In March 2022, the Queen’s Nursing Institute Scotland conducted an online survey about Fetal Alcohol Spectrum Disorders (FASD). This was a Year 1 activity of Healthier Pregnancies, Better Lives (HPBL) – a QNIS programme supported by Cattanach and The National Lottery Community Fund. All community nurses and midwives anywhere in Scotland were eligible to participate in this survey.
QNIS Senior Fellow (Dr Jonathan Sher), HPBL Project Coordinator (Lisa Lyte) and HPBL Advisor (Prof Moira Plant) designed and promoted this questionnaire. Participation was not limited to community nurses and midwives having expertise in, or clinical experience with, FASD. We wanted to better understand the awareness, attitudes and advice of a cross-section of these crucial, frontline health professionals.
Despite the pressures, fatigue and other burdens they were facing during another spike in COVID-19 cases, a wonderfully diverse group of community nurses and midwives throughout Scotland answered our questions and shared their perspectives, knowledge and experience. We are grateful to them.
Why an FASD survey?
The fundamental goal of Healthier Pregnancies, Better Lives is to help people who will eventually become birth parents actually get what they already desire: a safe pregnancy, a healthy baby and a thriving family. FASD is a lifelong, life-changing neurodevelopmental condition. No one becomes pregnant out of an overwhelming desire to have, and raise, a child with the array of difficulties and challenges that inevitably accompany FASD.
The Scottish Government estimate that approximately 172,000 babies, children, young people and adults are directly affected by Fetal Alcohol Spectrum Disorder right now. Prevention is possible but didn’t happen for them. This number of cases makes FASD one of the most commonly known causes, if not the most commonly known cause, of learning disabilities in our nation. More cases than ADHD, autism or any other permanent neurodevelopmental conditions that also significantly impact thinking, learning, behaviour, wellbeing and life chances.
FASD is not a new, or newly discovered, condition. The consequences of alcohol exposure in utero were first scientifically documented nearly half a century ago in France – and subsequently confirmed innumerable times by solid international evidence. The first Scottish study was completed and published in The BMJ in the early 1980s. Researchers and clinicians around the world first diagnosed Fetal Alcohol Syndrome (FAS), which had distinctive facial/physical features. Later research – although still decades ago – revealed these facial features accounted for only about 10% of the people affected by the alcohol-caused neurodevelopmental conditions known collectively as Fetal Alcohol Spectrum Disorders (FASD). All of those affected experience invisible harm.
Despite its prevalence, seriousness and strong evidence base, less than 1% of these estimated Scottish cases have ever been formally diagnosed, managed or properly supported. Ninety-nine percent of the people the Scottish Government estimates are affected by FASD today have still not received the attention and assistance they need and deserve.
Vastly reducing the incidence of FASD is possible – by consuming no alcohol during pregnancy or by avoiding pregnancy while continuing to drink. The riskiest time for the foetus is in the first 12 weeks after conception. Most women will continue to drink at pre-pregnancy levels until their pregnancy is confirmed. And yet, preconception care and resources for FASD prevention remain even less available than resources for initial diagnosis or after-the-fact assistance and support.
With the publication of Scottish guidance (SIGN 156); the creation of a Scottish eLearning resource on FASD; the development of the Fetal Alcohol Spectrum Disorder Team (FAAST) at Edinburgh University; the advent of parent and peer groups; and, modest Scottish Government-funded training and support initiatives, FASD is finally beginning to be recognised. Scotland remains far behind Australia, Canada and some other OECD nations. However, we are gradually becoming more than just a spectator in the international race to overcome the invisibility that has resulted in extraordinary human, societal and financial costs. For those already harmed over the years, ignorance has not been bliss.
Prevention is HPBL’s primary goal. However, Scotland’s community nurses and midwives also care for, and about, all the babies, children, young people and adults affected by FASD. Our survey was intended to find out what a cross-section of these key Scottish health professionals understand, already do, and want to know about Fetal Alcohol Spectrum Disorders.
The Survey Facts:
- An ‘illustrative’ (neither random nor scientific) voluntary, online survey open to all registered community nurses and midwives working anywhere in Scotland
- Ascertain FASD-related knowledge, attitudes, experiences and opinions of respondents
- Open from 7-21 March 2022, amid the latest COVID-19 wave
- 20 questions (binary, multiple-choice and open); promoted by email, social media & QNIS website
- 219 respondents
- Respondents from every Scottish NHS region (though Lothian and Greater Glasgow & Clyde were underrepresented)
- 90% of respondents were NHS employees
- 20+ specialities; mostly Health Visitors, Midwives, Family Nurses, GPNs & LDNs
- 33% of respondents had 25+ years of experience – the largest proportion
- 8% of respondents had 5 years or less of experience – the smallest proportion
- 20 respondents were randomly chosen and received one £50 voucher each
This is the first of a series of blogs that will share what we learned from these 219 completed surveys. Future blogs will summarise the knowledge and experiences of the remarkable community nurses and midwives who responded, all whilst working through yet another wave of the COVID-19 pandemic. There will be a variety of quotes from these completed surveys to illustrate the depth and diversity of their beliefs and insights.
Watch this space to see the fascinating results of our FASD survey.