2 results
A randomised controlled trial to investigate the effectiveness of sustained photoprotective behaviour in xeroderma pigmentosum after intervention
- Tamara Searle, Jessica Walburn, Sam Norton
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- Journal:
- BJPsych Open / Volume 7 / Issue S1 / June 2021
- Published online by Cambridge University Press:
- 18 June 2021, p. S287
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- Article
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Aims
This study aimed to investigate whether an intervention designed to improve photoprotective behaviours is effective at changing behaviour and whether any change could be maintained.
BackgroundXeroderma Pigmentosum (XP) is a rare condition in which patients are at risk of malignancies when exposed to ultra-violet radiation (UVR). Sufferers must take extra precautions to protect themselves from UVR. They must apply sunscreen to exposed skin, wear thick clothing, gloves, and a UVR-protective visor. Treatments include preventative photoprotective measures; the use of sunscreen and protective clothing. Additionally, frequent eye and skin examinations are required and swift removal of any premalignant lesions.
MethodIn this randomised controlled trial, 16 participants with XP were given questionnaires at 4 time points; baseline, post-intervention, 5 months and 9 months post-intervention. The intervention involved 7 one-on-one counselling sessions, as well as telephone consultations. Counselling sessions encouraged photoprotection adherence, self-efficacy and discussions of any barriers to improving photoprotective behaviour. This study focused on psychosocial variables, attitudes and photoprotection. Questionnaires included the photoprotection self-efficacy questionnaire, Self-Reported Behavioural Automaticity Index, Short Warwick-Edinburgh Mental Wellbeing Scale, Quality of Life and Brief Photoprotection Adherence Questionnaire.
ResultThe intervention was shown to have no significant effect on participants’ questionnaires scores. Univariate ANCOVA revealed a group effect between follow-up 1 (FU1) and follow-up 2 (FU2); η2 = 0.422 for self-efficacy in wearing photoprotective clothing. A group effect was identified from BL to FU1 and FU1 to FU2; η2 = 0.343 and η2 = 0.378 respectively in how often participants reapplied sunscreen to their face when outside for longer periods. Univariate ANCOVA revealed no group or time effect for the other outcome variables; for example, sunscreen self-efficacy.
ConclusionThe intervention had no significant effect on photoprotective behaviour questionnaire scores. Future research could focus on recruiting more participants globally to generate more statistically powered results. Research should focus on producing a maintainable intervention so that any positive change would produce better long-term health outcomes. This study lays the foundations for future XP research, which will be vital to improve understanding and enhance photo protective behaviour.
8 - Case study 3: Monash University, a strategic approach
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- By Anthony Beitz, General Manager of the Monash University eResearch Centre, David Groenewegen, Director of Research Infrastructure at Monash University Library, Cathrine Harboe-Ree, Monash University Librarian. She is the pastPresident of the Council of Australian University Librarians (2009–13), Wilna MacMillan, Director of Client Services – Science Health and Engineering at Monash University Library, Sam Searle, been the eResearch Senior Specialist (Information Management) at Griffith University since October 2012.
- Edited by Graham Pryor, Sarah Jones, Angus Whyte
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- Book:
- Delivering Research Data Management Services
- Published by:
- Facet
- Published online:
- 08 June 2018
- Print publication:
- 31 December 2013, pp 163-190
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Summary
Introduction
Monash University recognizes that if research data is better managed, more discoverable, available for reuse and exposed to relevant communities it will contribute to increased research impact, enhanced research practice (including collaboration) and improved education outcomes.
Monash has taken on the challenge of developing research data management (RDM) using a multifaceted, multilevel and strategic approach. This has included leadership and participation in large Australian Federal Government initiatives at the same time as using ‘little steps’ approaches within the institution. Monash has led national projects to prototype and develop RDM infrastructure, assumed responsibility as the lead agency of the governmentfunded Australian National Data Service (ANDS), formed an institutional structure for RDM governance, established a Strategy and Strategic Plan for 2012–15 and an RDM policy with associated procedures and guidelines, delivered programmes for RDM skills development, established a petabyte data store and developed and deployed a range of disciplinespecific and versatile solutions for the management of research data and associated metadata.
The university continues to identify RDM as critically significant to its research performance and to the fulfilment of compliance requirements and community expectations. All members of the Monash community share responsibility to improve RDM in a coordinated and integrated way; to support this, the university has made ongoing appointments into research data management roles while also seconding librarians and information technology staff into shorterterm positions to build capability and expertise.
This chapter explores the university's work in the period from 2006 to 2013 and examines the issues and challenges to be resolved when planning and implementing effective RDM. It describes in some detail the characteristics of Monash's organizational approach to RDM, explores both the nontechnical and technical components of Monash's RDM infrastructure, looks at what developments are anticipated and outlines Monash's strategy to promote sustainable RDM infrastructure.
Background
Monash University's research environment and history in research data management
Monash University was established in 1958 and comprises ten faculties on six Australian campuses. It also has campuses in Malaysia and South Africa as well as centres in Italy, India and China. The student body numbers around 63,000, from more than 100 countries (7.1% of these are higher degree by research students). The university has approximately 3800 academic staff and received over $AU282 million in externally funded research income in 2011.