“They seemed to be like cogs working in different directions”: a longitudinal qualitative study on Long COVID healthcare services in the United Kingdom from a person-centred lens

Background: Long COVID (LC) has presented significant challenges to healthcare, as people with persistent and fluctuating symptoms often face prolonged uncertainty when seeking medical support. Negative experiences with healthcare systems and trauma from previous health conditions may further compound this uncertainty. Despite an increasingly rich picture of LC healthcare challenges being captured, qualitative studies on LC so far have primarily focused on individual experiences rather than examining the structural aspects of healthcare Methods To better understand the healthcare experiences of those with LC, we conducted a longitudinal qualitative study with 80 participants and over 10 healthcare practitioners in the UK. We collected a total of 178 interviews (with some attrition) across two rounds, from November 2021 to March 2022, and from June to October 2022. Results Adopting a framework of person-centredness that acknowledges and supports interconnected individual, relational, and existential needs in healthcare, we explored LC healthcare experiences across primary, secondary, and specialist integrated care. Through this approach, we identified three overarching themes. Theme 1 focuses on the continued hurdle of accessing primary care as the first point of contact for LC healthcare; theme 2 highlights the complexity of navigating secondary care; and theme 3 captures the unique challenges of propagating LC integrated care. These themes were interconnected, with individuals often bouncing between systems and practitioners cooperating across their remits. Conclusion Using a person-centred lens allowed us to identify the multifaceted needs of LC sufferers and understand how these needs shape individual health and healthcare experiences in a nuanced way, considering their identity as a key source shaping their healthcare needs. The study aimed to explore how person-centred care can be delivered more effectively and sustainably across different healthcare settings and over time to better meet the needs of LC sufferers.