Hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD) are underdiagnosed hereditary connective tissue disorders requiring health care across specialties. Using mixed methods, we explored how parents have experienced children's health care for hEDS/HSD. Surveyed parents (N = 297) reported varying experiences, though professional understanding was negatively appraised by most parents. Themes identified from interviews (n = 13) were: (1) awareness and understanding are fundamental, (2) the importance of the therapeutic relationship, (3) limitations of healthcare systems, and (4) diagnostic labels are meaningful. Findings suggest that achieving person-centered care may broadly improve health care for families with hEDS/HSD.

Background Following the implementation of pandemic response measures, concerns arose regarding the impact for population health and wellbeing. Methods This study reports findings from a survey (N = 2510) conducted in Warwickshire (UK) during August and September 2020, and for the first time investigates behaviours which may worsen or mitigate the association between COVID-19-related stressors and wellbeing. Results Increased stressors were associated with lower mental wellbeing and higher loneliness. Participants with a mental health condition reported lower wellbeing, as did younger groups, women and participants not in employment. To cope with restrictions, more participants engaged in healthier behaviours over unhealthy behaviours, and relaxing reduced the association between stressors and poor wellbeing. Some participants reported increasing alcohol and unhealthy dietary behaviours to cope with restrictions, however, these behaviours did not mitigate the impact of COVID-19 stressors and were instead negatively associated with wellbeing. Around half of participants helped neighbours during the pandemic, a behaviour positively associated with wellbeing particularly among older adults. Conclusion These findings contribute understanding about how various positive and negative health behaviours may mitigate or worsen the impact of COVID-19 on wellbeing, and how public health interventions may effectively target behaviours and groups in similar populations.

ObjectiveIntegrated Care Systems (ICSs) have recently been implemented across England to better meet health and social care needs through partnership working between clinical commissioning groups, local authorities, and health and social care providers. This qualitative study aimed to explore insights into the COVID-19 response at an ICS level and inform recommendations for ICS development.Methods and analysisInterviews and focus groups were conducted with 19 senior health and social care professionals who were members of one ICS. A reflexive thematic analysis was conducted to develop key themes and recommendations for ICSs.ResultsWorking together across health and social care, responding to a prolonged crisis, managing expectations and developing the ICS formed the four master themes. Notable subthemes included changing professional roles and responsibilities, communicating and coordinating COVID-19 guidance, the availability of system resources, the local versus national contexts and a need to combat health inequalities.ConclusionThe unprecedented crisis of COVID-19 moved health and social care partners to work together like never before, and at a very quick pace. Our findings confirm that intentional collaboration must be maintained in leading and delivering effective ICSs. ICS partners, together with the public, must now agree a shared vision for health and social care as a priority. A long-term focus to improve population health and reduce health inequalities will require a cultural shift and will place a new type of demand on resource allocation and sourcing. It will also demand public health leadership, a fully coordinated infrastructure, and comprehensive, ongoing evaluation. In parallel to this, the well-being of the health and social care workforce will need to be addressed to build upon the lessons of COVID-19.