Interested in taking part in research into experiences of antenatal screening?greenspun.com : LUSENET : Disabled Parents Network : One Thread
I am a researcher at the University of Oxford working on a project called DIPEx (database of individual patient experience). We interview people on video about their stories of health and illness, and use the interviews to create a website. This is intended both to act as a resource for other people facing a similar situation and wanting to find out how others havefelt/coped, and as an educational resource to give health profesisonals more insight into individuals' personal experiences. I am currently carrying out the research for a site on antenatal screening, and we will also shortly start interviewing for a site on general experiences of pregnancy and making choices around maternity. Ultimately we have plans for a whole area of the site devoted to pregnancy, birth and parenting.
The screening site will cover a broad range of experiences, including people who have declined screening; people who have had normal/low risk screening results; people who have gone on to have diagnostic tests; people who have had a diagnosis of a variety of conditions and what they have decided to do with that information. We do around 40 interviews for each project, and I would very much like to be able to include some views from disabled parents about screening decisions. The sample does not aim to be statistically representative - we use 'maximum variation sampling', which means we cover as many differing perspectives as possible (also including ethnicity, socio-economic group, regional background) - a lot to cram into our 40 interviews, as you can see! This means I could probably only interview one or two disabled parents (with partners if applicable and they're willing). However, I will also be looking later on for volunteers for some of our other projects in the field of pregnancy and birth. If you're interested to look at our website it's at www.dipex.org.
-- Anonymous, January 28, 2004
I asked them not to do screening for the down's syndrome test on my baby- I think it's called some kind of protein test and they said they would do it with the other blood tests unless I asked them not to. Personally I don't want to know beforehand if my kid had this. I would rather have had a kid even if they did have a disorder because it's better to be alive than dead, whatever disability unless you were in such bad pain you wanted to be dead. Actually they don't know yet any screening for autism conditions which is more likely to have been passed on as this is my problem, but my kid seems to be ok, she is 2 now and she is more sociable than I was, and better at talking. I don't think it's up to parents to pick what kid they would have, if you wouldn't like a kid with downs syndrome, you're probably not a tolerant enough person to have a kid anyway.
-- Anonymous, February 02, 2004