How the Project was structured
The Imagining Futures project was conducted by me at Warwick Medical School, and was funded by the Economic and Social Research Council (a major funder of social research in the UK). The research consisted of two phases; in-depth interviews and a survey. To support the research and offer advice and guidance, two advisory groups were set up. One advisory group comprised of 6 SMA Support UK (formerly known as The Jennifer Trust) staff members who are experienced at supporting people with SMA. The second committee, known as the ‘expert review panel’ comprised of people living with SMA and their families. Further information about the expert review panel can be found on the project website. The advisory groups were consulted three times throughout the course of the project, once at the start of the project, once to advise on the development of the survey and finally near the end of the project to offer input on the results. Both advisory groups were involved in the development of this report.
Phase One: Qualitative Interviews 2013 - 14
The first phase of the project comprised 36 interviews. Participants were recruited into the study through an advertisement placed in SMA Support UK’s Inspirations newsletter and through their website. Of those who responded and participated in an interview, 24 people had SMA in their family and 12 people had SMA themselves. The participants represented a range of Types and experiences of SMA. During the interviews, participants were asked to talk in detail about their experiences with SMA and also how these might have impacted on any reproductive decisions they had made (particularly their decisions to use or not use screening and testing technologies both for SMA and other conditions), and their views about screening for SMA being offered to the general population. The interviews revealed a wide range of views on screening for SMA, and also the complex ways in which prior experiences with SMA are brought to bear in reproductive decisions.
To give you examples of the range of perspectives, here are two anonymised excerpts from the interviews (reproduced with permission of the participants). The first excerpt, from a parent whose child has SMA Type 1, shows support for screening and a sense of anger and frustration that screening was not available at the time their child was born,
“I think I’d probably vote for screening if it came to a vote, because it’s that person’s choice. So it’s not fair to take the choice away from them if you’ve got the technology already knocking about to give them that choice…[…]…I actually asked the doctor at [hospital] when [child] was diagnosed, how come they missed it as I had all my scans…and he [the doctor] just said it’s not something they test for…[…] and I was gobsmacked. Couldn’t get my head around it at all. And I love [child] to pieces…[…] but the SMA we could do without thanks! So I would just see it [screening] would take away some of those problems…It only seems fair that they [other parents] have a choice because it’s far from easy!”
In contrast to this view, some families and adults with SMA expressed the view that they thought that a national screening programme would mean that people would make decisions about having a child with SMA without insight into the positive things that people with SMA bring into the world, which would be lost if would-be parents opted to terminate their pregnancies affected by SMA. As one parent of a child with SMA Type 2 commented,
“You see what worries me about screening is that you’re being asked to make a decision about having a child with a particular condition before you’ve actually had any experience of that condition. If someone had told me before I had [child] that he’d have SMA, he’d always be in a wheelchair, that he’d be in and out of hospital every year with chest infections, spinal operations what have you, I’d have run away screaming probably! [laughs] People think they can’t cope with a situation until they’re put in that situation and then they just get on with it. My worry is that screening becomes the easy way out. You don’t bother to find out actually how much you can cope with because you’re allowed to press the emergency eject button…[…]….and I know I would have been one of those parents saying ‘I can’t do it, it’s too hard, I can’t take this on’ I just know I would, but do you know what? We’re fine and I’m a stronger better person because of it”
This contrast between the views of those who support screening, and those who had reservations about what screening might mean ran across all of the interviews, highlighting the fact that screening is a controversial topic area for many adults and families living with SMA and that there isn’t a clear cut unanimous viewpoint amongst affected families as to whether screening for SMA is a good idea or not.
Phase Two: The SMA Screening Survey (UK) 2014 - 15
To get a broader understanding of how widespread the views expressed in the interviews were amongst the larger population of people with experience of SMA, the second stage of the project involved sending out a survey, the ‘SMA Screening Survey (UK)’, to as many people as possible who are living with SMA. To design this survey, many of the key ‘themes’ and ideas that were raised in the interviews were turned into survey questions so that a larger population of families could answer how much they agreed or disagreed with the ideas (you can find a link to the SMA Screening Survey (UK) here. The two advisory groups were also asked for their feedback on the survey, and ethical approval for it was granted by the Biomedical and Scientific Research Ethics Committee at Warwick Medical School in the summer of 2014. Two versions of the survey were created- a paper version, which participants could post back using a pre-paid envelope, and an online version, which was hosted on a secure website at the University of Warwick.
The survey opened on September 1st 2014 and was closed on June 30th 2015. People were invited to complete a survey if they had adiagnosis of SMA in their family or were diagnosed with SMA themselves, were aged over 18 and lived in the UK. In order to reach as many people as possible who live with SMA, the survey was sent out through a variety of channels, as listed below:
1. Inspirations Newsletter
A hard copy of the survey was mailed out along with SMA Support UK’s September 2014 copy of their ‘Inspirations’ magazine which goes out to everyone on SMA Support UK’s mailing list. This mailing list includes almost all of the individuals and families with whom SMA Support UK has (or has had) contact with. In total, 1,000 surveys were posted out to households affected by SMA. A reminder to complete the survey was issued by SMA Support UK in December 2014.
A link to the online version of the survey was posted on SMA Support UK’s website and the Imagining Futures website.
3. SMA Patient Registry
A link to the survey was emailed out through the SMA patient registry in September 2014. The SMA patient registry is made up of 538 individuals with SMA and/or their families. A reminder to complete the survey was issued in December 2014.
4. Social Networking Sites
In order to include people who might not be known to SMA Support UK or listed on the SMA patient Registry, social networking sites were also targeted to include a broader spectrum of families living with SMA. The administrators of two Facebook groups (which exist solely to support people living with SMA) were contacted to ask whether they would be happy to post a link to the survey on their group’s page, to which one group agreed and one declined. The survey was also promoted through the facebook page and twitter feeds of both the Imagining Futures project and those of SMA Support UK.
5. Family Networks
Finally, participants in the survey were encouraged to distribute the survey within their own networks of family and friends affected by SMA to maximise participation.