Exploring the Language of Chronic Pain Stories Through a Facebook Page: A Qualitative Study on Narratives and Unmet Needs (Preprint)

Abstract

Dimensione sollievo (Dimension of Relief) and its Facebook page is a patient-centered social media initiative in the field of chronic pain, providing its users accurate resources on the medical condition and importantly a virtual space for peer-interaction for a condition which often lacks proper recognition.

The primary objective of the study on patients with chronic pain was to analyze contents in relation to unmet needs. The secondary objective was to explore the role Narrative Medicine in this form of social communication.

All the posts with replies and comments from the Facebook page from 2020 to 2023 were analyzed in terms of thematic analyses by Frank, Kleinmann, Launer classifications and by Berne's transactional analysis. Language styles, semantics, word frequency and metaphors were also analyzed.

Users welcomed the Facebook page Dimensione sollievo as a safe space for peer interactions, where they found understanding and relatedness, in contrast to what they experience outside the community. Interactions were characterized by short comments but became more intense around issues where injustices were perceived, such as scarce recognition of their medical condition by medical professionals and family, and access to benefits. Narrations expressed difficulty in coping with disease and lack of recognition. Thematic analysis of contents showed the most evident dimension emerging from the descriptions and stories to be the dimension of disease. Stories also revealed a state of steadiness or regression, that is lacking clues to coping strategies, with few stories of progression or resolution.

Application of narrative medicine (NM) tools in the analyses of these contents allows to highlight topics relevant to patients and unearth less obvious unmet needs. This is the first study to explore potential of NM in chronic pain. It is conceivable that a knowledgeable implementation of NM tools by moderators leveraging on the community's collective experience, has the potential to lead to an evolution in the culture of pain management, while elevating the community's experience.