Unseen labour: The hidden work of treatment decision-making in people living with rheumatoid arthritis

Navigating treatment decisions for people living with rheumatoid arthritis (RA) is highly intricate and demanding. Whilst the advent of novel therapies and sophisticated treatment strategies have transformed the landscape for managing RA, it has added a new layer of complexity for people making decisions about their own care. This thesis argues that treatment decision-making for people living with RA is more complex than it may initially appear. It proposes that treatment decisions are influenced by power relations, ingrained gender assumptions, and hierarchies embedded in routine healthcare practices and policies, many of which are hidden or taken-for-granted.Drawing on a feminist poststructuralist framework, this study examines how people living with RA make treatment decisions. A qualitative approach was used to explore the factors which shape treatment decision-making for people living with RA and clinicians involved in their care. A total of 134 members of the public living with RA in the UK completed an anonymous qualitative online survey and 14 participated in semi-structured interviews. Fifteen rheumatology clinicians working in the UK completed a separate anonymous qualitative online survey.Reflexive thematic analysis revealed the extensive, often unseen, and for many, daily work that people living with RA undertake when making treatment decisions. This was conceptualised as ‘treatment decisional work’ comprising interconnected forms of biographical, knowledge, and relational work.This study also revealed that treatment decision-making by people living with RA is influenced by discursive practices, identity negotiations, and structural inequalities that are frequently overlooked and taken-for-granted. These conditions exposed individuals to forms of epistemic injustice where their knowledge and lived expertise was marginalised.By highlighting the unseen labour involved in treatment decision-making, this study contributes to the understanding not only of the burden of treatment for people living with RA, but the burden of treatment decision-making itself. In doing so, it challenges current treatment decision-making models that often overlook the complex lived experiences of RA. It calls for care practices that are rooted in epistemic reciprocity, where the knowledge of people living with RA is recognised as valid and essential to collaborative person-centred care.