Social support needs for equity in health and social care: a thematic analysis of experiences of people with chronic fatigue syndrome/myalgic encephalomyelitis

BACKGROUND: Needs-based resource allocation is fundamental to equitable care provision, which can meet the often-complex, fluctuating needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). This has posed challenges both for those providing and those seeking support providers, in building shared understanding of the condition and of actions to address it. This qualitative study reports on needs for equity in health and social care expressed by adults living with CFS/ME. METHODS: The participants were 35 adults with CFS/ME in England, purposively selected to provide variation in clinical presentations, social backgrounds and illness experiences. Accounts of experienced needs and needs-related encounters with health and social services were obtained through a focus group (n = 6) and semi-structured interviews (n = 35). These were transcribed and needs related topics identified through data-led thematic analysis. FINDINGS: Participants emphasised needs for personalised, timely and sustained support to alleviate CFS/ME impacts and regain life control, in three thematic areas: (1) Illness symptoms, functional limitations and illness management; (2) practical support and social care; (3) financial support. Access of people with CFS/ME to support from health and social services was seen to be constrained by barriers stemming from social, cultural, organisational and professional norms and practices, further heightened for disadvantaged groups including some ethnic minorities. These reduced opportunities for their illness to be explained or associated functional limitations and social disadvantages to be addressed through social support. Participants sought more understanding of bio-psycho-social aspects of CFS/ME, of felt needs of people with CFS/ME and of human rights and disability rights, for providing person-centred, equitable care. CONCLUSIONS: Changes in attitudes of health practitioners, policy makers and general public and more flexibly organised health and social care provision are needed to address equity issues in support needs expressed by people with CFS/ME, to be underpinned by research-based knowledge and communication, for public and professional education. Policy development should include shared decision-making and coordinated action across organizations working for people with CFS/ME, human rights and disadvantaged groups. Experiences of people with CFS/ME can usefully inform an understanding of equity in their health and social care

A qualitative analysis of experiencing a nature-related residential weekend workshop for women

Includes bibliographical references (pages [85]-[89])This thesis investigated women’s experience of a nature-related residential workshop using the methodology of phenomenology. Women are participating in naturerelated activities, but, due to limited research, it is unclear what those experiences may mean to them. Therefore, this study sought to discover and describe those experiences. The researcher designed and advertised a three-day nature-related workshop which incorporated several spiritual aspects of nature through indigenous teachings, rituals and ceremonies. Fifteen women from the general public attended the workshop; thirteen of those volunteered to participate in the research. These thirteen completed a written openended assessment of their experience and three women participated in formal interviews. Three interviews were completed within days of the workshop and a second interview was conducted four weeks later with the same three participants. This study found that each participant interviewed experienced varying degrees of 1) anxiety/fear, 2) connection, 3) insight/discovery, 4) positive feeling and 5) challenge. They described being at the workshop as a “once in a lifetime” opportunity and felt “blessed and privileged” to be there. Connections, insights and discoveries were made to nature, other women, ancestors, native culture, and the group. Some connections were spiritual and so deep they “touched some core within.” Participants felt “empowered and strengthened” by their accomplishments, and felt good when they a) took leadership roles, b) felt prepared with proper attire, c) helped others, d) received kindness shown to them, ABSTRACT i e) worked together as a group, f) identified with others, g) shared stories and laughter, and h) participated in ceremonies and rituals. They also felt good that it was a women’s group. The workshop components which were successful for this group included: a) the f challenging hike to the remote lodge, b) spending time in a wilderness setting, c) allowing plenty of unstructured time, d) participating in ceremonies and rituals, e) building community through cooperative activities and sharing circles, f) sharing good meals, and g) experiencing the respectful leadership style. These findings provide useful insights and may assist professionals either designing or delivering nature-related workshops for women. This study helps to understand how women experience a nature-related workshop.M.S. Ed. (Master of Education

GLI1 repression of ERK activity correlates with colony formation and impaired migration in human epidermal keratinocytes

Basal cell carcinoma (BCC) of the skin is a highly compact, non-metastatic epithelial tumour type that may arise from the aberrant propagation of epidermal or progenitor stem cell (SC) populations. Increased expression of GLI1 is a common feature of BCC and is linked to the induction of epidermal SC markers in immortalized N/Tert-1 keratinocytes. Here, we demonstrate that GLI1 over-expression is linked to additional SC characteristics in N/Tert-1 cells including reduced epidermal growth factor receptor (EGFR) expression and compact colony formation that is associated with repressed extracellular signal-regulated kinase (ERK) activity. Colony formation and repressed ERK activity remain evident when EGFR is increased exogenously to the basal levels in GLI1 cells revealing that ERK is additionally inhibited downstream of the receptor. Exposure to epidermal growth factor (EGF) to increase ERK activity and promote migration negates GLI1 colony formation with cells displaying an elongated, fibroblast-like morphology. However, as determined by Snail messenger RNA and E-cadherin protein expression this is not associated with epithelial–mesenchymal transition (EMT), and GLI1 actually represses induction of the EMT marker vimentin in EGF-stimulated cells. Instead, live cell imaging revealed that the elongated morphology of EGF/GLI1 keratinocytes stems from their being ‘stretched’ due to migrating cells displaying inefficient cell–cell detachment and impaired tail retraction. Taken together, these data suggest that GLI1 opposes EGFR signalling to maintain the epithelial phenotype. Finally, ERK activity was predominantly negative in 13/14 BCCs (superficial/nodular), indicating that GLI1 does not routinely co-operate with ERK to induce the formation of this common skin tumour

Antibiotic Review Kit for Hospitals (ARK-Hospital): a stepped wedge cluster randomised controlled trial

Background: Strategies to reduce antibiotic overuse in hospitals depend on prescribers taking decisions to stop unnecessary antibiotics. There is limited evidence on how to support this. We evaluated a multifaceted behaviour change intervention (ARK) designed to reduce antibiotic use among adult acute/medical inpatients by increasing appropriate decisions to stop antibiotics at clinical review. Methods: We performed a stepped-wedge, cluster (hospital)-randomised controlled trial using computer-generated sequence randomisation of 39 hospitals in 7 calendar-time blocks in the United Kingdom (25/September/2017-01/July/2019). Randomised implementation date was concealed until 12 weeks before implementation, when local preparations were designed to start. Co-primary outcomes were monthly antibiotic defined-daily-doses (DDD) per adult acute/medical admission (hospital-level, superiority) and all-cause 30-day mortality (patient level, non-inferiority, margin 5%). Sites were eligible if they admitted non-elective medical patients, could identify an intervention “champion”, and provide study data. Sites werefollowed for at least 14 months. Intervention effects were assessed using interrupted timeseries analyses within each site, estimating overall effects through random-effects meta analysis, with heterogeneity across prespecified potential modifiers assessed using meta regression.Trial registration: ISRCTN12674243.Findings: Adjusted estimates showed reductions in total antibiotic DDDs per acute/medicaladmission (-4.8% per year, 95% CI: -9.1%,-0.2%) following the intervention. Among7,160,421 acute/medical admissions, there were trends towards -2.7% (95% CI: -5.7%,+0.3%) immediate and +3.0% (95% CI: -0.1%,+6.2%) sustained changes in adjusted30-day mortality. Site-specific mortality trends were unrelated to the site-specific magnitudeof antibiotic reduction (Spearman’s ρ=0.011, p=0.949). Whilst 90-day mortality oddsappeared to increase (+3.9%, 95% CI: +0.5%,+7.4%), this was attenuated excludingadmissions after COVID-19 onset (+3.2%, 95% CI:-1.5%,+8.2%). There was no evidence ofintervention effects on length-of-stay (p>0.4).Interpretation: The weak, inconsistent intervention effects on mortality are likely explained by the post-implementation onset of the COVID-19 pandemic. The ARK intervention resulted in sustained, safe reductions in antibiotic use among adult acute/medical inpatients. Funding: NIHR Programme Grants for Applied Research, RP-PG-0514-20015