Back in 2010, when we had the inspiration to create a website that would provide resea
rch-based evidence on infant sleep for parents and health professionals, we spent a long time inventing and discussing potential names and acronyms. We settled on Infant Sleep Info Source because it transparently identifies what we do, and the acronym (ISIS) was both easily memorable, and was meaningful in its own right as being the name of the Egyptian Mother-Goddess often depicted suckling her son Horus (Isis and Horus were the precursors to many images of Mary and Jesus). How perfect for a website concerned with babies and their parents! We diligently checked for other organisations using the same name/acronym (particularly in the UK); among other things we found several businesses and organisations around Oxfordshire that are named after the River Isis, which forms the upstream portion of the River Thames in Oxford, a Los Angeles post-metal band, and a fanzine dedicated to Bob Dylan. We also found ISIS was the acronym if the Isotope Stock Inventory Tracker at Newcastle University, and at least 69 other organisations — none of which had anything to do with infant sleep. We therefore decided to call our venture ISIS, applied for ESRC funding which was awarded in 2011, and launched the website, Facebook page and Twitter feed in 2012 to a good response.
In 2013 the expansion of the insurgent group Dawlah al-ʻIraq al-Islāmiyah (Islamic State of Iraq) into Syria gave rise to their new name al-Dawlah al-Islāmīyah fī al-ʻIrāq wa-al-Shām (Islamic State of Iraq and the Levant, or Islamic State of Iraq and Syria). The English-speaking media now commonly refer to this group as ISIL, ISIS or IS. Beginning in 2014 after the publicity surrounding the terrorist activities of this group, organisations, businesses and even individuals around the world with the name Isis or acronym ISIS began being criticised for the use of this name. The Infant Sleep Information Source is not alone in receiving comments, particularly via social media, that we ‘should change our name’ because we might be confused with ‘the other ISIS’. There is even a petition in support of women and girls named Isis, to encourage the world’s media to use a different label for the terrorists because of unkind comments.
So, let us be clear — we will not change our name because a terrorist group is currently being labelled with an acronym that we happen to share. We chose our name and our acronym very carefully, and all our ‘products’ (our website, our info sheets, our phone app and our publicity material) are labelled with it. As a non-income-generating organisation who provide our service for free, in our spare time, we do not have any budget and therefore no funds for re-branding. To rebuild our website and phone app would cost several thousand pounds, and to change our domain name would require a huge amount of work to track down and contact all the users (web and print-based) who currently link to our site and request they update these links. This is not a task we have the resources to undertake.
We have faith that the users of the Infant Sleep Info Source website, and our facebook, and twitter and followers can tell the difference between a group of infant sleep researchers and a terrorist organisation. If our acronym puts someone off from clicking on our site, that’s their choice. To tell someone they ‘should change their name’ because of a negative association they have no control over is insensitive and rude. Instead, let’s support the organisations and individuals in the world who, like us, have had their name hijacked against their will.
Since launching ISIS at the beginning of April the site has received over 20,000 visits from 95 different countries (with 50% of visits from UK). We have received many expressions of thanks and positive comments for creating the site. Thank you for these. Our Facebook page has almost 1000 members who receive regular ISIS updates, news stories and research announcements regarding infant sleep, share the odd bit of humour, and participate in some interesting discussions. If you use Facebook, please join us at http://www.facebook.com/ISISonline or follow us on Twitter @Isisonline1.
In April we added new sections to the site summarising the research evidence on sleep training: a parents’ summary (http://www.isisonline.org.uk/how_babies_sleep/sleep_training/) and a more detailed version for health professionals (http://www.isisonline.org.uk/hcp/how_babies_sleep/sleep_training/).
In May we completed and uploaded a bibliography all of the research references cited on ISIS so far. This involved around 200 references, so is a useful resource if you ever need to track down a study on some aspect of infant sleep: (http://www.isisonline.org.uk/hcp/research_evidence/cited_references/).
Today we are pleased to announce the first update of June in response to popular demand! We have had many requests for printable pdfs of information on the site to facilitate sharing. The first 3 of these are now available:
- Normal infant sleep
- Where babies sleep
- Bedsharing and infant safety
We have also received enquiries about producing tear-off pads of these leaflets, or packs of printed leaflets for distribution in hospital discharge packs or parenting classes for purchase. To figure out whether we could do this economically please let us know if such an option would be something you would be interested in having available, and in what sorts of quantities by leaving a comment or emailin us at the address below.
Finally we look forward to seeing some of you at the Sleep, Mothering and Infancy Conference in Durham on June 14th. A few places are still available, however late registrations (after June 6th) will incur a £20 late reg fee, so don’t hang about! More details at www.dur.ac.uk/sleep.lab/sim
Helen, Charlotte and the ISIS team.
In this inaugural blog for the ISIS project I thought, perhaps, we should explain ourselves. What’s the point? Why have we inflicted yet ANOTHER website upon the unsuspecting public, not to mention the hair-pulling, wailing and crash-course in web-site wrangling we have inflicted upon ourselves?
One afternoon, nearly two years ago, I did something rather dangerous, (while replying to 5946th email I had received requesting information on some aspect of infant sleep research) and had a GOOD IDEA that ‘someone’ needed to create a centralised source of information regarding infant sleep — something evidence-based, that drew together all the different strands of research on infant sleep into a single location and made it accessible to people who could actually use it in their work and in their lives. Fortunately at the time I was busy writing up a whole pile of results from previous research projects, so I wasn’t tempted to take on the task myself.
Eventually, however, a couple of months later an email snuck into my inbox about Research Council funding for translating academic research into outputs accessible for research users, and particularly emphasising an interest in projects that addressed Health and Wellbeing. A large incandescent light-bulb appeared over my head, and I promptly fired off a few emails to see if anyone would talk me out of the good idea that was rapidly turning itself into a funding application. Nobody did, and infact everyone I contacted was encouraging… A couple more rounds of email later and spokespeople from several organisations were willing to write letters of support, and to partner us in such a venture. Responses were enthusiastic: a web-based resource for infant sleep information would be very helpful for parents seeking information on infant sleep, for health care staff to keep abreast of the latest evidence, to share with parents and to inform local policy, and for parenting organisations to share with their members.
So we drafted our proposal for a UK-based Infant Sleep Information web-site, dreamt up a name with an easily remembered acronym, and submitted our application. Six months later we received copies of the reviewers’ and assessors comments, and were asked to respond. A month after that we received notice of a funding award, and once the 2010-11 academic teaching year was over we commenced work on creating ISIS.
The preparation phase of ISIS has taken us 6-7 months. Starting from scratch we have (with the help of several people more experienced than us) designed and built a website, amassed large piles of research papers that we have sorted, sifted and distilled, trawled the inter-webs to find out what current sources of information exist, and written pages and pages of content: summaries for parents, and more detailed discussions full of references for health professionals. We have collected feedback on the concept, site design and proposed content from hundreds of attendees at the UNICEF Babyfriendly conference, and held multiple steering committee meetings with our partner representatives who have commented extensively on everything we have sent them.
Friends of the ISIS facebook site undertook beta-testnig of the site in February, and alerted us to non-working links, odd organisation of information, appearance issues in different browsers and the like. We have spent the last few weeks ironing out wrinkles, fumigating for bugs, and attempting to type with crossed-fingers while hoping we’d get everything ready in time for our self-appointed launch-date of March 31st (carefully avoiding April 1st, lest anyone should think we are having a laugh!).
And here you have it — the initial phase of ISIS — infant sleep information covering sleep development, sleep management and sleep safety and wellbeing.in total 50 pages of information — and we’ve barely made a dent in the long list of elements we would like the website to provide. Very soon we hope to have pdf versions of the parent summaries available for download. We are conducting a systematic review on sleep training, the results of which will be posted here. We are talking with Durham University about the creation of an ISIS phone app. We still have large piles of research to summarise and upload, cited references to compile, ‘coming soon’ spaces still to fill, and someone has to think up a blog-post every month!
Many thanks are due to Charlotte and Dawn, who have done the majority of the work you see here — to Rosie, Sue, Jim, Janette, Jill, Marion and Ann our steering committee reps, to Alex our IT guru, and Amy our creative expert (both of who have cheerfully tolerated our unclear directions, mind-changing, and zillion email queries), and to our enthusiastic cheerleaders around the world who know who they are 🙂
Please tell us your impressions, what you’d like to see us add, or change (comments below are enabled) — and most of all, please tell your friends, colleagues, strangers on the bus to come and explore www.isisonline.org.uk.
Thank you!
Helen and the ISIS team.
Welcome to the blog feature of the ISIS website: Sleep baby, sleep…
Here we will be posting comments and opinions on news and events in the infant sleep research world. Please subscribe to our social media links for automatic updates via facebook and twitter, or check back here regularly to see what we are talking about. See ‘About us’ for more information on this blog.
Blog posts will commence once the ISIS website is officially live sometime in March 2012.
Sleep baby, sleep... 
