Knowledge and opinions of professional groups concerning FASD in the UK

Abstract

While information from other countries suggests varying degrees of knowledge about foetal alcohol spectrum disorders (FASD), understanding of the condition among UK health professionals is unclear. This mixed methodology study aims to ascertain the UK picture. It comprised a standardised FASD questionnaire completed by 505 professionals and focus groups using semi-structured interviews. Among those professionals who attended focus groups, five broad themes were identified: lack of knowledge: need for consistent guidance; stigma: need for early intervention; and need for support services. The study highlights a need for training and improved recognition by professionals. Reluctance to diagnose could be due to associated stigma and therefore not merely reflect lack of knowledge. As an avoidable disorder the importance of prevention, as well as early identification of FASD to avert secondary disabilities such as mental health issues, highlights the need for specialist diagnostic and support services.

Keywords

FAS FASD knowledge professionals UK

Introduction

FASD represents a group of disorders caused by prenatal alcohol exposure to a developing foetus (BMA Board of Science, 2007). The management of the condition can be separated into two broad areas: prevention and management (Mukherjee, Hollins and Turk, 2006). This requires health professionals to recognise both the risk in pregnant women and the presentation of the condition in children. When FASD is not recognised, the rates of secondary disability such as mental health problems have been shown to be high (Gray and Mukherjee, 2007). A wide range of health professionals are involved in FASD, from doctors and health visitors who give advice, to social workers working regularly with birth mothers and their children where FASD may be an outcome (Mukherjee, Hollins and Turk, 2006). The day-to-day prevention of such disorders falls primarily to obstetricians, midwives and family physicians, whereas the recognition of those affected is mainly the remit of paediatricians, psychiatrists, social workers, family physicians and health visitors. These are all supported by public health (Gray and Mukherjee, 2007; Mukherjee, Hollins and Turk, 2006).

Methods of inferring levels of knowledge among UK professionals, for example by rates of FASD diagnosis, have been found to underestimate expected prevalence (Morleo, et al., 2011) when compared with the findings of international studies (May, et al., 2009; Petkovic and Barisic, 2010). Thus the accuracy and extent of professional knowledge in the UK remains unclear.

Reports over the last 30 years about health professionals’ knowledge of FASD and how to prevent it have been derived from other countries, especially the USA, Canada and Australia. For example, a postal survey of US obstetricians found that 38% considered an average of one or fewer drinks per day could be consumed safely by pregnant mothers, with 41% considering one to three US standard drinks per day (one standard drink is equivalent to one-and-a-half UK units) acceptable (Abel and Kruger, 1998). In a separate study of 1000 practising US obstetricians, 20% advocated abstinence from alcohol but 13% were unsure what was actually safe. Four per cent of respondents considered that eight or more standard drinks a week did not carry any risk (Diekman, et al., 2000). In a more recent study of US obstetricians 66% of the respondents reported occasional alcohol as unsafe and 45.9% that the effects of alcohol were unclear. Overall, only 78.5% recommend abstinence (Anderson, et al., 2010).

Research from other countries has shown similar findings. Two separate studies from Canada looked at the recommendations regarding safe drinking levels made by midwives and family physicians; 91% recommended abstinence but they considered that not enough information was available to advise others (Tough, et al., 2004). Using a web-based survey, a group of US resident physicians (junior medical doctors) were questioned: 12% of them considered one to three standard drinks per day to be safe; over a quarter felt they had insufficient training but for all but 9% the priority was to protect the foetus from harm (Matthew, et al., 2010). This is not consistent with the legal position in the US and the UK where the rights of the foetus do not take priority over the mother’s rights until it is born (Mukherjee, et al. 2007). Matthew and colleagues’ study contrasts with findings from a group of Canadian child psychiatrists where 74% of 391 replying to a postal survey focused on managing the mothers’ alcohol problems (Tough, Clarke and Hicks, 2003).

Numerous studies have looked at professional groups working with affected individuals. Two early studies from the USA examined the knowledge of paediatricians. A survey of 234 randomly selected paediatricians found that while the majority had heard of FAS (the full syndrome rather than the wider spectrum), they felt unprepared regarding how to manage it and also wished for better education about FASD (Morse, et al., 1992). A later US study of 879 paediatricians from a 3% random sample of those on the US paediatric register found that 62% were confident in being able to identify FAS but only 34% felt then able to manage the disorder (Gahagan, et al., 2006).

Similar findings have been seen elsewhere. A postal study of 1332 paediatricians in Australia indicated that while over 90% reported awareness of already diagnosed cases, only 18.9% felt able to identify the features themselves. Interestingly, 69% of the same group regarded the term FASD as stigmatising (Elliott, et al., 2006), an issue highlighted by other studies. For example, research in South Africa found that alongside poor knowledge and a lack of support services available for FASD, a poor understanding of the children’s presentation leading to stigma was evident (Scheepers, 2009).

The above findings suggest a consistent picture across the different countries featuring limited knowledge regarding diagnosis and management as well as stigma associated with the disorder. What UK health professionals know about FASD is currently unclear due to the scarcity of UK-based research in this area. Various questions arise. For example, how confident are professionals at making the diagnosis? Do people in the UK believe the condition is stigmatising and does this affect the levels of diagnosis? How well are professionals able to support and manage women who are pregnant and drinking or those affected by the disorder? What impact does media presentation have on professionals working with people with FASD?

An FASD pilot knowledge questionnaire we conducted on a convenience sample of psychiatrists attending a local academic meeting revealed that they had all heard about FASD but that the majority knew little about it (Mukherjee, Turk and Hollins, 2006). We therefore decided to explore the knowledge and attitudes of UK professionals in more detail.

Methods

To ascertain what is known about FASD in the UK and the impact it has on individuals with the disorder we employed a mixed-methods approach. Three focus groups in different populations were held and supplemented by questionnaires approved by a NHS research ethics committee. Full written consent was obtained from all focus group participants.

Ethical consideration

Permission for the use of unsolicited questionnaires to the general public or direct mail contact was not granted by the research ethics committee. This was due to the potentially sensitive nature of the questions being asked about FASD.

Sample

Recruitment was mandated to be by self-selection only. Advertisements were placed in local hospital departments identified as working with mothers and affected individuals, and letters sent to local GP practices and national professional networks such as the UK perinatal network and the learning disability health network. Those interested were directed to contact the research team. Participants were then invited to research sessions and focus groups. An education workshop was provided for those attending after the research was completed. Up to 10 people were allowed to attend each research session; from those registering to come along to the education session, if above 10, using random number tables, 10 people were randomly selected to participate (Abidin, 1995). All people contacting the team to take part were invited to attend the education session whether or not they had completed the research, which was not mandatory.

Process

Focus groups

Focus groups were conducted on all occasions using semi-structured interviews conducted by the lead researcher (RM). These were allowed to flow freely based on people’s responses to initial questions. There was no time limit on the sessions held and participants could express their views openly.

The project research assistant (EW) took field notes and each session was recorded on a digital tape recorder, following written permission from the participants. The transcription was compared to written notes to allow for later data completion and verification. Transcribed and verified data from recordings of the focus group discussions were entered into NVIVO version 8. In order to improve the confirmability and thus the validity of the data, the two researchers (RM and EW) independently conducted their own initial thematic coding before comparing results. Later, joint selective coding of the data to extract themes, as described by Bazeley (2009), was completed.

Questionnaire

Data were collected using a questionnaire consisting of 17 questions developed for this project from prior pilots and wider research findings. Examples included: Have you heard of FASD? Is FASD stigmatising? What level of alcohol exposure is associated with full FAS? Who would you refer to if you saw a child suspected of FASD? (Further questions are highlighted in Tables 2 and 3.)

Table 1.

Demographic breakdown of participants completing FASD knowledge questionnaires.

	Gender
	Male				Female
Frequency	62				313
Valid %	16.5				83.5
	Age
	Mean = 44.65				Range = 18–75
	Grouped age
	18–29		30–39		40–49		50–59	60+
Frequency	42		68		123		101	27
Valid %	12		19		34		28	7
	Profession
	GP	Paediatrics	Midwifery	Health visitor	Nurse	Social worker	Mental health	Other
Frequency	62	47	18	13	78	70	20	62
Valid %	17	12	5	3	21	19	5	17
	Number of years in practice
	Mean = 16.42				Range = 0–45
	Years in practice
	0–5 yrs.		6–10 yrs.	11–20 yrs		21–30 yrs	30 + yrs
Frequency	78		61	93		97	34
Valid %	21		17	26		27	9
	Place of work
	Community			Hospital			Both
Frequency	281			50			29
Valid %	78			14			8
	Regularly treat pregnant women?
	Yes				No
Frequency	111				209
Valid %	35				65
	Ethnicity
	White British		White Other		Asian	African Caribbean		Other
Frequency	295		25		30	4		10
Valid %	81		7		8	1		3
	Religion
	Christian		Muslim	Hindu	Judaism		None	Other
Frequency	214		6	14	2		100	12
Valid %	61		2	4	1		29	3

Table 2.

Answers given on structured questionnaire by questions and profession*.

Question			Professional group
		Total	GP	Paediatrician	Midwife	Health visitor	Nurse	Social worker	Mental health	Therapist	Other
Have you heard of FASD?	N	419	61	50	18	13	94	79	31	23	50
	Yes	395	55	50	16	12	90	77	29	21	45
	No	24	6	0	2	1	4	2	2	2	5
Is FASD relevant to your specialty?	N	422	62	50	18	13	93	82	32	23	49
	Yes	381	51	49	17	13	83	76	31	21	40
	No	20	5	1	0	0	4	4	1	0	5
	DK	21	6	0	1	0	6	2	0	2	4
Is the term FASD stigmatising?	N	419	62	50	18	11	9	81	32	23	49
	Yes	245	40	36	10	6	55	48	17	11	22
	No	126	19	13	6	2	22	26	11	10	17
	DK	48	3	1	2	3	16	7	4	2	10
Have you been given enough information to advise mothers?	N	378	59	47	18	11	80	70	31	22	40
	Yes	104	26	21	3	4	19	18	4	3	6
	No/DK	274	33	26	15	7	61	52	27	19	34
Affected people with FASD will get better with support. Do you agree?	N	419	60	50	18	12	93	83	31	23	49
	Yes	95	14	7	5	3	26	13	9	9	9
	No	185	28	38	7	3	28	45	12	7	17
	DK	139	18	5	6	6	39	25	10	7	23
What is current pregnancy drinking guidance?	N	390	59	49	16	12	84	78	29	20	43
	Correct	255	34	29	9	10	56	46	27	13	31
	Incorrect	155	25	20	7	2	28	32	2	7	12
Is the drinking guidance helpful in giving safe pregnancy advice?	N	414	60	50	14	13	88	78	26	23	46
	Yes	241	36	26	5	11	53	45	17	12	32
	No	130	16	20	8	2	28	27	8	10	11
	DK	43	8	4	1	0 13	7	6	1	1	3

N = Number; DK = Don’t know.

Table 3.

Group totals for further questions on the structured professional questionnaire*.

Question	Structured answer	N	%
What level of alcohol consumption is thought to be associated with full FAS? (Correct, regular, heavy) (N = 498)	1.5/day	43	8.6
	1.5/week	5	1
	Occasional heavy binge	31	6.2
	Regular heavy	167	33.5
	Less than one unit per day	6	1.2
	Level unknown	126	25.3
	Don’t know	120	24.1
To whom would you refer if you saw a child suspected with FASD? (N = 454)	Clinical genetics	46	10.1
	Child psychiatry	28	6.2
	Community paediatrician	302	66.5
	Learning disability/psychiatry	25	5.5
	Neurology	26	5.7
	Other	27	5.9

N = number filling in this question.

Questionnaires were completed by those attending focus group and education sessions as well as at professional conferences attended by RM across the UK. An online version of the questionnaire was available for people wishing to complete the questionnaire but unable to attend a session.

Data from questionnaires were entered into SPSS version 18 and frequency data analysed. Comparisons were made between categorical groups and between different demographic backgrounds using chi square tests. Multivariate analysis was not used in this study and no post hoc calculations or corrections were made.

Results

Questionnaire sample

A total of 505 professionals filled in the questionnaire of whom 375 (74%) completed all the questions. Limited comparisons could be made due to sample size and to the level of non-response. Table 1 shows a breakdown of the demographic profiles of all those completing the questionnaires. For example, 83.5 % (n = 313) were female, a wide range of ages and experience was represented, and 78% worked in the community although the majority of those attending (65%) did not work with pregnant mothers.

Themes

Table 2 examines the responses to the basic questions. Since the numbers in each professional group were too small to draw meaningful conclusions, frequency data alone are presented. Other questions where more detailed knowledge about FASD was sought are shown in Table 3. These data were then considered alongside the focus group themes and five significant ones were identified: lack of knowledge; need for consistent guidance; stigma; need for early intervention; and need for support services.

Lack of knowledge

Data from the questionnaires revealed that 94.2% of the overall participants had heard about FASD, but that they varied in the amount they knew; 72.5% reported that they would like to have more knowledge on the subject. This was also seen in the focus groups: ‘I knew very, very little and I still don’t really know that much about it.’

This emerged further when more detailed questions were asked. For instance, 72.5% of respondents mentioned that they had insufficient information to give advice to their patients regarding safe alcohol consumption; only 13.7% were able to identify the proportion of the whole FASD spectrum that presented facial features and thus a possible FAS diagnosis

When compared to younger colleagues, older professionals with more experience were more likely to have come across cases of FASD (n = 384 X²= 36.96 p < 0.0001) and also considered it to be a condition that did not improve with age (n = 412 X²= 16.3 p = 0.04).

Need for consistent guidance

When asked to identify government drinking guidance in pregnancy from a list of options, 65.4% correctly recognised the guidance with 58% of them finding it helpful. The impression of inconsistency in the research findings and its subsequent presentation and interpretation led to a widely held perception that no actual position regarding what level of alcohol in pregnancy was safe was correct: ‘I think the problem with medical media at the moment is particularly with conflicting advice. People tend to go, “Well, no one knows what they are talking about.” ’

Of the professionals who claimed to know the government guidance regarding alcohol consumption in pregnancy, a significant proportion did not find this helpful when advising pregnant women (n = 439 X²= 87.12 p < 0.0001) compared to those who found it helpful.

Stigma

Almost 60% of respondents believed that the condition was stigmatising. This was especially true of paediatricians among whom 72% considered that this was so: ‘The perception that drinking in pregnancy, in many ways, is more of an underground problem. More stigmatised actually than drug use in pregnancy.’

Further, the inconsistency of safe drinking messages and the mixed information about the effects of FASD caused some professionals to be uncertain as to the validity of the information they did receive, leading some to dismiss the message as a whole:

I was talking to a colleague in a young person’s addiction service who said, ‘Oh, you’ve got to be aware of those foetal alcohol syndrome groups.’ I’m trying to think of the exact word, sort of a maverick’s cause. As I say, there is a lot of stuff that’s said out there in a very evangelical way of dubious, dubious repute.

Some 10% of those completing the questionnaire, including one midwife, considered FASD to be irrelevant to their specialty.

Need for early intervention

There appeared to be a clear sense that in order to reduce risk, intervention and education about the harms of alcohol needed to be targeted at an early stage. Health interventions needed to be directed at a younger age and leaving it until adulthood was too late: ‘They should be giving them information about things like that, shouldn’t they? Really about foetal alcohol at an earlier stage. Right from the beginning.’

Need for support services

As shown in Table 3, just over two-thirds (66.5%) regarded community paediatricians as the correct place to refer children with suspected FASD. However, there seemed to be a clear sense that there was no real pathway of support beyond this. The routes to seek help for complicated cases, and the process needed to obtain professional advice and support, seemed to be missing: ‘I mean, as professionals, we struggle to find out where to go for support.’

Discussion

Whether it came to giving advice to pregnant mothers or recognising affected individuals, our findings suggest that knowledge about FASD among a wide range of professionals is at best superficial. Many had heard of such disorders but with limited depth to their knowledge. They recognised the message about safe drinking in pregnancy without necessarily knowing the detail or the wider consequences of alcohol for the foetus. This lack of awareness of what to do or how to advise mothers of affected individuals or families makes it difficult for health and social care professions to provide adequate support and is similar to findings from other parts of the world (Anderson, et al., 2010; Diekman, et al., 2000; Elliott, et al., 2006; Gahagan, et al., 2006; Nanson, et al., 1995; Tough, et al., 2005). Our findings go on to suggest that the lack of clarity and confidence have wider implications. Unfortunately the current scientific knowledge base and its reporting seem to have compounded the problem, leading to confusion rather than clarification of what to do for each group.

The importance of recognition

FASD has been described as the most preventable cause of learning difficulties in the world (BMA Board of Science 2007; Mukherjee, Hollins and Turk, 2006). Estimated prevalence rates in studies from many different countries have consistently been shown to be higher than previously thought (BMA Board of Science, 2007; May, et al., 2009; Petkovic and Barisic, 2010).

The condition has potential relevance to a wide range of professionals since it presents with both physical (Autti-Ramo, et al., 2006; Spohr, Willms and Steinhaussen, 1993; Spohr, Willms and Steinhaussen, 1994) and cognitive features (Mattson, et al., 1997; Mattson, et al., 1998; Mattson, et al., 1999; Mattson and Roebuck, 2002; Riley, et al., 2003). As highlighted in our research, professionals considered it important that balanced information was presented when discussing the risks and outcomes of drinking in pregnancy but also that this should be delivered early enough for it to have an impact. Without balance, the perceived evangelical zeal about avoiding alcohol and labelling children with FASD may have led some people to not always believe the message or to see it as relevant to them. In the UK, as in other countries, this remains a challenge (Armstrong, 1998). Further research is required in order to enable professionals to take an educated approach to the disorder, not only to give safe advice during pregnancy but also to recognise and directly manage FASD.

The above findings would suggest that poor knowledge – and perhaps unwillingness or an inability on the part of some professionals to diagnose – may have influenced the perceived stigma and may be one reason for the under-reporting of FASD in the UK (Morleo, et al., 2011).

Consistent messages about safe levels of alcohol in pregnancy and standard methods of diagnosis will need to be adopted if the reliability of these are to improve (Morleo, et al., 2011). Further, our findings suggest that referral pathways – locally, regionally and nationally – need to be better established in order to offer improved and more consistent responses for those diagnosed (also see BMA Board of Science, 2007).

Secondary disabilities

While a great deal of the literature has focused on the level of alcohol that causes harm (Gray, Mukherjee and Rutter, 2009; Kelly, et al. 2010; Sayal, et al. 2007), the outcomes for people and interventional research remain poor (Chandresenna, Mukherjee and Turk, 2009; Streissguth, 1994; Streissguth, et al., 2004; Streissguth and O'Malley, 2000). It is clear that without support for both carers and affected individuals the likelihood of poor outcomes is increased. These include mental health problems for those concerned, as well as effects on society (Barr, et al., 2006; Gray and Mukherjee, 2007; Mukherjee, Hollins and Turk, 2006; Sayal, et al., 2007; Streissguth, 1994). Also, as the relationship between prenatal alcohol exposure and wider neurodevelopmental outcomes becomes clearer (Burd, et al., 2003; Mukherjee, et al., 2011; O'Malley and Storoz, 2003; Oesterheld and Wilson, 1997), the development of pathways to address these issues becomes more important. Our study would suggest that, among professionals, there was a perceived or actual lack of clear referral pathways. This may be part of the reason why people are not diagnosed. Although our research could not prove this conclusively, it may also exacerbate the risk of secondary mental health problems found in other studies. This area warrants further exploration at a service delivery level to ensure that procedures are in place to minimise the long-term impact of FASD.

Support for carers

Professional responsibility goes beyond just the medical model of care. FASD is a condition that requires a broader psychosocial approach. Studies have shown that modification of parenting styles, reducing the stress on the family and good, consistent longer-term structures around the individual are supportive of better and longer-term outcomes (Gelo and O'Malley, 2003; O'Connor, Kogan and Findley, 2002; Streissguth, 1994; Streissguth, et al., 2004). Our study would suggest that the lack of knowledge and, in some, failure to identify FASD as being relevant to their specialty may well preclude this from happening, thus adding to the burden on the individuals and carers affected.

Limitations and conclusions

This piece of research has clear limitations. As one of the first exploratory studies in this area, certain questions may have been leading so that some of the findings require further clarification. Having used a self-selecting group, it does not necessarily reflect the views of broader health practitioners, only those of a subgroup of people who attended. While the sample was random, based on who agreed to complete the questionnaire or attend the meeting, some groups were over-represented and others lacking. For example, the majority of participants were female. People attending conferences may also demonstrate an interest in a particular subject area so that the generalisation of findings may be limited. The lack of involvement of, for instance, obstetricians is a problem and therefore warrants separate study. The restrictions placed by ethical review meant it was not possible to be more selective. One focus group was run with only four people due to failure to attend. Not all the items on the questionnaires were completed, allowing only limited analysis and understanding to be achieved.

Nevertheless, this study offers some initial insight into the current level of knowledge among professionals in the UK. FASD is a condition that presents to many different professional groups. This article suggests the importance of delivering better education for these groups as well as highlighting the need to provide consistent, structured services to help improve the delivery of care to those affected.

Footnotes

Acknowledgement

Many thanks to Jane Hubert for all her help in commenting on the original draft of this article.

Dr Raja Mukherjee is a Consultant Psychiatrist, Specialist FASD Behavioural Clinic, NHS Surrey and Borders Partnership, UK.

Elizabeth Wray is a Research Assistant to Dr Mukherjee.

Leopold Curfs is Professor of Learning Disabilities at Maastricht University Medical Centre, Department of Clinical Genetics, and Director of the Governor Kremers Centre at the Academic Hospital, Maastricht and Maastricht University, Netherlands.

Baroness Sheila Hollins is Emeritus Professor of Psychiatry of Learning Disability at St George’s University of London, and Chair of the BMA Board of Science, UK.

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