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Journeys toward adjustment: Exploring the role of emotions and beliefs from pre-diagnosis of inflammatory arthritis through the first 12 months

Taylor, Julie

Authors

Julie Taylor Julie6.Taylor@uwe.ac.uk
Senior Lecturer in Adult Nursing



Abstract

The intention of this thesis is to explore the role of emotions and beliefs from pre-diagnosis of inflammatory arthritis through the first 12 months. Inflammatory arthritis (IA) is an umbrella term for chronic, progressive and systemic auto-immune diseases and for the purpose of this study will include Rheumatoid Arthritis (RA) and Psoriatic Arthritis (PsA). These diseases can progress rapidly, causing synovitis and damaging cartilage and bone around the joints (chapter 1). The impact of these non-curable illnesses is physical and psychological (chapter 2), and may permeate into all aspects of life, (work, families, relationships).
However what is unknown is how people in the early stages of IA manage or cope with their diagnosis or whether pre-existing influences (such as Illness Beliefs, chapter 3) have an impact in the first year. If this is understood with more clarity then the clinical team could use appropriate interventions to improve patient care and ultimately outcome. In order to meet the aims a longitudinal hybrid approach (chapter 4) was used. Fifteen participants were followed for the course of a year with interviews pre and post consultation, then at twenty-six and fifty-two weeks. These data were analysed using inductive and deductive thematic analysis based on the framework of Illness Beliefs (chapter 5 and 6). The presentation of the data also included a narrative approach using both the quantitative and qualitative findings (chapter 7).
The findings from this study show that even at the end of their first year patients with IA come to their own acceptance, yet each travel in a different journey to reach this outcome. The journeys are determined by coping strategies as patients learn to adjust and adapt by renegotiation and battling through based on a pivot of their own perceived normality. Their definitions of adjustment and adaptation differed from those in the literature and showed lack of consensus across this cohort of patients. The journeys cannot be viewed in isolation but are determined also by social support and the need to be believed, with illness beliefs entwined.
From a clinical perspective facilitating communication and tailored education and support at the early stages may reduce distress, and promote flexible coping earlier. Future research needs to develop a greater understanding of these journeys by interviewing a larger cohort of patients and evaluating tailored support programmes.

Thesis Type Thesis
Institution Citation of emotions and beliefs from pre-diagnosis of inflammatory arthritis through the first 12 months. (Thesis). University of the West of England
Keywords adjustment and acceptance, long term conditions, qualitative research using hybrid methods

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