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

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 Alcohol 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 estimated to be 196 to 276 per 1000 [4], while in the Northern 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 neurodevelopmental disorder {ARND} and alcohol-related birth defects {ARBD}), individuals must meet all or some of the range of identified criteria [17‐19]. These criteria include 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 requirements 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 interventions such as case management and universal prevention approaches to prevent FASD [26, 27], there is a lack of policy and resources to guide the expansion and implementation 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 Department 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 services regarding birth defects [29]. Because these documents 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 programmes, conducting medical and psycho-social FASD-related research and providing support and diagnostic services [31]. FASfacts, as an NPO, offers FASD prevention programmes through experiential learning, advertising campaigns using churches, films and theatres to pass FASD messages and mentoring of pregnant women [32]. These organisations obtain funding from the government by aligning their programmes to the existing generic policies.

Different approaches have been proposed to develop relevant and effective FASD policies. One such approach proposed 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 (involving all sectors and all levels of the government); and the human rights-based approach (acknowledging the principles of non-discrimination, participation, inclusion, equity and access) [34]. A women-centred approach, which 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 governments [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 absence 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].

In developing the guideline for the prevention and management of FASD, we adapted the World Health Organization’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.

In this study, we aimed to develop a guideline that could assist policymakers in designing a holistic, comprehensive 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 capable of guiding policymakers to develop a holistic policy. This guideline has the potential to assist South African policymakers in developing a policy that will address FASD considering the acceptable consensus (85%). Furthermore, it can be adapted or adopted to guide the development 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 holistic, user- and caregiver-focused, culturally diverse and sensitive, considerate of needs across the lifespan, collaborative, 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 enhances 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 finding 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 tendency to promote stigmatisation and victim-blaming of women. Stigma may also influence the prevention and management of FASD as has been reported [9]. The opinions expressed by these participants are consistent with the current policy discourses to re-contextualise and decolonise 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 alcohol problems should be assisted. Therefore, an FASD policy 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 growing gap in health inequities [33]. Thus, the notion of having a policy which addresses upstream drivers (social determinants of health contributing to FASD) is in alignment 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 curriculum 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 maximise their potential [41, 42]. Adequately trained educators 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 national 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 advocated 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, communities and public places should also form a part of an FASD prevention policy. The need for education and awareness programmes is accentuated as research supports 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 dangers 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]. Therefore, 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 documentation 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 documenting 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 prevention, screening, identification, diagnosis and management 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 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. Therefore, 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 professionals 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 practice points for primary healthcare providers [PHCP], stipulating that “PHCP should be aware of FASD support services in their community and refer families to educational and family supports early” [54]. These findings 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]. Furthermore, Kapasi [55] found caregivers of individuals with FASD to have challenges, indicating the need for support. Challenges such as extra responsibility, difficulty in keeping a daily routine, feeling stigmatised and isolated, managing a child with antisocial behaviour problems and working with a child with diminished executive functioning [55]. Moreover, policies developed in Australia and Canada also advocated for support of the parents, caregivers, and individuals with FASD and community [34, 36, 37].

FASD in South Africa deserves urgent attention, especially from the government in terms of the policy to coordinate relevant prevention and management programmes and interventions. Developing a comprehensive and inter-sectoral policy to guide programmes and interventions for the prevention 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 streamline discussions on an FASD policy in other relevant contexts.