Aim: The overall aim of this thesis is to describe how it is to live, with and being cared for, recurrent supraventricular tachycardia, with emphasis on the patient perspective and how to develop care given.

Approach and Method: The thesis, which has a theoretical foundation in Caring Science, takes an overall inductive approach based on the patient perspective. The lifeworld theory has been used to describe and understand the patient perspective, although several scientific methods have been used, in order to answer the specific research question. Study I was quantitative with a retrospective descriptive design, and II, III, and IV was qualitative with descriptive designs. Study I describe patients’ unplanned visit (2719) at healthcare facilities with symptoms of tachycardia, analysed with descriptive and comparative statistics. Study II describes catheter ablation as experienced when being treated awake for supraventricular tachycardia (SVT). Study III describes patients’ participation in their own health and care process. Both Studies II and III were based on reflective lifeworld approach and interviews (12 and 17, respectively study), using a phenomenological method. Study IV was based on a structured two-phase experience-based co-design (EBCD) methodology, involving participatory workshops with patients (4) and collaborative process development with healthcare providers (7) from specialist care, to reflect on experiences of care to capture and prioritize areas for improvements. A reflexive thematic analysis was used to analyse data.  

Main findings: There is a significant difference in total visits in healthcare centres and/or emergency departments by patients of different sexes. Further, the referral rate is low, especially from healthcare centres to specialist care (cardiologists). Patients undergoing catheter ablation while awake experiences a range of emotions, including reliance on others’ expertise, being actively passive, and striving for a restored health and well-being. The process of undergoing catheter ablation serves as a confirmation of having a physically curable condition, transforming the future from being filled with obstacles due to the tachycardia into an everyday of possibilities. Patient participation involves trust to healthcare that is hampered by lack of continuity. This discontinuity leaves patients with the experience that their lives are on hold in an “existential waiting room” where they trust and hope for treatment for an unpredictable condition that significantly impacts daily life. Participation manifests as a sense of trust in being taken seriously as a whole person, bringing hope for help with their unreliable heart. Reflexive mapping highlighted areas where services were not corresponding with patients’ need and three themes derived: Confidence-building support, Tailored information, and Substantial communication.  

Conclusions: This thesis’s findings highlight the patients’ need of support and involvements in all levels of healthcare, emphasizing the importance of addressing sex- and age-related differences to ensure equitable care. Repeated interactions with various healthcare providers results in a fragmented