Treatment experiences, preferences, and expectations for cognitive impairments in Long COVID among Chinese young and older adults : a constructivist grounded theory study

Shan, Dan and Crawford, Trevor and Holland, Carol (2025) Treatment experiences, preferences, and expectations for cognitive impairments in Long COVID among Chinese young and older adults : a constructivist grounded theory study. BMC Medicine. ISSN 1741-7015 (In Press)

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Abstract

Background Cognitive impairments associated with long COVID disrupt daily functioning and psychological well-being. While increasing research has examined prevalence and mechanisms, little is known about patients’ treatment experiences, preferences, and expectations. In the absence of validated effective treatments, integrating these perspectives is essential for guiding research priorities and clinical trial design. In China, where long COVID is an emerging public health concern, awareness of cognitive impairments remains limited and access to specialised care is inadequate. Considering potentially substantial differences in baseline health and treatment expectations between young and older adults, this study aimed to explore and compare their perspectives using a qualitative approach. Methods We adopted constructivist grounded theory to capture participants’ lived experiences and develop a theory grounded in their narratives. Semi-structured online interviews were conducted with 23 individuals recruited via Chinese social media long COVID mutual aid groups, including 10 young adults (18–39 years) and 13 older adults (≥60 years). Theoretical sampling guided recruitment and iterative analysis through initial, focused, and theoretical coding, leading to the development of a framework explaining treatment preferences and expectations. Results All participants reported cognitive impairments based on self-perception, with no formal medical diagnoses. We constructed a theoretical framework of “Individualised and Dynamic Adaptation to Cognitive Challenges”. Preferences and expectations could be shaped by age, symptom severity, prior management experiences, lifestyle, doctor–patient interactions, and health literacy. Young adults showed a strong preference for non-pharmacological strategies, including self-directed approaches and emotional support to address stigma. Older adults emphasised a balanced use of pharmacological and non-pharmacological interventions, supported by family and structured routines, while expressing holistic expectations that encompassed cognitive, physical, and emotional well-being. Across both groups, improved sleep and psychological health were consistently emphasised. Conclusions Age-specific differences highlighted the heterogeneity of long COVID experiences and underscored the need for dynamic, patient-centred approaches. Tailored interventions that integrate patient perspectives may enhance care quality and outcomes. Holistic care, particularly for older adults who may face additional comorbidities and functional challenges, is essential. In China, increasing awareness among the public and healthcare providers, reducing stigma, and addressing inequalities in care access should be prioritised.