Abstract
Background
Services for patients with multiple long-term conditions (MLTC) operate within fragmented and poorly coordinated systems but how care experiences, perceptions, and behaviours emerge and adapt in response to service changes and increasing system complexity is poorly understood.
Aim
To explore how experiences and perceptions of care for patients with MLTC and their carers emerge and evolve within a complex adaptive care system to identify opportunities for better care.
Design and setting
Qualitative analysis of six focus groups with 28 patients with MLTC and carers in four Scottish integrated health and social care partnerships was undertaken.
Method
Data were collected between February and May 2024. Abductive analysis informed by a complex adaptive systems lens was used.
Results
Care for patients with MLTC emerged through dynamic, reciprocal interactions between patients, carers, professionals, and organisational structures. Service changes introduced to manage rising demand were often perceived as misaligned with patients’ complex needs, prompting patients and carers to modify their behaviours to navigate access barriers. Care experiences were unpredictable, shaped by reinforcing feedback loops in which small personal interactions had a disproportionate effect on trust and engagement. Informal care expanded to fill system gaps, with family members assuming coordination and advocacy roles. Clinical empathy and relational continuity of care acted as key stabilising influences within fragmented care systems.
Conclusion
Service changes intended to improve care efficiency can inadvertently destabilise care and shift the burden onto patients with MLTC and their carers, affecting perceived care quality and relational continuity. The quality of interactions and relationships between agents shape patients’ perceptions of care and future engagement.