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1.
DIS (Des Interact Syst Conf) ; 2021: 1668-1681, 2021 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-34541585

RESUMO

Through a process of robust co-design, we created a bespoke accessible survey platform to explore the role of co-researchers with learning disabilities (LDs) in research design and analysis. A team of co-researchers used this system to create an online survey to challenge public understanding of LDs [3]. Here, we describe and evaluate the process of remotely co-analyzing the survey data across 30 meetings in a research team consisting of academics and non-academics with diverse abilities amid new COVID-19 lockdown challenges. Based on survey data with >1,500 responses, we first co-analyzed demographics using graphs and art & design approaches. Next, co-researchers co-analyzed the output of machine learning-based structural topic modelling (STM) applied to open-ended text responses. We derived an efficient five-steps STM co-analysis process for creative, inclusive, and critical engagement of data by co-researchers. Co-researchers observed that by trying to understand and impact public opinion, their own perspectives also changed.

2.
Br J Learn Disabil ; 49(3): 271-281, 2021 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-34566467

RESUMO

BACKGROUND: As part of 'The Hub' project at Wellcome Collection, a team of eight co-researchers with learning disabilities alongside academics created an online survey to challenge public understanding of learning disabilities. Using creative and arts-based methods, co-researchers remotely co-analysed the survey results amid Covid-19 lockdown challenges. Here, we explore our unexpected 'transition' journey from the physical 'Hub' to the digital space. METHODS: We organised 20 sessions at 'The Hub' and used audio/video/photo recordings to 'capture' key moments. With the lockdown, we ensured that every co-researcher had access to and support for digital technologies. Throughout 2020, we organized 28 Zoom meetings involving all co-researchers. In June, Lilly and Sue conducted Zoom interviews with the co-research team to reflect on our 'transition' journey. In this creative video-form submission accompanied by an accessible report, Lilly puts together a story of how we transitioned and felt throughout this process. FINDINGS: We identify that trust and the social bonds established at 'The Hub' are the key components of our transition to the digital environment. There is the tension between longing for in-person contact and trying to make the most out of the situation to maintain these relationships. At the heart of this is the motivation to 'change the world' and the strive for social justice. Having time and opportunity to improve, and co-researchers' steady growth in confidence, are equally important. CONCLUSIONS: The determination for maintaining friendships among co-researchers and the motivation to 'change the world' overcome Covid-19 related challenges in continuing co-research. SUMMARY: [Table: see text].

3.
Artigo em Inglês | MEDLINE | ID: mdl-32944718

RESUMO

Public attitudes towards learning disabilities (LDs) are generally reported as positive, inclusive and empathetic. However, these findings do not reflect the lived experiences of people with LDs. To shed light on this disparity, a team of co-researchers with LDs created the first online survey to challenge public understanding of LDs, asking questions in ways that are important to them and represent how they see themselves. Here, we describe and evaluate the process of creating an accessible survey platform and an online survey in a research team consisting of academic and non-academic professionals with and without LDs or autism. Through this inclusive research process, the co-designed survey met the expectations of the co-researchers and was well-received by the initial survey respondents. We reflect on the co-researchers' perspectives following the study completion, and consider the difficulties and advantages we encountered deploying such approaches and their potential implications on future survey data analysis.

7.
J Clin Microbiol ; 51(8): 2775-7, 2013 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-23698522
8.
Science ; 329(5993): 727, 2010 Aug 13.
Artigo em Inglês | MEDLINE | ID: mdl-20705817
9.
Clin Infect Dis ; 47(11): 1372-9, 2008 Dec 01.
Artigo em Inglês | MEDLINE | ID: mdl-18937575

RESUMO

BACKGROUND: Pharmaceutical compounding, the manipulation of ingredients to create a customized medication, is a widespread practice. In January 2005, the Centers for Disease Control and Prevention was notified of 4 cases of Pseudomonas fluorescens bacteremia that were traced to contaminated heparinized saline intravenous flush syringes prepared as a compounded medical product. PATIENTS AND METHODS: We reviewed medical records of symptomatic patients with P. fluorescens-positive cultures of blood specimens or sections of explanted catheters, reviewed the production process of syringes, performed syringe cultures, compared isolates by pulsed-field gel electrophoresis (PFGE), and examined catheters by scanning electron microscopy. RESULTS: We identified 80 patients in 6 states with P. fluorescens-positive cultures during December 2004-March 2006. Sixty-four patients (80%) had received a diagnosis of cancer. Seventy-four (99%) of 75 patients for whom information about catheter type was available had long-term indwelling catheters. Thirty-three (41%) of 80 cases were diagnosed 84-421 days after the patient's last potential exposure to a contaminated flush (delayed-onset cases). Compared with patients with early infection onset, more patients with delayed infection onset had venous ports (100% versus 50%; P <.001). By PFGE, clinical isolates from 50 (98%) of 51 patients were related to isolates cultured from unopened syringes. Scanning electron microscopy of explanted catheters revealed biofilms containing organisms morphologically consistent with P. fluorescens. CONCLUSION: This outbreak underscores important challenges in ensuring the safety of compounded pharmaceuticals and demonstrates the potential for substantially delayed infections after exposures to contaminated infusates. Exposures to compounded products should be considered when investigating outbreaks. Patients exposed to contaminated infusates require careful follow-up, because infections can occur long after exposure.


Assuntos
Bacteriemia/epidemiologia , Cateteres de Demora/efeitos adversos , Infecção Hospitalar/epidemiologia , Surtos de Doenças , Infecções por Pseudomonas/epidemiologia , Pseudomonas fluorescens/isolamento & purificação , Cloreto de Sódio/efeitos adversos , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Bacteriemia/microbiologia , Técnicas de Tipagem Bacteriana , Sangue/microbiologia , Cateteres de Demora/microbiologia , Criança , Pré-Escolar , Infecção Hospitalar/microbiologia , Eletroforese em Gel de Campo Pulsado , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Microscopia Eletrônica de Varredura , Pessoa de Meia-Idade , Infecções por Pseudomonas/microbiologia , Pseudomonas fluorescens/classificação , Pseudomonas fluorescens/genética , Cloreto de Sódio/uso terapêutico
10.
Science ; 321(5892): 1019, 2008 Aug 22.
Artigo em Inglês | MEDLINE | ID: mdl-18719253
13.
Science ; 319(5868): 1335, 2008 03 07.
Artigo em Inglês | MEDLINE | ID: mdl-18316542
14.
Science ; 319(5867): 1161, 2008 Feb 29.
Artigo em Inglês | MEDLINE | ID: mdl-18309049
15.
Science ; 319(5863): 548, 2008 Feb 01.
Artigo em Inglês | MEDLINE | ID: mdl-18239092
17.
Science ; 319(5859): 12, 2008 Jan 04.
Artigo em Inglês | MEDLINE | ID: mdl-18174400
19.
20.
Science ; 318(5851): 715, 2007 Nov 02.
Artigo em Inglês | MEDLINE | ID: mdl-17975035
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