A guideline for the prevention and management of Fetal Alcohol Spectrum Disorder in South Africa

Abstract

Background
Fetal Alcohol Spectrum Disorder (FASD) is a public health problem globally, with South Africa having the highest recorded prevalence of all countries. Government programmes to prevent and manage FASD remain limited because of the lack of a specific policy. Herein, we developed a guideline to inform policy on the prevention and management of FASD in South Africa.

Methods
We applied a modified version of the World Health Organization’s approach to guideline development in three phases. In the first phase, we designed the initial guideline prototype. To do this, we conducted an in-depth interview with policymakers and a focus group with relevant service providers on policy requirements for FASD, a document review of policies on FASD and a scoping review of various interventions for FASD. In phase 2, we refined the initially formulated guideline prototype through a discursive approach with seven local and international experts on FASD. Phase 3 involved refining the prototype using a modified Delphi approach. Forty-three and forty-one experts participated in rounds 1 and 2 of the Delphi approach, respectively. The acceptable consensus for each included policy statement was 85%.

Results
We identified three aspects of the proposed guideline, which are the approaches and guiding principles, the prevention measures and the management measures. The guideline proposes that a FASD policy should consider lifespan needs, be culturally diverse, collaborative, evidence-based, multi-sectoral and address social determinants of health contributing to FASD. The essential components of FASD prevention policy consist of awareness and education of the dangers of drinking alcohol, access to treatment for alcohol problems and training of service providers. The management components include capacity building related to diagnosis, educating parents regarding the needs and management, appropriate referral pathways, training of teachers regarding classroom management and support for parents and individuals with FASD.

Conclusion
FASD in South Africa deserves urgent attention. Developing a specific policy to guide programmes could enhance and coordinate the efforts towards preventing and managing FASD. The guideline has the potential to assist policymakers in the development of a comprehensive and multi-sectoral policy for prevention and management of FASD, considering the consensus obtained from the experts.

Full text

R E S E A R C H A R T I C L E Open Access
A guideline for the prevention and
management of Fetal Alcohol Spectrum
Disorder in South Africa
Babatope O. Adebiyi
1*
, Ferdinand C. Mukumbang
1
and Anna-Marie Beytell
2
Abstract
Background: Fetal Alcohol Spectrum Disorder (FASD) is a public health problem globally, with South Africa having
the highest recorded prevalence of all countries. Government programmes to prevent and manage FASD remain
limited because of the lack of a specific policy. Herein, we developed a guideline to inform policy on the
prevention and management of FASD in South Africa.
Methods: We applied a modified version of the World Health Organization’s approach to guideline development in
three phases. In the first phase, we designed the initial guideline prototype. To do this, we conducted an in-depth
interview with policymakers and a focus group with relevant service providers on policy requirements for FASD, a
document review of policies on FASD and a scoping review of various interventions for FASD. In phase 2, we
refined the initially formulated guideline prototype through a discursive approach with seven local and
international experts on FASD. Phase 3 involved refining the prototype using a modified Delphi approach. Forty-
three and forty-one experts participated in rounds 1 and 2 of the Delphi approach, respectively. The acceptable
consensus for each included policy statement was 85%.
Results: We identified three aspects of the proposed guideline, which are the approaches and guiding principles,
the prevention measures and the management measures. The guideline proposes that a FASD policy should
consider lifespan needs, be culturally diverse, collaborative, evidence-based, multi-sectoral and address social
determinants of health contributing to FASD. The essential components of FASD prevention policy consist of
awareness and education of the dangers of drinking alcohol, access to treatment for alcohol problems and training
of service providers. The management components include capacity building related to diagnosis, educating
parents regarding the needs and management, appropriate referral pathways, training of teachers regarding
classroom management and support for parents and individuals with FASD.
Conclusion: FASD in South Africa deserves urgent attention. Developing a specific policy to guide programmes
could enhance and coordinate the efforts towards preventing and managing FASD. The guideline has the potential
to assist policymakers in the development of a comprehensive and multi-sectoral policy for prevention and
management of FASD, considering the consensus obtained from the experts.
Keywords: Fetal alcohol spectrum disorder, Policy, Guideline, Delphi approach, Management, Prevention, Snowball
sampling, Developmental disabilities, Women
© The Author(s). 2019 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0
International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and
reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to
the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver
(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
* Correspondence: atommega@yahoo.com
1
School of Public Health, University of the Western Cape, Cape Town 8001,
South Africa
Full list of author information is available at the end of the article
Adebiyi et al. BMC Health Services Research (2019) 19:809
https://doi.org/10.1186/s12913-019-4677-x
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Contributions to the literature
How to adapt WHO’s approach for guideline
development to develop a guideline for policy.
How to develop/improve a guideline/policy using a
multi-method study with a modified Delphi
approach.
Policymakers’, service providers’and experts’
perspectives regarding policy requirements for the
prevention and management of FASD.
The essential components of FASD policy, which
include awareness and education of the dangers of
drinking alcohol, access to treatment for alcohol
problems, training of service providers, capacity
building related to diagnosis and support for parents
and individuals with FASD.
Background
Globally, one in every 13 alcohol-exposed pregnancies
results in a Fetal alcohol spectrum disorder (FASD) [1].
In 2017, the global prevalence of FASD was 8 per 1000
children and youth [1]. In 2016, the Foundation for Al-
cohol Related Research (FARR), estimated that 6 million
individuals were affected by FASD in South Africa [2]
ranging from 29 to 290 per 1000 live births, the highest
recorded prevalence in any part of the world [3]. The
prevalence of FASD varies from one province to another,
with the Western Cape and Northern Cape provinces
the most affected. In 2017, the prevalence of FASD
among Grade 1 pupils in the Western Cape was esti-
mated to be 196 to 276 per 1000 [4], while in the North-
ern Cape the prevalence was estimated at 63.9 per 1000
Grade 1 pupils in 2015 [5].
Although FASD can be clinically identified through
characteristic facial features that can be observed on
examination [6,7], some FASD are considered as hidden
disabilities because in most cases there are no noticeable
physical manifestations [8–11] thus increasing the
chances of missed diagnosis or misdiagnosis [12–15].
Misdiagnosis and missed diagnoses prevent individuals
from accessing early and appropriate services [16]. To
diagnose any of the FASD (fetal alcohol syndrome
{FAS}, partial FAS, {PFAS}, alcohol-related neurodeve-
lopmental disorder {ARND} and alcohol-related birth
defects {ARBD}), individuals must meet all or some of
the range of identified criteria [17–19]. These criteria in-
clude documented or undocumented prenatal alcohol
exposure, prenatal and or postnatal growth deficiency,
deficient brain growth and neurobehavioral impairment
–with or without cognitive impairment [17–19]. The re-
quirements for prevention, diagnosis and management
suggests a multi-sectoral approach [3,9,20–23].
While the South African government endeavours to
address the high prevalence of FASD, its responses
through policy have not been adequate [24,25]. Despite
the availability of context-relevant evidence-based inter-
ventions such as case management and universal preven-
tion approaches to prevent FASD [26,27], there is a lack
of policy and resources to guide the expansion and im-
plementation of these interventions to many parts of the
country. There is evidence that current prevention and
management interventions are informed by genetic-
related and other generic policy documents [21,28]. For
instance, the Human Genetics Policy Guidelines for the
Management and Prevention of Genetic Disorders, Birth
Defects and Disabilities and the Mini Drug Master Plan
covers FASD as a genetic disease. The National Depart-
ment of Health also recognises FASD as one of the ten
focal genetic conditions. The Western Cape government
has listed FASD as a provincial health priority in its ser-
vices regarding birth defects [29]. Because these docu-
ments reflect FASD in a generic manner, they do not
support the holistic and comprehensive (multi-sectoral)
approach required to address FASD [24,25,30].
In addition to the efforts of the South African national
and provincial governments, non-profit organisations
(NPO) provide various levels of contributions to address
FASD in South Africa. The South African government
provides partial funding to some of these organisations.
These organisations function mainly in the Western
Cape, though they have a presence in other provinces,
especially Northern Cape and Eastern Cape. FARR, for
example, provides services such as mentorship, creating
social awareness, providing education and training pro-
grammes, conducting medical and psycho-social FASD-
related research and providing support and diagnostic
services [31]. FASfacts, as an NPO, offers FASD preven-
tion programmes through experiential learning, advertis-
ing campaigns using churches, films and theatres to pass
FASD messages and mentoring of pregnant women [32].
These organisations obtain funding from the govern-
ment by aligning their programmes to the existing gen-
eric policies.
Different approaches have been proposed to develop rele-
vant and effective FASD policies. One such approach pro-
posed to prevent and manage FASD, is the decolonisation
policy discourse [33]. The proponents of the decolonised
policy discourse advocate that women should be seen as
victims of the FASD problem, not as perpetrators [33].
They also propose that the socio-economic and socio-
political circumstances that predispose women to alcohol
consumption during pregnancy, which may lead to FASD,
should be addressed [33]. Other proposed approaches are
the comprehensive (addressing all factors); inclusive (in-
volving all sectors and all levels of the government); and the
human rights-based approach (acknowledging the princi-
ples of non-discrimination, participation, inclusion, equity
and access) [34]. A women-centred approach, which
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considers the needs of women in all aspects of design and
delivery, including the location and accessibility of services,
staffing, programme development, content and materials
has also been proposed [34]. We propose that for an FASD
policy to be truly comprehensive and multi-sectoral, all the
above approaches should be scrutinised.
Having a multi-sectoral and comprehensive policy [21,35]
as demonstrated by the Canadian and Australian govern-
ments [34,36,37], has the potential to coordinate existing
and new approaches and programmes for preventing and
managing FASD. In South Africa, government programmes
to address FASD remain limited partly because of the ab-
sence of a policy to inform prevention and management
[29]. To this end, we sought to develop a guideline to inform
the design of a comprehensive and multi-sectoral policy to
address FASD in South Africa [30].
Methods
In developing the guideline for the prevention and man-
agement of FASD, we adapted the World Health Organi-
zation’s approach (steps) [38,39], which we organised in
three phases (Fig. 1). The first phase entailed designing
the initial guideline prototype. In Phase 2, we refined the
initially formulated guideline prototype. Phase 3 involved
testing and confirming the refined prototype using a
modified Delphi approach.
Phase 1: designing the guideline prototype
We conducted focus group discussions with service pro-
viders and in-depth interviews with policymakers to
identify policy requirements for FASD in South Africa
[25,30]. The service providers included educators,
health and allied health professionals as well as social
service professionals providing services to women, espe-
cially pregnant women or individuals with FASD or re-
lated conditions. The policymakers included individuals
working in the Departments of Social Development,
Health and Education on FASD-relevant issues or re-
lated conditions. The service providers and the policy-
makers were asked various questions regarding current
practices and interventions and policy requirements for
FASD.
In addition to the focus group discussions and in-depth
interviews, we conducted a document review. We identi-
fied clauses of FASD policy in various South African-
related policy documents [28]. We searched databases
(PubMed and Google search engines) and the websites of
South African national and provincial departments. We
used the following search terms: foetal alcohol spectrum
disorder, alcohol-related neurodevelopmental disorder,
foetal alcohol syndrome, white paper, green paper, policy,
action plan, gazette and South Africa. Although, we used
“foetal”for the search, it includes documents with “fetal”.
We also contacted the designated persons in the depart-
ments of Education, Health, Social Development and
Trade and Industry via emails to request other relevant
documents.
Furthermore, we conducted a scoping review to iden-
tify the prevention and management interventions of
FASD globally that could be included in the policy [38].
Fig. 1 Study design approach
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We searched the following Ebsco Host embedded data-
bases: Academic Search Complete, ERIC, SoINDEX,
Health Source. We also searched the Nursing/Academic
Edition, CINAHL, Medline and Psych-ARTICLES,
Springer Links, SAGE Journals and PubMed databases.
The search terms used include fetal alcohol spectrum
disorder, fetal alcohol syndrome, alcohol-related neuro-
developmental disorder, alcohol-related birth defects,
partial fetal alcohol syndrome, prenatal alcohol exposure,
intervention, strategy, treatment, programme, manage-
ment, prevention and therapy.
Data obtained from the various sources were analysed
using content and thematic framework analyses in the
different studies. The findings from these studies were
integrated towards developing the initial guideline proto-
type using the framework indicated in Fig. 2.
The information gleaned from the various sections as
represented in the framework were then rephrased into
different statements to formulate a draft guideline.
Phase 2: refining the initial guideline prototype
The draft guideline developed in Phase 1 was used to
engage with seven international and local experts
(Table 1)for their opinions, comments and suggestions
for improvement regarding each item and the overall
guideline prototype. These experts were purposely sam-
pled based on their availability and expertise. Emails
were sent to them requesting their participation. We se-
lected those who had experience in conducting FASD
research and those who had been involved in developing
FASD policies.
Following the engagement with the experts, we ob-
tained a refined guideline prototype (Table 2).
Phase 3: testing and finalising the guideline
We conducted a modified Delphi approach to improve
the prototype guideline developed for policy on FASD.
Development of questionnaire
The statements in the refined prototype developed in Phase
2(Table 2)were used to design Likert scale statements for
the Delphi responses. We asked the respondents to rate
their agreement with each statement on a 5-point Likert
scale (from ‘strongly disagree’to ‘strongly agree’)whereby
they could answer ‘neutral’when they were not sure how to
rate a statement. The questionnaire was divided into three
sections (principles and approaches to policy development,
prevention considerations and management consideration)
and three sub-sections (education, health and social as-
pects). The participants were encouraged to provide further
comments at the end of each section and sub-section. The
questionnaire was piloted among international and local ex-
perts working on the prevention and management of FASD
to ensure coherence, feasibility and validity.
Recruitment of the participants
Using purposive and snowball sampling techniques, we
recruited professionals who have experience and or ex-
pertise on FASD. First, we purposively recruited 15 partic-
ipants (policymakers, teachers, social service professionals,
researchers and allied health professionals) as the seed
participants. We used the following criteria for selecting
the first batch of participants (i) having experience work-
ing with women (especially pregnant women) and or indi-
viduals with FASD or related conditions, (ii) experience in
making or implementing FASD policy or related condi-
tions, and (iii) having published articles or conducted
FASD research or related conditions. Second, we asked
the 15 participants to invite others in their networks
(snowballing). Through purposive and snowball ap-
proaches, 43 participants completed round 1 of the Delphi
study. We invited the 43 respondents who participated in
round 1, and 41 completed the round 2 questionnaire. In
Table 3, the characteristics of the participants in both
rounds of the Delphi study are shown.
Data collection
We created a Google form, which allowed the partici-
pants to respond online and invited them via email to
follow the link to this form. Participants were given an
initial period of 2 weeks to respond to the questionnaire.
The 2 weeks were extended to 2 months to increase par-
ticipation including the participants recruited by snow-
balling. We reminded those who had not responded
Fig. 2 Heuristic classification framework applied to summarise
the data
Table 1 Characteristics of international and local experts
Type of expert Sex Position
International Female Professor
International Female Researcher
International Female Policymaker
International Male Researcher
Local Male Professor
Local Female Researcher
Local female Lecturer
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Table 2 The prototype guideline for the prevention and
management of the FASD policy
Approaches and guiding principles and approaches –the proposed FASD
policy should be…
Holistic
User- and caregiver-focused
Inter-departmental/multi-sectoral
Considerate of needs across the lifespan
Collaborative
Human rights-based
Based on a public health framework
Culturally diverse and culturally sensitive
Evidence-based
Woman/family-centred
Clear about referral pathways
Designed to avoid victim blaming
Cost-effective
Driven by behavioural economics
Education-related proposed prevention measure for FASD –the proposed
FASD policy should…
Enhance awareness of the dangers of drinking alcoholic beverages
during pregnancy in schools including colleges and universities
Assist individuals with alcohol-use problems in educational settings to
access treatment
Address barriers to access treatment for alcohol-related problems in
educational settings
Address stigma associated with alcohol abuse in educational settings
Facilitate training of teachers re the FASD prevention/
awareness programme
Facilitate the development and implementation of FASD awareness
programmes in schools (including colleges and universities)
Facilitate the use of peer education for the FASD awareness
programme in schools
Promote a healthy lifestyle in schools through sport and other
extra-curricular activities
Make school events alcohol-free
Discourage the establishment of liquor stores in the proximity
of schools
Promote the education of young individuals about healthy pregnancy
in schools
Health-related proposed prevention measures for FASD –should…
Facilitate screening for alcohol use in clinics and hospitals
Encourage proper documentation of the alcohol history of women,
especially pregnant women
Facilitate the inclusion of FASD prevention as a part of health
promotion activities in clinics and hospitals
Facilitate the education of individuals and couples re the dangers of
drinking alcoholic beverages during pregnancy in the
pre-conception clinic
Facilitate the education of individuals and couples re the dangers of
drinking alcoholic beverages during pregnancy in the
reproductive clinic
Encourage the use of visible posters and pamphlets for FASD
Table 2 The prototype guideline for the prevention and
management of the FASD policy (Continued)
prevention campaigns in all clinics and hospitals
Facilitate training of healthcare professionals re FASD prevention
Facilitate early and appropriate referral to treatment for individuals
(including women) with alcohol misuse issues
Empower health professionals with the skills to counsel and ask
questions about safe and appropriate alcohol use
Promote the use of contraceptives to avoid unplanned pregnancy
Community/social-related proposed prevention measures for
FASD –should…
Facilitate public awareness re the dangers of alcohol abuse
Facilitate the education of all people in the community re the dangers
of drinking alcohol during pregnancy
Facilitate the education of individuals and couples re the dangers of
drinking alcohol during pregnancy
Encourage the use of community groups for FASD prevention
(education and awareness)
Facilitate the training of the community health/community-based
workers and youth care/social workers re FASD prevention
Facilitate early intervention and assistance for individuals with alcohol-
use problems in the community
Facilitate the creation of social programmes such as skills training and
empowerment programmes for women in the community
Encourage awareness and education re FASD in the workplace, rural
and urban areas and farming communities
Promote the use of multimedia such as posters, adverts, pamphlets, TV,
social media and road shows re FASD awareness in the communities
Promote enforcement of liquor laws and regulation of shebeens to
control accessibility and availability of alcohol in the community
Provide access to treatment for people with alcohol-use problems in
the community
Provide smooth aftercare and community reintegration to people who
have attended alcohol rehab
Promote afterschool activities in the community to prevent early
exposure of adolescents to alcohol
Discourage all advertisements that link alcohol to sport/other popular
community events/activities
Mandate labels on alcohol containers to contain information re the
dangers of drinking alcoholic beverages during pregnancy
Mandate that liquor stores display warning signs regarding alcohol and
pregnancy
Enable the creation of support groups for individuals with alcohol
misuse issues in the community
Facilitate the training of the community and religious leaders re
FASD prevention
Promote collaboration and the use of non-profit organisations (NPO) re
FASD prevention
Utilise community and religious leaders to increase FASD awareness
among their communities
Promote the expansion and adoption of NPO evidence-based interven-
tions re prevention in the community
Assist families to support individuals with alcohol-use problems
Education-related proposed management measures for FASD –should...
Facilitate the development of a curriculum that accommodates
individuals with FASD
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before the end of the 2 weeks as well as weekly up to the
2 months. The round 1 questionnaire allowed partici-
pants not only to agree or disagree with a set of state-
ments but also to provide comments to improve the
guideline. Before we administered the questionnaire, we
agreed that if a statement reached at least 85% consen-
sus from the participants, it would be endorsed. State-
ments not reaching the 85% consensus, and the new
ones generated from the analysis of the comments of the
participants in round 1, were prepared as a separate
questionnaire and administered in round 2.
Validity
To ensure validity in this study, we consulted with local
and international experts to ensure the content covered
all the areas of the variable being measured. The experts’
opinions were used to improve the guideline before it
was used for the Delphi study. We also consulted ques-
tionnaires and surveys designed to measure similar
concepts.
Reliability
To ensure reliability, we asked some of the participants
to answer the questionnaire for a second time. Both
their responses were compared to show consistency.
Additionally, we calculated Cronbach’s alpha for the
study using the Statistical Package for Social Science
(SPSS) software. The Cronbach’s alpha for round 1 is
0.977, and round 2 is 0.796.
Table 3 Characteristics of the participants
Characteristics Round 1(n= 43) Round 2 (n= 41)
Gender
Male 11 11
Female 32 30
Occupation
Social services provider 14 13
Researcher 9 9
Policymaker 12 11
Allied health and health 5 5
Teacher 3 3
Highest level of education
High school 1 1
College 3 3
University 39 37
Years of experience
1–51413
6–10 12 11
11–15 7 7
16 and above 10 10
Table 2 The prototype guideline for the prevention and
management of the FASD policy (Continued)
Facilitate training of teachers re the classroom management for
individuals with FASD
Promote skilled schools for learners with learning disabilities (including
individuals with FASD) who are not benefiting from formal education
Make provision for special assistance for individuals with FASD within
mainstream schools
Facilitate the creation of the special schools for learners with a learning
disability (including individuals with FASD) who are not benefiting from
mainstream schooling
Facilitate the education of parents re the needs and management of
individuals with FASD
Health-related proposed management measures for FASD –should...
Facilitate capacity building re diagnosis among health professionals
Facilitate FASD screening for all children who are known to have been
prenatally exposed to alcohol
Make provision for diagnostic services for individuals
Promote diagnosis for school children, adolescents and adults to
reduce rates of people who are left undiagnosed or misdiagnosed
Promote appropriate referral pathways to services after diagnosis
Facilitate the creation of diagnostic centres in clinics, hospitals
and communities
Facilitate the creation of national surveillance for FASD via reports from
health professionals
Make provision for integrated and individualised medical services for
individuals with FASD
Encourage routine consideration of FASD in the diagnosis and
management of mental illness and developmental disorders
Community/social-related proposed management measures for
FASD –should...
Provide skills training and empowerment programmes for those in
need among individuals with FASD
Facilitate appropriate employment opportunities for individuals
with FASD
Facilitate the training of community health workers/community-based
workers/youth care workers/social workers and professionals within
judiciary system re FASD management
Facilitate the training of the biological and foster parents/caregivers
regarding the management of FASD
Promote the empowerment of the parents/caregivers of individuals
with FASD in the community
Promote the establishment of support systems for biological and foster
parents/caregivers and individuals with FASD in the community
Promote the referral of parents and individuals with FASD to
appropriate services
Make provision for effective counselling services for parents and
individuals with FASD
Encourage family/community support for individuals with FASD
Provide support for individuals with FASD in child protection/foster
care and the criminal justice system
Facilitate the creation of a structure and supportive environment at
home, school and beyond
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Data analysis
We analysed the quantitative data using SPSS, generating
descriptive statistics (frequencies) for each statement.
Ethical considerations
The research ethics committee of the University of the
Western Cape approved this study (BM/16/4/4). Approvals
were also obtained from the Western Cape Department of
Education (20161212–6937), Departments of Health (WC_
2016RP29_862) and Social Development (12/1/2/4). Eligible
experts were invited to participate via email with the inclu-
sion of an information sheet and a consent form. The
experts were required to read the information sheet to
understand the purpose of the study and what they needed
to do if they agreed to participate. Those who agreed to
participatewereaskedtosigntheconsentform.Wemain-
tained confidentiality during the research by anonymising
the participants.
Results
Guiding principle and approach
Three of the statements achieved 100% consensus in
round 1 and none in round 2 (Additional file 1a).
Women/family-centeredness attained 84% consensus in
round 1 and based on the comments made by some of
the participants, we decided to separate family from
women in round 2. The participants said having
women-centred as one of the approaches and guiding
principle could promote stigma and blame games. In
round 2, family-centredness reached 95% consensus
while women-centredness only achieved 68% agreement.
However, the policy should be designed to avoid gender-
focused interventions recorded the lowest consensus of
66%. There was no particular reason given by the partic-
ipants for the latter.
Proposed prevention measure
Education-related proposed prevention measure
In round 1, only one of the statements attained 100%
agreement from the respondents with none in round 2.
However, most statements achieved 90% and greater in
terms of agreement. The statement, ‘Make school events
alcohol-free’attained the lowest agreement at 81%.
When administered in round 2, it only obtained an
agreement rate of 78% (Additional file 1b).
Health-related proposed prevention measures
Five of the statements on health-related proposed
prevention measures reached 100% consensus among
participants in round 1 (Additional file 1c). The only
statement generated from the comments made by
participants in round 1 and administered in round 2
attained 93% agreement.
Community/social-related proposed prevention measures
Eight statements had 100% consensus in round 1 while
one attained 100% agreement in round 2. The remaining
statements achieved agreement in 90% and above except
two (statements 14 and 23). ‘Discourage all advertise-
ments that link alcohol to sport/other popular commu-
nity events/activities’was re-administered in round 2
and recorded a lower consensus (71%) than round 1.
Some of the participants commented that a ban on the
advertisement has little or no impact on reducing or
preventing alcohol consumption during pregnancy in an
area where drinking is rampant (Additional file 1d).
Proposed management measures
Education-related proposed management measures
Of the six education-related proposed measures, only one
attained 100% of agreement in round 1. The remaining
statements also achieved a consensus rate of 90% and
above (Additional file 1e). Therefore, none of the state-
ments was administered in round 2.
Health-related proposed management measures
None of the health-related proposed management measures
achieved 100% agreement in both rounds (Additional file 1f).
Five of the statements reached consensus at 90% and above.
The remaining statements attained 85% or more consensus,
except one. Although all the statements in this sub-section
reached the acceptable consensus for this study, some of the
participants raised concerns. They commented on the feasi-
bility and practicality of diagnosing school children, adoles-
cents and adults, individualised medical services and creating
national surveillance. They cautioned that it is not advisable
to diagnose without making provision for services after diag-
nosis. They reported that individualised services would be
too expensive and appropriate logistics have to be imple-
mented for national surveillance. In round 2, we decided to
separate integrated and individualised medical services. Only
integrated service reached the consensus (88%) acceptable in
this study.
Community/social-related proposed management measures
None of the statements attained 100% consensus in
round 1, whereas one reached 100% agreement in
round 2 (Additional file 1g). Besides one statement, all
the others achieved a consensus of 90% or more. The
promotion of grant/social welfare for individuals with
FASD attained the lowest consensus (49%). One of the
reasons given for the low consensus was that promoting
grants and social welfare would encourage women to
drink during pregnancy to receive these benefits.
Following the two rounds of responses in the Delphi
process, we selected only those statements that qualified
by 85% in either round to be included in the guideline
(Table 4).
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Table 4 A proposed guideline for policy on the prevention and
management of FASD.
Overall guiding principles of the policy
The panel agreed that policy to inform the prevention and
management of FASD should
•Be holistic, considering the prevention, diagnosing and management
of FASD.
•Consider the individuals with FASD and their caregivers.
•Involve all relevant government departments such as the departments
of health, education, justice, social development, trade and
industry, labour.
•Consider the needs of individuals with FASD throughout their lifespan.
•Involve the collaborative action of various professionals (social service,
justice and healthcare); healthcare professionals from the doctors,
midwives, nurses, to the community healthcare workers.
•Be holistic, considering the prevention, diagnosing and management
of FASD.
•Adopt a human rights-based approach, which protects and promotes
the rights of women, children, families and communities affected by
FASD and recognises the principles of non-discrimination, participation,
inclusion, equity and access.
•Adopt a public health framework, which acknowledges drinking during
pregnancy and FASD are part of a complex interplay of biological,
social, psychological, environmental and economic factors.
•Be culturally diverse and culturally sensitive, acknowledging the
importance and strength of cultural values and norms.
•Use relevant and current evidence to inform practice and interventions
to strengthen the knowledge base to effectively prevent and
manage FASD.
•Establish clear referral pathways for the effectiveness of the prevention
and management FASD
•Avoid victim blaming that is placing women at the centre of the
FASD problem, which will not consider them as the perpetrators
of the problem.
•Consider cost-effective interventions, which encourages a population-
wide approach and enhances a wider coverage.
•Be family-centred, service providers must acknowledge and value the
need for individuals within the family structure.
•Address social determinants of health contributing to FASD.
•Consider input from individuals with FASD and their families in
developing a policy for the prevention and management of FASD.
•Promote responsible parenting, which recognises human values and
enhance the development of individuals with FASD.
FASD prevention measures
Education-related prevention measures for FASD
The panel agreed that an FASD policy on education-related prevention
should contain strategies to
•Increase awareness of the dangers of drinking alcoholic beverages
during pregnancy in educational settings.
•Assist individuals with alcohol-use problems in educational settings to
access treatment.
•Address the barriers to access treatment for alcohol-related problems
in educational settings.
•Address stigma associated with alcohol abuse in educational settings.
•Improve training of teachers on FASD prevention/awareness programme.
•Facilitate the development and implementation of FASD awareness
Table 4 A proposed guideline for policy on the prevention and
management of FASD. (Continued)
programmes in educational settings.
•Facilitate the use of peer education for FASD awareness programme in
educational settings.
•Promote healthy lifestyle in schools through sport and other extra-
curricular activities.
•Discourage the establishment of the liquor stores in the proximity of
educational settings.
•Promote the education of young individuals about healthy pregnancy
in educational settings.
•Facilitate the teaching of responsible parenthood in educational settings.
•Improve the teaching of safe sex practices in educational settings.
Health-related prevention measures for FASD
The panel agreed that an FASD policy on health-related prevention
should contain strategies to
•Improve the screening of alcohol use in clinics and hospitals.
•Improve documentation on the alcohol history for women, especially
pregnant women.
•Facilitate the inclusion of FASD prevention as a part of health
promotion activities in clinics and hospitals.
•Improve the education of individuals and couples on the dangers of
drinking alcoholic beverages during pregnancy in the pre-conception clinic.
•Improve the education of individuals and couples on the dangers of
drinking alcoholic beverages during pregnancy in the reproductive clinic.
•Encourage the use of visible posters and pamphlets for FASD
prevention campaigns in all clinics and hospitals.
•Improve the training of healthcare professionals on FASD prevention.
•Improve early and appropriate referral to treatment for individuals
(including women) with alcohol misuse issues.
•Empower health professionals with the skills to counsel and ask
questions about alcohol use in a safe and appropriate way.
•Promote the use of contraceptives to avoid unplanned pregnancy.
•Improve assistance to parents of individuals with FASD to avoid having
another child with FASD.
Community/social-related prevention measures for FASD
The panel agreed that an FASD policy on community-related prevention
should contain strategies to
•Improve education and public awareness of the dangers of alcohol abuse.
•Improve the education of all people in the community on the dangers
of drinking alcohol during pregnancy.
•Improve the education of individuals and couples on the dangers of
drinking alcohol during pregnancy in the community.
•Encourage the use of community groups for FASD prevention
(education and awareness).
•Improve the training of the community health /community-based
workers and youth care/social workers on FASD prevention.
•Facilitate early intervention and assistance for individuals with alcohol-
use problems in the community.
•Facilitate the creation of social programmes such as skills training
and empowerment programmes for women in the community.
•Improve awareness and education on FASD in the workplace, rural and
urban areas and farming communities.
•Promote the use of multimedia such as posters, adverts, pamphlets, TV,
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Discussion
In this study, we aimed to develop a guideline that could
assist policymakers in designing a holistic, comprehen-
sive and multi-sectoral policy toward the prevention and
management of FASD in South Africa. We considered a
guideline as a document that contains evidence-based
recommendations for the prevention and management
of FASD and systematically developed statements cap-
able of guiding policymakers to develop a holistic policy.
This guideline has the potential to assist South African
Table 4 A proposed guideline for policy on the prevention and
management of FASD. (Continued)
social media and road shows for FASD awareness in the communities.
•Improve enforcement of liquor laws and regulation of shebeens to
control accessibility and availability of alcohol in the community.
•Improve access to treatment for people with alcohol use problems in
the community.
•Improve smooth aftercare and community reintegration for people
who have attended alcohol rehab.
•Promote afterschool activities in the community to prevent early
exposure of adolescents to alcohol.
•Mandate labels on alcohol containers to contain information on the
dangers of drinking alcoholic beverages during pregnancy.
•Mandate that liquor stores have warning signs regarding alcohol
and pregnancy.
•Enable the creation of support groups for individuals with alcohol
misuse issues in the community.
•Facilitate the training of the community and religious leaders on
FASD prevention.
•Promote collaboration and the use of non-profit organisation (NPO) for
FASD prevention.
•Utilise the community and religious leaders to increase FASD
awareness among their communities.
•Promote the expansion and adoption of NPO evidence-based interven-
tions for prevention in the community.
•Improve assistance to families to support individuals with alcohol
use problems.
•Improve interventions services for mothers who have a child with
FASD in the community.
FASD management measures
Education-related management measures for FASD
The panel agreed that an FASD policy on education-related manage-
ment should contain strategies to
•Facilitate the development of a curriculum that accommodates
individuals with FASD.
•Improve the training of teachers on classroom management for
individuals with FASD.
•Promote skill schools for learners with learning disabilities (including
individuals with FASD) that are not benefiting from formal education.
•Provide special assistance for individuals with FASD within
mainstream schools.
•Facilitate the creation of the special schools for learners with a learning
disability (including individuals with FASD) that are not benefiting from
mainstream schooling.
•Facilitate the education of parents on the needs and management of
individuals with FASD.
Health-related management measures for FASD
The panel agreed that an FASD policy on the health-related
management should contain strategies to
•Increase capacity building re diagnosis among health professionals.
•Facilitate FASD screening for all children that are known to have been
prenatally exposed to alcohol.
•Provide diagnostic services for individuals.
•Promote diagnosis for school children, adolescents and adults to
reduce rates of people who are left undiagnosed or misdiagnosed.
Table 4 A proposed guideline for policy on the prevention and
management of FASD. (Continued)
•Promote appropriate referral pathways to services after diagnosis.
•Facilitate the creation of diagnostic centres in clinics, hospitals
and communities.
•Facilitate the creation of national surveillance for FASD via reports from
health professionals.
•Encourage routine consideration of FASD re the diagnosis and
management of mental illness and developmental disorders.
•Provide integrated medical services for individuals with FASD.
Community/social-related management measures for FASD
The panel agreed that an FASD policy on the community-related man-
agement should contain strategies to
•Provide skills training and empowerment programmes for those who
need it among individuals with FASD.
•Facilitate appropriate employment opportunities for individuals
with FASD.
•Facilitate the training of community health workers/community-based
workers/ youth care workers/ social workers and professionals within
the judiciary system re FASD management.
•Improve the training of the biological and foster parents/caregivers
regarding the management of FASD.
•Promote the empowerment of the parents/caregivers of individuals
with FASD in the community.
•Promote the establishment of support systems for biological and foster
parents/caregivers and individuals with FASD in the community.
•Promote the referral of parents and individuals with FASD to
appropriate services.
•Provide effective counselling services for parents and individuals
with FASD.
•Encourage family/community support for individuals with FASD.
•Provide support for individuals with FASD in child protection/foster
care and the criminal justice system.
•Facilitate the creation of structure and supportive environment at
home, school and beyond.
•Facilitate the provision of adequate information about individuals with
for the adoptive parents.
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policymakers in developing a policy that will address
FASD considering the acceptable consensus (85%). Fur-
thermore, it can be adapted or adopted to guide the de-
velopment of policy for the prevention and management
of FASD in other countries, especially within sub-Sahara
Africa.
Our findings indicated good support for the proposed
approaches and principles of FASD policy. This support
confirms our proposition that policies designed to guide
the prevention and management of FASD should be hol-
istic, user- and caregiver-focused, culturally diverse and
sensitive, considerate of needs across the lifespan, collab-
orative, have clear referral pathways, evidence-based and
inter-departmental. These policies should also use the
public health framework, and be human rights-based,
inter-departmental, collaborative, culturally diverse and
sensitive, evidence-based, cost-effective and family-centred
approach [34,36,37]. If these perspectives are taken into
consideration, the chances of obtaining a policy that en-
hances effective and sustainable programmes to prevent
and manage FASD such as those developed in Australia
and Canada are high [34,36,37].
While designing the initial guideline, based on the find-
ing from previous phases, we considered adding that
FASD policies should be women-centred. Nevertheless,
the experts in the Delphi approach suggested that
women-centeredness as a guiding principle has the ten-
dency to promote stigmatisation and victim-blaming of
women. Stigma may also influence the prevention and
management of FASD as has been reported [9]. The opin-
ions expressed by these participants are consistent with
the current policy discourses to re-contextualise and de-
colonise FASD policies and reframe the problem of FASD
in a way that avoids victim-blaming [33]. This principle
supports the argument that drinking during pregnancy
should not be criminalised [39]. Rather, women with alco-
hol problems should be assisted. Therefore, an FASD pol-
icy must address multiple factors (local and systemic) that
predispose women to alcohol abuse [33]. An FASD policy
should also address the social, structural and economic
factors affecting health behaviour and examine the grow-
ing gap in health inequities [33]. Thus, the notion of hav-
ing a policy which addresses upstream drivers (social
determinants of health contributing to FASD) is in align-
ment with these arguments [40].
A FASD prevention policy should support the training
of teachers for FASD prevention and awareness as well
as classroom management and the modification of cur-
riculum for the benefit of individuals with FASD in an
educational setting. These findings are supported by
studies conducted to examine the relational experience
of educators and the education needs of children with
FASD [41,42]. The authors of these studies recommend
specialised training for educators, empowering them to
assist individuals with FASD in the classroom to maxi-
mise their potential [41,42]. Adequately trained educa-
tors can address the challenges of FASD in the
classroom [43]. Goal 2 and priority 3 of the Canadian
framework for action on FASD and the Australian na-
tional strategy for FASD, respectively emphasised on
capacity development [36,37]. We also recorded strong
agreement on special assistance for individuals with
FASD within the mainstream schools, so that they can
benefit from inclusive education. Authors have advo-
cated for specialised FASD classrooms and inclusive
classrooms with FASD support [10].
Increasing the education and raising awareness around
FASD, especially on the dangers of consuming alcohol
during pregnancy in educational settings, clinics, com-
munities and public places should also form a part of an
FASD prevention policy. The need for education and
awareness programmes is accentuated as research sup-
ports the efficacy of awareness intervention, particularly
in areas where they are low [26]. These findings echo
the urgent call for awareness in South Africa on the dan-
gers of prenatal alcohol exposure and the overwhelming
consequence of FASD on the lives of children, families
and communities [3]. Comprehensive awareness and
health promotion efforts correspond to the first level of
prevention of the four-part model of prevention for
FASD [44]. Awareness is also a core part of FASD policy
strategies in Australia and Canada [34,36,37]. There-
fore, awareness should be an integral part of a policy
guiding the prevention and management of FASD [23].
The first step toward managing FASD in a proposed
policy should include the screening of all children who
are known to have been prenatally exposed to alcohol.
This targeted screening has also been supported by
another study [45]. The respondents, nevertheless,
cautioned that it is dangerous to screen and diagnose
without adequate care and management services. We
also found a high agreement with the idea that an FASD
policy should include programmes for screening for
alcohol use at clinics and hospitals and proper documen-
tation of the history of alcohol use. Therefore, healthcare
providers must be equipped with the necessary skills to
have informed discussions on alcohol use with women
[44,46]. Discussing alcohol consumption and document-
ing its history also forms part of the recommendations
of the Canadian framework for action on FASD, and the
Australian action plans for FASD [34,36,37].
Training professionals (health care, social service,
criminal justice and judiciary) regarding the preven-
tion, screening, identification, diagnosis and manage-
ment of FASD should also be considered in FASD
policy. The continuous education and training of the
professionals to improve their knowledge regarding FASD
have also been advocated by some authors [47–51]. The
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training of these professionals is important because the
prevention and management of FASD require a highly
skilled multidisciplinary team [12–15]. Training is also
essential as it is difficult to manage FASD because of
its negative educational, health and social outcomes
[52]. The training of parents and caregivers on the
needs and how to care for individual with FASD
should also be considered when designing policies to
inform FASD programmes and interventions. There-
fore, training is important, as the needs of individuals
with FASD are enormous and parents/caregivers may
not have sufficient knowledge of raising individuals
with FASD [53]. Policies for FASD in other parts of
the world have also considered the training of profes-
sionals in addressing FASD [34,36,37].
Our findings indicated the inclusion of support to the
parents, caregivers, and individuals with FASD in policy
which is relevant. These findings reflect one of the prac-
tice points for primary healthcare providers [PHCP],
stipulating that “PHCP should be aware of FASD sup-
port services in their community and refer families to
educational and family supports early”[54]. These find-
ings also correspond to level four of the four-part model
for FASD –postpartum support for new mothers and
supports for child assessments and development [44].
The need for more support for families raising children
with FASD has been indicated in a study [53]. Further-
more, Kapasi [55] found caregivers of individuals with
FASD to have challenges, indicating the need for
support. Challenges such as extra responsibility, diffi-
culty in keeping a daily routine, feeling stigmatised and
isolated, managing a child with antisocial behaviour
problems and working with a child with diminished ex-
ecutive functioning [55]. Moreover, policies developed in
Australia and Canada also advocated for support of the
parents, caregivers, and individuals with FASD and com-
munity [34,36,37].
Strengths and limitations
We followed a systematic empirical process to elicit infor-
mation toward formulating the questionnaire. We devel-
oped the questionnaire using the findings of four different
studies, with the aim of enhancing its content and quality.
This process allowed us to gather credible information to
be included in the questionnaire as all the participants had
expertise/knowledge regarding FASD.
The questionnaire was also shared with local and
international experts on FASD for comments and im-
provement through a discursive process to ensure the
essential parts were covered before it was used for the
Delphi approach. The use of the Delphi approach pro-
vides the opportunity for participants to provide their
opinions without fear of having differing views with
others. This approach led to a wide range of opinions,
which improved the guideline. The Delphi approach
provides a strong basis for the construct validity of the
questionnaire with participants being able to validate
their initial responses and identify areas of uncertainty.
The Delphi approach used in this study also allows con-
trolled feedback, which provided the researchers with an
opportunity to organise information, if applicable re-
move duplicates before exchanging the information with
the experts.
The purposive and snowballing sampling method used
may not have provided the true representation of all the
individuals who are knowledgeable or working in the
area of FASD. Therefore, this method could have limited
the conclusion drawn from the study. A lack of partici-
pation from criminal justice and judicial professionals is
also a limitation of this study, as their perspectives have
been considered essential in the literature. Additionally,
we did not include individuals with FASD and their bio-
logical or foster parents and caregivers.
Conclusion
FASD in South Africa deserves urgent attention, especially
from the government in terms of the policy to coordinate
relevant prevention and management programmes and in-
terventions. Developing a comprehensive and inter-sectoral
policy to guide programmes and interventions for the pre-
vention and management of FASD could be a good starting
point. The guideline developed has the potential to assist
the policymakers in the development of a holistic, multi-
sectoral and comprehensive policy for FASD or could
streamlinediscussionsonanFASDpolicyinotherrelevant
contexts.
Supplementary information
Supplementary information accompanies this paper at https://doi.org/10.
1186/s12913-019-4677-x.
Additional file 1. a. Agreement with the statements on guiding
principle and approach. b. Agreement with statements on education-
related proposed prevention measures. c. Agreement with statements on
health-related proposed prevention measures. d. Agreement with
statements regarding community/social-related proposed prevention
measures. e. Agreement with statements regarding education-related
proposed management measures. f. Agreement with statements
regarding health-related proposed management measures. g. Agreement
with statements regarding community/social-related proposed
management measures.
Abbreviation
ARBD: Alcohol-related birth defects; ARND: Alcohol-related
neurodevelopmental disorder; FARR: Foundation for alcohol related research;
FAS: Fetal alcohol syndrome; FASD: Fetal alcohol spectrum disorder;
NPO: Non-profit Organisation; PFAS: Partial fetal alcohol syndrome;
PHCP: Primary healthcare providers; SPSS: Statistical Package for Social
Science; WHO: World Health Organization
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Acknowledgements
We thank all the experts who participated in the study (Carol Bower, Hayley
Passmore, Leana Olivier, Leslie London, Lizahn Cloete, Martyn Symons,
Natasha Reid and Rochelle Watkins).
Also, we would like to thank the following organisations: Abedare Primary
School, Bel Porto School, FASfacts, Home of Hope, Foundation for Alcohol
Related Research, Karitas Schools, Khayelitsha (Site B) Community Health
Centre, Khayelitsha Hospital, Mowbray Maternity Hospital, Red Cross War
Memorial Children’s Hospital, Western Cape Department of Education,
Western Cape Department of Health, Western Cape Department of Social
Development and Western Cape Substance Abuse Forum. In addition, we
would like to thank the peer reviwers (Debra Jackson and Roy Grant) for
their constructive comments.
Authors’contributions
The study was conceived and conceptualised by BOA and FCM. BOA, FCM
and AMB contributed to the development of the methodology of this study.
BOA and FCM analysed and interpreted the data. BOA wrote the first draft of
the manuscript. FCM and AMB provided editorial and content input to
improve the manuscript. All the authors read and approved the final
manuscript.
Funding
No funding declared.
Availability of data and materials
More information on data from this study is available by contacting the
corresponding author.
Ethics approval and consent to participate
This study is a part of the larger study. The approval for the larger study was
obtained from the research ethics committee of the University of the
Western Cape, Cape Town, South Africa. (BM/16/4/4). A written consent was
obtained from all the participants.
Consent for publication
Not applicable.
Competing interests
The authors declare that they have no competing interests.
Author details
1
School of Public Health, University of the Western Cape, Cape Town 8001,
South Africa.
2
Department of Social Work, University of the Western Cape,
Cape Town, South Africa.
Received: 12 June 2019 Accepted: 24 October 2019
References
1. Lange S, Probst C, Gmel G, et al. Global prevalence of fetal alcohol
Spectrum disorder among children and youth. JAMA Pediatr. 2017;171:948.
2. Home - FARR SA, https://www.farrsa.org.za/ (Accessed 7 Jan 2019).
3. Olivier L, Curfs LMG, Viljoen DL. Fetal alcohol spectrum disorders: prevalence
rates in South Africa. South African Med J. 2016;106:103–6.
4. May P, De Vries M, Marais A-S, et al. Replication of high fetal alcohol
spectrum disorders prevalence rates, child characteristics, and maternal risk
factors in a second sample of rural communities in South Africa. Int J
Environ Res Public Health. 2017;14:522.
5. Urban MF, Olivier L, Viljoen D, et al. Prevalence of fetal alcohol syndrome in
a south African city with a predominantly black African population. Alcohol
Clin Exp Res. 2015;39:1016–26.
6. Denny LC, S Blitz R. Fetal alcohol syndrome and fetal alcohol Spectrum
disorders. Am Fam Physician. 2017;96:515–22.
7. Williams JF, Smith VC, ABUSE COS. Fetal alcohol Spectrum disorders.
Pediatrics. 2015;136:e1395–406.
8. Badry D, Choate P. Social work & social sciences review. Whiting & Birch
Ltd, 2015. https://journals.whitingbirch.net/index.php/SWSSR/article/view/
795/867. Accessed 7 Jan 2019.
9. Bell E, Andrew G, Di Pietro N, et al. It’s a shame! Stigma against fetal alcohol
Spectrum disorder: examining the ethical implications for public health
practices and policies. Public Health Ethics. 2016;9:65–77.
10. Millar JA, Thompson J, Schwab D, et al. Educating students with FASD:
linking policy, research and practice. J Res Spec Educ Needs. 2017;17:3–17.
11. Select Committee on Action to Prevent Foetal Alcohol Spectrum Disorder.
The preventable disability. 2015. https://parliament.nt.gov.au/__data/assets/
pdf_file/0005/363254/Final_FASD_Report.pdf. Accessed 1 Nov 2019.
12. Chasnoff IJ, Wells AM, King L. Misdiagnosis and missed diagnoses in
Foster and Adopted children with prenatal alcohol exposure. Pediatrics.
2015;135:264–70.
13. Burd L. FASD and ADHD: are they related and how? BMC Psychiatry.
2016;16:325.
14. Benz J, GA CR. History, challenges, and future directions. 2009;14:231–7.
15. Jamieson PA. The challenge of supporting children with fetal alcohol Spectrum
disorder in Aotearoa New Zealand : a narrative literature review; 2017.
16. Reid N, Dawe S, Shelton D, et al. Systematic review of fetal alcohol
spectrum disorder interventions across the life span. Alcohol Clin Exp Res.
2015;39:2283–95.
17. Chudley AE, Conry J, Cook JL, et al. Fetal alcohol Spectrum disorder:
Canadian guidelines for diagnosis. CMAJ. 2005;172:S1–S21.
18. Cook JL, Green CR, Lilley CM, et al. Fetal alcohol spectrum disorder: a
guideline for diagnosis across the lifespan. CMAJ. 2016;188:191–7.
19. Hoyme HE, Kalberg WO, Elliott AJ, et al. Updated clinical guidelines for
diagnosing fetal alcohol spectrum disorders. Pediatrics. 2016;138:e20154256.
20. Jonsson E, Salmon A, Warren KR. The international charter on prevention of
fetal alcohol spectrum disorder. Lancet Glob Health. 2014;2:e135–7.
21. Rendall-Mkosi K, London L, Adnams C, et al. Fetal alcohol spectrum
disorder in South Africa: situational and gap analysis. Pretoria: UNICEF;
2008. https://www.unicef.org/southafrica/SAF_resources_fetalalcohol.pdf
(Accessed 14 Sept 2017)
22. Roozen S, Black D, Peters G-JY, et al. Fetal alcohol Spectrum disorders
(FASD): an approach to effective prevention. Curr Dev Disord Rep.
2016;3:229–34.
23. Becoming RD, FASD. Informed: strengthening practice and programs
working with women with FASD. Subst Abus. 2016;10:13–20.
24. Adebiyi BO, Mukumbang FC, Cloete LG, et al. Policymakers’perspectives
towards developing a guideline to inform policy on fetal alcohol Spectrum
disorder: a qualitative study. Int J Environ Res Public Health. 2019;16(6):945.
https://doi.org/10.3390/ijerph16060945 Epub ahead of print.
25. Adebiyi BO, Mukumbang FC, Cloete LG, et al. Exploring service providers’
perspectives on the prevention and management of fetal alcohol spectrum
disorders in South Africa: a qualitative study. BMC Public Health. 2018;18(1):
1238. https://doi.org/10.1186/s12889-018-6126-x Epub ahead of print.
26. Chersich MF, Urban M, Olivier L, et al. Universal prevention is
associated with lower prevalence of fetal alcohol spectrum disorders in
northern cape, South Africa: a multicentre before-after study. Alcohol
Alcohol. 2012;47:67–74.
27. May PA, Marais A-S, Gossage JP, et al. Case management reduces
drinking during pregnancy among high risk women. Int J Alcohol Drug
Res. 2013;2:61–70.
28. Adebiyi BO, Mukumbang FC, Beytell A-M. To what extent is fetal alcohol
Spectrum disorder considered in policy-related documents in South Africa?
A document review. Heal Res Policy Syst. 2019;17:46.
29. London leslie. South Africa fails to tackle its high foetal alcohol syndrome
rate; 2015. http://theconversation.com/south-africa-fails-to-tackle-its-high-
foetal-alcohol-syndrome-rate-46791 (Accessed 18 Dec 2018)
30. Adebiyi BO, Mukumbang FC, Okop KJ, et al. A modified Delphi study
towards developing a guideline to inform policy on fetal alcohol spectrum
disorders in South Africa: a study protocol. BMJ Open. 2018;8:e019907.
31. Foundation for Alcohol Related Research (FARR). What we do - FARR SA;
2018. https://www.farrsa.org.za/what-we-do/ (Accessed 16 July 2018)
32. FASfacts. FASfacts runs FAS prevention campaigns in schools and
communities; 2018. http://www.fasfacts.org.za/About-Us/FASfacts-
Programmes (accessed 16 July 2018)
33. Hunting G, Browne AJ. Decolonizing policy discourse: reframing the
‘problem’of fetal alcohol spectrum disorder. Women’s Heal Urban Life.
2012;11:35–53.
34. Foundation for Alcohol Education and Research. The Australian fetal alcohol
Spectrum disorders action plan 2013–2016; 2013. https://www.fare.org.au/
wp-content/uploads/research/FARE-FASD-Plan.pdf (Accessed 5 Feb 2018)
Adebiyi et al. BMC Health Services Research (2019) 19:809 Page 12 of 13
Content courtesy of Springer Nature, terms of use apply. Rights reserved.

35. Adnams CM. Fetal alcohol spectrum disorder in Africa. Curr Opin Psychiatry.
2017;30:108–12.
36. Public Health Agency of Canada. Fetal alcohol spectrum disorder (FASD) : a
framework for action. Health Canada; 2003. https://www.canada.ca/en/
public-health/services/reports-publications/fetal-alcohol-spectrum-disorder-
fasd-framework-action.html (Accessed 8 Aug 2018)
37. Australian Government. Title: National Fetal Alcohol Spectrum Disorder
Strategic Action Plan; 2018. http://www.dpmc.gov.au/government/
commonwealth-coat-arms (Accessed 22 Feb 2019)
38. Adebiyi BO, Mukumbang FC, Erasmus C. The distribution of available
prevention and management interventions for fetal alcohol Spectrum
disorder (2007 to 2017): implications for collaborative actions. Int J Environ
Res Public Health. 2019;16:2244.
39. Gardner J. South African journal of bioethics and law. S Afr J Bioeth Law.
2016;9:26.
40. Sanders J, Currie CL. Looking further upstream to prevent fetal alcohol
spectrum disorder in Canada. Can J Public Heal. 2014;105:e450–2.
41. Van Schalkwyk I, Marais S. Educators’relational experiences with learners
identified with fetal alcohol spectrum disorder. S Afr J Educ. 2017;37:1–9.
42. Millians MN. Educational needs and Care of Children with FASD. Curr Dev
Disord Rep. 2015;2:210–8.
43. Blackburn C, Whitehurst T. Fetal alcohol spectrum disorders (FASD): raising
awareness in early years settings. Br J Spec Educ. 2010;37:122–9.
44. Poole N, Schmidt RA, Green C, et al. Prevention of fetal alcohol spectrum
disorder: current Canadian efforts and analysis of gaps. Subst Abus. 2016;10:1–11.
45. Watkins RE, Elliott EJ, Wilkins A, et al. Recommendations from a consensus
development workshop on the diagnosis of fetal alcohol spectrum
disorders in Australia. BMC Pediatr. 2013;13:156.
46. Coons KD, Watson SL, Yantzi NM, et al. Health care students’attitudes about
alcohol consumption during pregnancy: responses to narrative vignettes.
Glob Qual Nurs Res. 2017;4:2333393617740463.
47. Payne J, France K, Henley N, et al. Changes in health professionals’
knowledge, attitudes and practice following provision of educational
resources about prevention of prenatal alcohol exposure and fetal alcohol
Spectrum disorder. Paediatr Perinat Epidemiol. 2011;25:316–27.
48. Payne JM, Watkins RE, Jones HM, et al. Midwives’knowledge, attitudes and
practice about alcohol exposure and the risk of fetal alcohol spectrum
disorder. BMC Pregnancy Childbirth. 2014;14:377.
49. Mutch RC, Jones HM, Bower C, et al. Fetal alcohol Spectrum disorders: using
knowledge, attitudes and practice of justice professionals to support their
educational needs. J Popul Ther Clin Pharmacol. 2016;23:e77–89.
50. Passmore HM, Mutch RC, Burns S, et al. Fetal alcohol Spectrum disorder
(FASD): knowledge, attitudes, experiences and practices of the Western
Australian youth custodial workforce. Int J Law Psychiatry. 2018;59:44–52.
51. Cox LV, Clairmont D, Cox S. Knowledge and attitudes of criminal justice
professionals in relation to fetal alcohol Spectrum disorder. Can J Clin
Pharmacol. 2008;15:e306–13.
52. Centers for Disease Control and Prevention (CDC). Fetal alcohol Spectrum
disorders (FASDs) | NCBDDD | CDC; 2018. https://www.cdc.gov/ncbddd/
fasd/index.html (Accessed 7 May 2018)
53. Coons KD, Watson SL, Schinke RJ, et al. Adaptation in families raising
children with fetal alcohol spectrum disorder. Part I: what has helped. J
Intellect Develop Disabil. 2016;41:150–65.
54. Hanlon-Dearman A, Green CR, Andrew G, et al. Anticipatory guidance for
children and adolescents with fetal alcohol spectrum disorder (FASD):
practice points for primary health care providers, 2015. https://www.
researchgate.net/profile/Ana_Hanlon-Dearman/publication/271140236_
Anticipatory_Guidance_for_Children_and_Adolescents_with_Fetal_Alcohol_
Spectrum_Disorder_FASD_Practice_Points_for_Primary_Health_Care_
Providers/links/5504684b0cf2d60c0e677bc9/Ant (Accessed 7 June 2017).
55. Kapasi A. ‘Caregivers “Experiences Raising a Child with Fetal Alcohol
Spectrum Disorder”’. Other psychology commons; 2015. https://ir.lib.uwo.ca/
etd/2713 (Accessed 22 Feb 2019)
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