| dc.description.abstract | Background: Rheumatoid Arthritis (RA) is a chronic condition with an auto-immune pathology which may present at any age. Since its recognition in the mid-nineteenth century medical science has been at the forefront of extensive investigations searching for effective treatments. At the end of the twentieth century pharmacotherapies and specific treatment strategies were identified to alter the immune response, thus improving the physiological outcomes in terms of increased functionality and longevity for individuals affected. RA is a biopsychosocialspiritual condition and therefore affects the whole person. Studies prior to advancements in treatments revealed that living with the condition was perceived as suffering, a burden and impacted upon selfhood. It was not known what the people who live with RA (PLRA) considered as their main concern since the treatment advances. Aim: The overall aim of this study was to generate a substantive grounded theory that explained how the participants processed their main concern when living with RA. Methodology: Grounded theory (GT) as developed by Strauss and Glaser (1967), and specifically Glasserian Grounded theory (GGT) as established by Glaser (1978) was used to identify how the participants processed their main concern. Participants who had RA for longer than three years were invited to participate. Twenty-nine (29) in-depth interviews were conducted in various community settings in the Northwest of Ireland. Further data was also collected from a recently published book about the lives of PLRA. Selective coding and theoretical sampling were used, in conjunction with the constant comparative method to identify a core category and subcategory that fitted with the data. Continuous memoing supported the ongoing analysis and memo sorting helped to identify the theoretical codes. Findings: The main concern for the participants in this study was identified as a Fear of Declining Self-Worth, which emerged in response to a confirmed diagnosis of RA, which signalled to the participants that they were going to become unable and dependant on others which negatively influenced their self-worth. The core category Negotiating Self-Worth explained how the participants continuously processed their main concern. Negotiating Self-Worth was operationalised in different awareness contexts which the participants created. The closed, limited, and open awareness contexts were further influenced by critical junctures of Flux, Vulnerability and Secure. These psychological states were the drivers in relation to awareness context, disclosure and progression over the three stages of the process. Insulating Self-Worth represents the first sub-core category. When participants enter this stage they are in a psychological state of Flux and are consumed with the psychosocial considerations of RA. The ongoing demands of concealing and repeated flare-ups, in addition to normal social concerns, become too much and a psychological state of Vulnerable was entered, at which point participants progressed to the second sub-core category Scoping Self-Worth. Progression in this stage was supported by psychosocial resources, which assisted the participants in increasing self-awareness and personal comfort with exploring previous knowledge of RA and problem solving. A high level of engagement supported the participants to reach a critical juncture of Secure and they progressed to the next stage Scoping Self-Worth. When there was a low level of engagement, the participants returned to the previous stage of Insulating Self-Worth and entered the FASP (Flurry of Activity and Self Pity cycle). Re-entering Scoping Self-Worth occurred when the participants gained insight into their cycle of behaviours. The engagement with psychosocial supports increased their self-confidence. This was key in the progression to Bolstering Self-Worth. The participants brought the insights and possibilities for being and living gained in Scoping Self-Worth into this final stage. Supportive Relationships and Positivity enabled the participants to reframe their ideas for living and, moreover, strengthened the psychological processes which stabilised and empowered the participants to maintain their new vision. At this point RA was placed in the context of their whole life, that is, alongside the other aspects of living. Conclusion: The theory that emerged emphasises that sociocultural understandings about chronic conditions do not alter in response to advances in science. For people diagnosed with a chronic condition, those previously held understandings will prevail until they are sought out and addressed with appropriate supports. This study clearly demonstrates that with supports PLRA can find purpose and meaning beyond their diagnosis. Societal approaches to chronic conditions must, therefore, acknowledge the impact of the psychosocial perspectives and find ways to support people in achieving a fulfilled life. Negotiating Self-Worth is a three staged process with critical junctures and illustrates variation enabling it to be understood as a Basic Social Psychological Process (BSPP). | en |
