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.
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.
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.
Background: The deleterious impact upon the cognitive development of survivors of pediatric brain tumors (PBT) is well documented. Impairment in cognitive function is associated with reduced health-related quality of life (HRQoL), such that survivors of PBT report difficulties in multiple distinct domains and an overall reduced quality of life. Studies of the use of methylphenidate in survivors of PBT to alleviate impairment in cognitive functions have shown some success. The current study aimed to explore the impact upon HRQoL in survivors of PBT of a trial of psychostimulant medication. Method: Data were collected from 12 pediatric neuro-oncology patients aged 7–17 years receiving methylphenidate treatment. HRQoL was measured using the PEDS QL quality of life self-report measure and a semi-structured questionnaire-based interview. Results: Analyses of data demonstrates benefit to five domains associated with HRQoL: social, emotional, academic, physical, and cognition. Conclusion: Survivors of PBT reported favorable views as to the subjective benefit of methylphenidate on post-treatment impairment of HRQoL. This medication may offer the potential for restoration of a sense of ‘normality’ of function following cancer treatment in this clinical population.
Worldwide, the number of people living with diabetes is projected to reach 578 million by 2030. 1 Using data from the International Diabetes Federation Diabetes Atlas, diabetes prevalence is recorded as being higher in high-income (10.4%) countries and, alarmingly, one in two adults who are living with a form of diabetes are unaware they have
Increased morbidity and mortality rates are prominent issues among homeless individuals. To help reduce these health inequalities, dedicated senior mental and physical health nurses have been deployed to work within and alongside local statutory and voluntary organisations. This qualitative evaluation examined the impact of nurseled homeless healthcare in Warwickshire, United Kingdom. During January and February 2021, online semi-structured interviews were conducted with 17 professionals including the mental and physical homeless health nurses (n = 4), statutory health and local authority professionals (n = 4), and voluntary and community sector professionals (n = 9). Interviews were qualitatively analysed using inductive, reflexive thematic analysis. Data analysis identified three overarching themes related to the meaning, impact and future development of nurse-led homeless healthcare: (1) Nurse-led homeless healthcare and health inequalities, (2) The multi-agency approach of nurse-led homeless healthcare, and (3) Future development of nurse-led homeless healthcare. The findings confirm the benefits of homeless healthcare in reducing health inequalities and promoting a more accessible, flexible and person-centred approach to holistic care. Yet, prevailing organisational and system-level barriers were also identified as currently limiting the capacity, provision and practicalities of delivering nurse-led homeless healthcare. Recommendations were identified with international relevance and included: (i) continued implementation of person-centred healthcare for homeless individuals, (ii) strengthening of organisational collaboration and communication pathways to improve coordinated care, (iii) development of the managerial and structural aspects of provision, (iv) addressing limitations associated with scope and capacity to ensure that delivered healthcare is adequately intensive, (v) increased availability of clinical or therapeutic spaces, and (vi) implementation of long-term plans supported by evaluation and commissioning.
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