarification. Health care professionals need to ensure that they find a way of checking levels of patient understanding. Failure to do so means that patients may turn to alternative sources, which may not provide accurate information. The study also showed that people with arthritic conditions find it difficult to express how they are feeling in their offline world; furthermore, they find it difficult to ask for support from their significant others, preferring instead to ‘suffer in silence’ and seek support from the online community, potentially further isolating them from the support of those in their offline world. There is scope for such patients to be both empowered and educated, so that they are better able to ask for the help they need, which in turn will help to counteract the danger of isolation. Copyright © 2008 John Wiley & Sons, Ltd.

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