ObjectiveTo explore the experiences of people living with long COVID and how they perceive the healthcare services available to them.DesignQualitative systematic review.Data sourcesElectronic literature searches of websites, bibliographic databases and discussion forums, including PubMed LitCovid, Proquest COVID, EPPI Centre living systematic map of evidence, medRxiv, bioRxiv, Medline, Psychinfo and Web of Science Core Collection were conducted to identify qualitative literature published in English up to 13 January 2021.Inclusion criteriaPapers reporting qualitative or mixed-methods studies that focused on the experiences of long COVID and/or perceptions of accessing healthcare by people with long COVID. Title/abstract and full-text screening were conducted by two reviewers independently, with conflicts resolved by discussion or a third reviewer.Quality appraisalTwo reviewers independently appraised included studies using the qualitative CASP (Critical Appraisal Skills Programme) checklist. Conflicts were resolved by discussion or a third reviewer.Data extraction and synthesisThematic synthesis, involving line-by-line reading, generation of concepts, descriptive and analytical themes, was conducted by the review team with regular discussion.ResultsFive studies published in 2020 met the inclusion criteria, two international surveys and three qualitative studies from the UK. Sample sizes varied from 24 (interview study) to 3762 (survey). Participants were predominantly young white females recruited from social media or online support groups. Three analytical themes were generated: (1) symptoms and self-directed management of long COVID; (2) emotional aspects of living with long COVID and (3) healthcare experiences associated with long COVID.ConclusionsPeople experience long COVID as a heterogeneous condition, with a variety of physical and emotional consequences. It appears that greater knowledge of long COVID is required by a number of stakeholders and that the design of emerging long COVID services or adaptation of existing services for long COVID patients should take account of patients’ experiences in their design.

BackgroundThis paper reports the results of the evaluation of the Scottish Quality and Safety Fellowship (SQSF)—a 10-month, lead-level international educational programme established in 2008 with the overarching aim of developing clinicians with advanced quality improvement knowledge, technical ability and essential leadership skills. The evaluation explores four levels of educational and practice outcomes associated with (1) the reaction of fellows to SQSF participation, (2) learning gained, (3) subsequent behaviour changes and (4) the overall impact on national and international level capability and capacity building.MethodsA theory-informed multi-method design was applied using (1) a search and review of the SQSF organisational database to tabulate personal, professional and demographic characteristics; (2) semi-structured telephone interviews with 16 participants using purposive and self-selected sampling; and (3) a cross-sectional online evaluation survey across all 10 cohorts involving 222 fellowsResultsSQSF was positively perceived as a high-quality learning experience containing a well-balanced mix of theory and practice, with a majority of respondents reporting career changing benefits. Most participants reported improved social, behavioural and emotional skills, knowledge and attitudes and, with sustained support of their host organisations, were able to apply and share learning in their workplace. The impact of the SQSF on a wider national and international level capability and capacity was both mediated and moderated by a wide range of interrelated contextual factors.ConclusionsThis multi-method evaluation demonstrates that SQSF has achieved significant positive outcomes for the great majority of participants. Some tentative recommendations are provided with the aim of further enhancing fellowship content, delivery, transfer and future evaluations of wider impacts at regional, national and international health system levels.

Healthcare worldwide faces severe quality and cost issues, and the search for sustainability in healthcare establishes a grand challenge. Public interest is growing in a systemic re-conceptualizing of healthcare, from primarily a consumerist problem of individual need for treatment to a need for communities themselves to become more effective in systemic prevention, coping and caring. In community led approaches, scarce resources are moved away from ever-increasing consumerist services to empower, develop and enable communities to plan their own health and community improvements in mutually interdependent patterns of care often seen as 'co-production'. This approach is exemplified by the innovative NUKA system of community led healthcare which originated in Alaska and which was trialled in Scotland in 2012, where it did not achieve similar acclaim as in the United States. The Scottish NUKA trial was due to run for six months and initially appeared to be working well, but opposition from professionals meant the trial was ended early. Our research found that omitting to account for the strong professional identity of GPs and other practice staff was instrumental in the failure of the trial. Beyond deficiencies inadequately considering professional identities, the trial also failed to engage the community and its patients as owners and architects of the system. We argue that the root cause of these problems, was a more general critical systemic failure to manage participatory boundaries and associated identities. Community Operational Research practitioners have developed relevant theories, methodologies and methods to address issues of participation and identity, so could make a significant contribution to opening up new solutions for community led healthcare.

Supportive interventions are needed for the family and carers of people with multiple sclerosis. A rapid realist review and realist evaluation explored what helps, who it helps, when and how. Literature analysis was synthesised with a thematic analysis of qualitative interviews and focus groups with 49 family and carers of people with multiple sclerosis. The resulting model summarised a family of interventions that could help people develop their capabilities and expand their resources, resulting in more positive outcomes. This may prevent or delay a ‘tipping point’ where capacity to care is overwhelmed by caring roles.