Abstract
Background: Globally, health and care systems have long been recognized as fragmented and disease-centered, resulting in poor quality care and adverse outcomes for many patients. Integrated care has emerged as a promising solution to improve healthcare delivery by promoting person-centered, coordinated, and continuous care. There has been no shortage of commitments to integrated care in Ireland. In Northern Ireland, the Bengoa report and subsequent initiatives have aimed to transition health and care services towards Integrated Care Systems (ICS), emphasizing multidisciplinary and coordinated care. Similarly, the Republic of Ireland has implemented six new Regional Health Areas (RHAs) to enhance the integration of health and social care services. Despite these commitments, challenges persist in achieving truly person-centered care. Evaluation of such programs are rarely undertaken or reported, and the limitations of current quantitative evaluation methods are well documented with a recognition of the need for more qualitative and mixed-methods research. This study aims to explore a novel approach to using lived experience to provide an insight into integrated care services.
Approach: This research employs qualitative deductive content analysis (QDCA) to explore the author's personal experience with the healthcare system during their parent illness and subsequent death. The study uses the your voice matters; patient narrative definitions as a framework to assess whether the integrated care needs of the author's parent were met. Data were collected from the author reflective diary, WhatsApp messages, care notes, and emails over an eight-week period. These data sources were transcribed, coded, and analyzed to identify themes related to the patient healthcare experience, confidence in care, and journey through healthcare.
Results: The analysis revealed significant gaps in communication, information provision, coordination of care, and respect for patient preferences. Specifically, there was a lack of continuity in care services, insufficient support and information, and inadequate responses to the patient evolving needs. The study found that the care provided did not meet the criteria for person-centred coordinated care, as outlined by the patient narrative project.
Implications: This case study underscores the need for improved coordination, communication, and patient engagement in care delivery. It highlights the importance of using patient experience data to inform and enhance healthcare practices and policies. By focusing on patient-centeredness rather than system-centeredness, healthcare systems can better meet the needs and preferences of patients. The findings call for a reevaluation of integrated care initiatives to ensure they align more closely with the principles of person-centred care, ultimately aiming to achieve a more effective and compassionate healthcare system.