Finding stability in a new reality. Patient perspectives on early diagnosis and the importance of continuity in rheumatology nursing

Abstract

Background: Becoming ill with a chronic inflammatory joint disease (IJD) can profoundly affect an individual's everyday life, identity and sense of self. Despite major advances in rheumatology care and treatment outcomes, patients often experience ongoing physical, psychological and social challenges. Support from healthcare professionals and significant others is therefore essential. Person-centred care, grounded in an understanding of the patient's lifeworld and active participation in care, is recognised as both an ethical and practical approach in healthcare. However, this approach is not always consistently implemented in clinical practise, highlighting the continued need to strengthen person-centred strategies in rheumatology care. Aim: The overall aim in this thesis was to explore patients’ experiences of rheumatology nursing and everyday life during the first year following a diagnosis of chronic inflammatory joint disease. Methods: This thesis was based on two qualitative studies. Study I aimed to describe how patients with rheumatoid arthritis perceived and experienced person-centred care in nurse-led clinics over a 12-month period. Fifteen patients were interviewed, and the data were analysed using a phenomenographic approach to identify variations in how the patients perceived person-centred care. Study II aimed to describe how young adult patients with chronic IJDs experienced their daily lives and engaged with health care professionals in the first year following diagnosis. Data were collected through interviews with fourteen patients and analysed using qualitative content analysis. Results: The findings of the two qualitative studies were presented according to their respective analytical approaches. Study I identified three categories illustrating variations in how the patients understood and related to the regularly scheduled nurse-led encounters. Study II generated five categories describing young adults’ experiences of everyday life and health care during the first year after viii diagnosis. Both studies highlighted experiences grounded in the patients’ lifeworlds, emphasising the importance of person-centred care. Conclusion: Overall, the findings indicate that patients with chronic IJD can achieve stability in a new reality. Frequent nurse-led visits were perceived as promoting security, continuity and involvement in care. Young adults faced challenges in balancing health with education, work and social life, illustrating how the demands on this life stage influence self-management. This thesis contributes new knowledge on how structured nurse-led encounters strengthen patients’ confidence and sense of partnership and how transitions in life and personal needs affect the strategies young adults use to manage their conditions. These insights highlight the need for flexible, individualised support and organisational structures that accommodate diverse circumstances without compromising accessibility or sustainability.