Public policies stress greater inclusion of disabled people in the labour market and suggest ways to implement accommodative measures to these ends. Often missing from this literature is the ...experiences of disabled people in labour markets. This article reports results from a qualitative study conducted in 2005 and 2006 consisting of one-to-one and focus group interviews with 56 disabled individuals participating in employment training programmes in Calgary and Regina, Canada. Findings suggest the presence of workplace and employer discrimination and labelling as primary factors impeding respondents' success in securing and maintaining employment in the labour market. The 56 respondents provide strong evidence that perceptions of disability have a greater impact on their inability to maintain and secure employment than does the lack of accommodative practices and measures in the workplace.
•N-of-1 studies may be useful in studying rare CFTR mutations in patients with CF.•The safety profile of ivacaftor was consistent with that of prior clinical trials.•Ivacaftor is effective in ...patients with residual-function CFTR mutations.
Ivacaftor shows benefit in patients with cystic fibrosis (CF) and CFTR mutations associated with residual CF transmembrane conductance regulator (CFTR) function. Here we further assess the effect of ivacaftor in such patients using an N-of-1 study design.
Patients aged ≥12 years with CF with clinical or molecular evidence of residual CFTR function were randomized to 1 of 4 treatment sequences for two 4-week, double-blind crossover cycles (each divided into 2 weeks of ivacaftor treatment and placebo) followed by 8 weeks of open-label ivacaftor treatment. The primary endpoint was absolute change from cycle baseline of percent predicted forced expiratory volume in 1 s (ppFEV1) after 2 weeks of treatment with ivacaftor relative to placebo.
Absolute change (SD) from study baseline in ppFEV1 favored ivacaftor by 2.3 (1.0) percentage points (95% credible interval, 0.4–4.1) after 2 weeks of treatment. Absolute mean change (SD) from open-label baseline (defined as day 1 of the open-label ivacaftor treatment period) in ppFEV1 after 8 weeks of treatment was 4.7 (4.2) percentage points (P<.0001). Safety of ivacaftor was consistent with that observed in prior studies.
Ivacaftor improved lung function during the double-blind and open-label treatment periods in patients with CF and CFTR mutations associated with residual CFTR function (ClinicalTrials.gov, NCT01685801).
NHS Blood and Transplant (NHSBT) Tissue and Eye Services (TES) save and improve the lives of thousands of patients every year.The roles and responsibilities of the nurses working in TES are diverse. ...Across the TES supply chain nursing roles are pivotal.They range from raising awareness of tissue donation and creating robust referral systems through to skilled communication with recently bereaved families over the telephone, as well as advanced nursing practice in clinical decision-making regarding suitability for transplantation and research.In the UK, around 25 million people have registered to donate organs and tissues. However, there is poor understanding around the tissue-donation process.Hospital development nurse practitioners (HDNPs) provide a professional link between service Providers/users and TES so that effective working partnerships can be developed. HDNPs ensure that there is a professional link from TES to support, educate and advise a wide range of health professionals about tissue donation. They are a visible and respected presence in the areas within which they work and continuously build on these successful working partnerships and contractual agreements to increase donor referrals.Consistent findings from a global body of research for organs and tissues over the past 15 years shows that there are key factors that influence family decision making (Sque et al, 2008; Siminoff et al, 2010; Long-Sutehall et al, 2012; Sque et al, 2018).Evidence suggests that key factors include:• Failure by health professionals to recognise potential donors• Reluctance of health professionals to talk about tissue donation• Family/next of kin not agreeing to donation due to concerns about the donation process (for example, the post donation appearance of the donor) or personally held views.The role of the HDNP aims to overcome some of these barriers and work towards increasing the number of referrals of potential tissue donors. This includes creating robust referral systems, raising awareness, educating, and sharing information about tissue donation so that patients and their families can make an informed choice about donating tissue for transplant and/or research. HDNPs work closely with selected NHS trusts at strategic levels to implement referral systems. This includes working alongside senior colleagues such as chief executives, directors of nursing, end-of-life-care specialists and coroners.HDNPs work closely with selected trusts in developing automatic referral systems whereby 100% of adult deaths are referred so nurses are able to reach many more families to discuss the option of donating tissue.
•Non-invasive, culture-independent markers for NTM infection are needed for the CF population.•Lipoarabinomannan (LAM), a cell wall lipoglycan, is shown to only be present in urine of CF patients ...with a history of positive sputum cultures for NTM.•Urine LAM may serve as a sensitive marker to screen for the absence of NTM infection in people with CF.
Individuals with Cystic fibrosis (CF) are the most vulnerable population for pulmonary infection with nontuberculous mycobacteria (NTM). Screening, diagnosis, and assessment of treatment response currently depend on traditional culture techniques, but sputum analysis for NTM in CF is challenging, and associated with a low sensitivity. The cell wall lipoarabinomannan (LAM), a lipoglycan found in all mycobacterial species, and has been validated as a biomarker in urine for active Mycobacterium tuberculosis infection.
Urine from a CF cohort (n = 44) well-characterized for NTM infection status by airway cultures was analyzed for LAM by gas chromatography/mass spectrometry. All subjects with positive sputum cultures for NTM had varying amounts of LAM in their urine. No LAM was detected in subjects who never had a positive culture (14/45). One individual initially classified as NTM sputum negative subsequently developed NTM disease 657 days after the initial urine LAM testing. Repeat urine LAM testing turned positive, correlating to her positive NTM status. Subjects infected with subspecies of M. abscessus had greater LAM quantities than those infected with M. avium complex (MAC). There was no correlation with disease activity or treatment status and LAM quantity. A TB Capture ELISA using anti-LAM antibodies demonstrated very poor sensitivity in identifying individuals with positive NTM sputum cultures.
These findings support the conclusion that urine LAM related to NTM infection may be a useful screening test to determine patients at low risk for having a positive NTM sputum culture, as part of a lifetime screening strategy in the CF population.
Long-term survivors of cystic fibrosis (CF) (age > 40 yr) are a growing population comprising both patients diagnosed with classic manifestations in childhood, and nonclassic phenotypes typically ...diagnosed as adults. Little is known concerning disease progression and outcomes in these cohorts.
Examine effects of age at diagnosis and gender on disease progression, setting of care, response to treatment, and mortality in long-term survivors of CF.
Retrospective analysis of the Colorado CF Database (1992-2008), CF Foundation Registry (1992-2007), and Multiple Cause of Death Index (1992-2005).
Patients with CF diagnosed in childhood and who survive to age 40 years have more severe CFTR genotypes and phenotypes compared with adult-diagnosed patients. However, past the age of 40 years the rate of FEV(1) decline and death from respiratory complications were not different between these cohorts. Compared with males, childhood-diagnosed females were less likely to reach age 40 years, experienced faster FEV(1) declines, and no survival advantage. Females comprised the majority of adult-diagnosed patients, and demonstrated equal FEV(1) decline and longer survival than males, despite a later age at diagnosis. Most adult-diagnosed patients were not followed at CF centers, and with increasing age a smaller percentage of CF deaths appeared in the Cystic Fibrosis Foundation Registry. However, newly diagnosed adults demonstrated sustained FEV(1) improvement in response to CF center care.
For patients with CF older than 40 years, the adult diagnosis correlates with delayed but equally severe pulmonary disease. A gender-associated disadvantage remains for females diagnosed in childhood, but is not present for adult-diagnosed females.
The following studies of Charles Darwin's influence on Victorian arts are reviewed : (1) "Endless forms : Charles Darwin, natural science and the visual arts," edited by Diane Donald and Jane Munro ...(Fitzwilliam Museum/Yale Center for British Art/Yale University Press, 2009); and (2) "Visualizing the unseen : imagining the unknown, perfecting the natural : art and science in the 18th and 19th centuries," edited by Andrew Graciano (Cambridge Scholars Publishing, 2008).
Purpose
– Mentoring and coaching are key strategies employed in workplace learning and are perceived as effective ways to provide learner support. However, there is a paucity of evidence of how ...research outcomes may have influenced these practices and to what extent they have benefited those involved in this process. The purpose of this paper is to demonstrate that research on mentoring and coaching can in fact result in beneficial impacts on education professionals’ learning and development.
Design/methodology/approach
– The paper critically reflects on the process of developing an impact case study submitted to the UK Research Excellence Framework 2014. It seeks to make explicit the close relationship that exists between research and professional practice and how evidence of any resulting impact of research on user communities can be identified, collected and verified.
Findings
– In describing the process of developing such an impact case study the article focuses on three key aspects: identifying a suitable case; meeting the criteria of high quality research; and evidencing impact. It highlights the importance of a collective, cross-professional approach and draws attention to the nexus that needs to be established between user and research communities, between academics and professional practitioners, in order to generate evidence of research impact in the field.
Originality/value
– This paper brings to light the benefits research in mentoring and coaching can have on policy and practice, specifically in terms of education professionals’ workplace learning and continuing professional development in a local and international context.
Pathways to and from homelessness were examined from the perspective of people who were both employed and homeless in Calgary, Alberta. Based on data collected through semi-structured open-end ...interviews (n = 61) with employed homeless people (N estimated at 2,400), we found that respondents identified aspects of five predominant social relationships that had the greatest impact on their present homeless situation: relationships with friends and family, acquaintances in shared accommodation, landlords and employers, other homeless people, and the social service delivery system. The findings provide a model for beginning to understand the complex social communities in which homelessness exists. Further research needs to explore the relationship between service providers and individuals' other social relationships and the role those can play in finding a pathway from homelessness.
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