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.

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Policymakers’ Perspectives Towards Developing a Guideline to Inform Policy on Fetal Alcohol Spectrum Disorder: A Qualitative Study

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph16060945 ◽

2019 ◽

Vol 16 (6) ◽

pp. 945 ◽

Cited By ~ 3

Author(s):

Babatope O. Adebiyi ◽

Ferdinand C. Mukumbang ◽

Lizahn G. Cloete ◽

Anna-Marie Beytell

Keyword(s):

South Africa ◽

Qualitative Study ◽

Fetal Alcohol Spectrum Disorder ◽

Analytical Framework ◽

Spectrum Disorder ◽

Fetal Alcohol ◽

Policy Documents ◽

Specific Policy ◽

Fetal Alcohol Spectrum ◽

Current Practices

Fetal alcohol spectrum disorder (FASD) has a high prevalence in South Africa, especially among the poor socioeconomic communities. However, there is no specific policy to address FASD. Using a qualitative study design, we explored the perspectives of policymakers on guidelines/policies for FASD, current practices and interventions, and what practices and interventions could be included in a policy for FASD. The data analysis was done using the Framework Method. Applying a working analytical framework to the data, we found that there is no specific policy for FASD in South Africa, however, clauses of FASD policy exist in other policy documents. Preventive services for women and screening, identification, assessment, and support for children are some of the current practices. Nevertheless, a multi-sectoral collaboration and streamlined program for the prevention and management of FASD are aspects that should be included in the policy. While there are generic clauses in existing relevant policy documents, which could be attributed to the prevention and management of FASD, these clauses have not been effective in preventing and managing the disorder. Therefore, a specific policy to foster a holistic and coordinated approach to prevent and manage FASD needs to be developed.

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Policy Requirements for the Prevention and Management of Fetal Alcohol Spectrum Disorder in South Africa: A Policy Brief

Frontiers in Public Health ◽

10.3389/fpubh.2021.592726 ◽

2021 ◽

Vol 9 ◽

Author(s):

Babatope O. Adebiyi ◽

Ferdinand C. Mukumbang ◽

Anna-Marie Beytell

Keyword(s):

South Africa ◽

Intellectual Disability ◽

Fetal Alcohol Spectrum Disorder ◽

Spectrum Disorder ◽

Fetal Alcohol ◽

Specific Policy ◽

The World ◽

Fetal Alcohol Spectrum ◽

Sectoral Policy

This policy brief is aimed to guide policymakers in developing a comprehensive and multi-sectoral policy for the prevention and management of fetal alcohol spectrum disorder (FASD). FASD is a leading source of non-genetic developmental and intellectual disability globally and is usually associated with primary and secondary disabilities. South Africa has been identified to have the highest reported prevalence of FASD in the world. Nevertheless, evidence shows that there is no specific policy for FASD, albeit there are clauses that could be attributed to its prevention and management in other existing policies. In this brief, we present a guideline to inform programmes and interventions to tackle the FASD problem in South Africa and other relevant contexts through developing a policy.

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Elements for developing community-based interventions for adults with fetal alcohol spectrum disorder: A scoping review

British Journal of Occupational Therapy ◽

10.1177/0308022618790206 ◽

2018 ◽

Vol 82 (4) ◽

pp. 201-212

Author(s):

Ryan Quan ◽

E Sharon Brintnell ◽

Ada WS Leung

Keyword(s):

Scoping Review ◽

Fetal Alcohol Spectrum Disorder ◽

Service Providers ◽

Spectrum Disorder ◽

Fetal Alcohol ◽

Community Based Interventions ◽

Community Based ◽

Daily Lives ◽

High Prevalence ◽

Fetal Alcohol Spectrum

Introduction Current literature about interventions for adults with fetal alcohol spectrum disorder (FASD) is limited, which is a concern, due to the high prevalence of FASD. FASD creates lifelong physical, mental, cognitive and behavioral deficits, which impacts many aspects of daily living. Community-based interventions are necessary to better support adults with FASD and provide them with the opportunity to achieve success in their daily lives and social participation. This scoping review aimed to identify elements for developing successful community-based interventions for these individuals. Method A search was conducted in the MEDLINE, PsycINFO, CINAHL, and EMBASE databases and supplementary gray literature was resourced. Articles were selected based on inclusion–exclusion criteria, and a thematic analysis was completed to identify and present relevant findings. Results Seven articles met selection criteria and were included in this review. Six emerging themes were identified: inclusion of a functional context, individualized support, education for service providers, structure and routine, utilizing a strengths-based approach, and environmental adaptations. These themes were used to present the findings related to the elements necessary for developing interventions for adults with FASD. Conclusion The results indicate that the identified elements may be necessary to develop successful interventions, especially community-based interventions, for adults with FASD.

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Developmental delay of infants and young children with and without fetal alcohol spectrum disorder in the Northern Cape Province, South Africa

African Journal of Psychiatry ◽

10.4314/ajpsy.v14i4.7 ◽

2011 ◽

Vol 14 (4) ◽

Cited By ~ 13

Author(s):

L Davies ◽

M Dunn ◽

M Chersich ◽

M Urban ◽

C Chetty ◽

...

Keyword(s):

South Africa ◽

Young Children ◽

Developmental Delay ◽

Fetal Alcohol Spectrum Disorder ◽

Spectrum Disorder ◽

Fetal Alcohol ◽

Northern Cape ◽

Fetal Alcohol Spectrum ◽

Infants And Young Children

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Prevention of Fetal Alcohol Spectrum Disorder: Current Canadian Efforts and Analysis of Gaps

Substance Abuse Research and Treatment ◽

10.4137/sart.s34545 ◽

2016 ◽

Vol 10s1 ◽

pp. SART.S34545 ◽

Cited By ~ 11

Author(s):

Nancy Poole ◽

Rose A. Schmidt ◽

Courtney Green ◽

Natalie Hemsing

Keyword(s):

Fetal Alcohol Spectrum Disorder ◽

Service Providers ◽

Public Awareness ◽

Spectrum Disorder ◽

Childbearing Age ◽

Fetal Alcohol ◽

Effective Prevention ◽

Risky Alcohol ◽

Level 3 ◽

Fetal Alcohol Spectrum

Effective prevention of risky alcohol use in pregnancy involves much more than providing information about the risk of potential birth defects and developmental disabilities in children. To categorize the breadth of possible initiatives, Canadian experts have identified a four-part framework for fetal alcohol spectrum disorder (FASD) prevention: Level 1, public awareness and broad health promotion; Level 2, conversations about alcohol with women of childbearing age and their partners; Level 3, specialized support for pregnant women; and Level 4, postpartum support for new mothers. In order to describe the level of services across Canada, 50 Canadian service providers, civil servants, and researchers working in the area of FASD prevention were involved in an online Delphi survey process to create a snapshot of current FASD prevention efforts, identify gaps, and provide ideas on how to close these gaps to improve FASD prevention. Promising Canadian practices and key areas for future action are described. Overall, Canadian FASD prevention programming reflects evidence-based practices; however, there are many opportunities to improve scope and availability of these initiatives.

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Fetal alcohol spectrum disorder: neurodevelopmentally and behaviorally indistinguishable from other neurodevelopmental disorders

BMC Psychiatry ◽

10.1186/s12888-019-2289-y ◽

2019 ◽

Vol 19 (1) ◽

Cited By ~ 3

Author(s):

Shannon Lange ◽

Kevin Shield ◽

Jürgen Rehm ◽

Evdokia Anagnostou ◽

Svetlana Popova

Keyword(s):

Neurodevelopmental Disorders ◽

Predictive Value ◽

Fetal Alcohol Spectrum Disorder ◽

Child Behavior Checklist ◽

Attention Problems ◽

Spectrum Disorder ◽

World Health ◽

Typically Developing ◽

Fetal Alcohol ◽

Fetal Alcohol Spectrum

Abstract Background The lack of universally accepted diagnostic criteria and the high rate of psychiatric comorbidity make it difficult to diagnose Fetal Alcohol Spectrum Disorder (FASD). In an effort to improve the diagnosis of FASD, the current study aimed to identify a neurodevelopmental profile that is both sensitive and specific to FASD. Methods A secondary analysis was conducted on data obtained from the Canadian component of the World Health Organization International Study on the Prevalence of FASD. Data on neurodevelopmental status and behavior were derived from a battery of standardized tests and the Child Behavior Checklist for 21 children with FASD, 28 children with other neurodevelopmental disorders, and 37 typically developing control children, aged 7 to 11 years. Two latent profile analyses were performed to derive discriminative profiles: i) children with FASD compared with typically developing control children, and ii) children with FASD compared with typically developing control children and children with other neurodevelopmental disorders. The classification function of the resulting profiles was evaluated using the sensitivity, specificity, positive predictive value (PPV), and negative predictive value (NPV). Confidence intervals (CIs) were approximated using 10,000 bootstrapped samples. Results The neurodevelopmental profile of FASD tested consisted of impairments in perceptual reasoning, verbal comprehension, visual-motor speed and motor coordination, processing speed (nonverbal information), attention and executive function, visuospatial processing, and language, in combination with rule-breaking behavior and attention problems. When children with FASD were compared with typically developing control children, a 2-class model fit the data best and resulted in a sensitivity of 95.2% (95% CI: 84.2–100.0%), specificity of 89.2% (95% CI: 78.4–97.5%), PPV of 83.3% (95% CI: 66.7–96.2%), and NPV of 97.1% (95% CI: 90.3–100.0%). When children with FASD were compared with typically developing control children and children with other neurodevelopmental disorders, the neurodevelopmental profile correctly identified only 56.9% (95% CI: 45.1–69.2%) of typically developing children and children with other neurodevelopmental disorders as not having FASD, and thus the profile was found not to be specific to children with FASD. Conclusion The findings question the uniqueness of children with FASD with respect to their neurodevelopmental impairments and behavioral manifestations.

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Global prevalence of alcohol use and binge drinking during pregnancy, and fetal alcohol spectrum disorder

Biochemistry and Cell Biology ◽

10.1139/bcb-2017-0077 ◽

2018 ◽

Vol 96 (2) ◽

pp. 237-240 ◽

Cited By ~ 20

Author(s):

Svetlana Popova ◽

Shannon Lange ◽

Charlotte Probst ◽

Gerrit Gmel ◽

Jürgen Rehm

Keyword(s):

Alcohol Use ◽

Binge Drinking ◽

Fetal Alcohol Spectrum Disorder ◽

Prenatal Alcohol Exposure ◽

Heavy Drinking ◽

Alcohol Exposure ◽

Spectrum Disorder ◽

World Health ◽

Fetal Alcohol ◽

Fetal Alcohol Spectrum

Alcohol use during pregnancy is an established cause of fetal alcohol spectrum disorder (FASD), with heavy drinking during pregnancy being explicitly linked to fetal alcohol syndrome (FAS). This paper presents recent estimates of the prevalence of: (i) any amount of alcohol use during pregnancy; (ii) one or more binge drinking episode(s) (4 or more standard drinks on a single occasion) during pregnancy; (iii) FAS; and (iv) FASD among the general population globally and by World Health Organization region. It is apparent, based on the presented estimates, that alcohol use and binge drinking occur frequently among pregnant women in many countries and as a result, FASD is a prevalent alcohol-related developmental disability. Urgent action is required around the globe to eliminate prenatal alcohol exposure and prevent future children, adolescents, and adults from having FASD.

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