“We need to be believed": A qualitative interview study on the Hertfordshire (UK) Long Covid and Physical Activity Study

Background The Covid-19 pandemic has led to the emergence of Long Covid, a complex multisystem condition characterised by persistent symptoms lasting for at least two months. This qualitative study evaluates the impact and experiences of a community-based physical activity study for individuals with Long Covid in Hertfordshire, UK. Methods A semi-structured qualitative interview study was conducted with a purposively selected sample of eleven participants, including eight service users and three health professionals involved in the study. The data corpus was collected from December 2023 to August 2024. Data were analysed thematically using Braun and Clarke’s six phase framework to explore the lived experiences of individuals with Long Covid and the perceived influence of physical activity on their symptoms and overall well-being. Results The analysis yielded three primary themes: (1) Leadership, Collaboration, and Community Engagement; (2) Tailored and Holistic Approaches; and (3) Barriers, Stigma, and Lack of Recognition. The study highlighted the critical importance of tailored physical activities, multidisciplinary collaboration, and community engagement. Participants reported tangible improvements in their physical and mental health. However, these benefits were contextualised by significant challenges, including the management of post-viral fatigue, the navigation of systemic barriers, and a pervasive feeling of not being believed by health practitioners and society. Several participants commented on the disruption that Long Covid has had on their life journey. Conclusion The findings suggest that structured and highly personalised physical activity initiatives can offer benefits to individuals with Long Covid. However, the study strongly underscores the profound and detrimental impact of stigma and disbelief on the patient experience. For such interventions to succeed, they must be situated within a broader ecosystem of care that actively acknowledges and addresses these systemic barriers and validates peoples’ experiences and addresses the biographical impact of Long Covid. Sustainable funding and continuous, validating support are essential for the long-term success of such initiatives.