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

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.

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

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.

To what extent is Fetal Alcohol Spectrum Disorder considered in policy-related documents in South Africa? A document review.

BACKGROUND: South Africa is considered to have the highest prevalence of fetal alcohol spectrum disorder (FASD) globally. Nevertheless, the extent to which the South African government has responded to the high FASD prevalence at the policy level is unclear. Herein, we aimed to identify targeted and generic clauses that could be attributed to the prevention and management of FASD in relevant South African policy documents. METHODS: We conducted a search of two search engines (PubMed and Google) and the websites of South African national and provincial departments from January to April 2018. A total of 33 policy documents were included in this review. Using content analysis, we sought documents that mention the terms 'fetal alcohol syndrome' and 'fetal alcohol spectrum disorder'. The Framework method was also used to thematically identify specific and generic clauses attributed to the prevention and management of FASD in South Africa. RESULTS: The content analysis indicated that 12 policy documents contained the searched terms. Findings from the thematic analysis showed that targeted and generic clauses for FASD exist in various policy documents. Some of the generic clauses focused on the regulation of liquor outlets, enforcement of liquor laws, and the general management of persons with mental and educational challenges. Specific clauses focused on creating platforms to improve the awareness, screening, identification and support for individuals with FASD. CONCLUSIONS: There is a noticeable increase in the number of policy documents that considered elements of FASD enacted in the last decade. Although this study revealed the existence of targeted and generic clauses that could be attributed to the prevention and management of FASD, the sustained high prevalence of FASD in South Africa, as reported in the literature, calls for more holistic and comprehensive approaches to tackle the FASD problem in South Africa.

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

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.

Exploring service providers' perspectives on the prevention and management of fetal alcohol spectrum disorders in South Africa: a qualitative study.

BACKGROUND: Fetal alcohol spectrum disorder (FASD) is among the leading causes of developmental and intellectual disabilities in individuals. Although efforts are being made toward the prevention and management of FASD in South Africa, the prevalence remains high. The sustained high prevalence could be attributed to several factors, including the lack of policy for a coordinated effort to prevent, diagnose and manage FASD nationally. In this study, our aim was to explore the perspectives of service providers (health and allied professionals, teachers, social workers) on the prevention and management of FASD towards developing a guideline to inform policy. METHOD: Guided by the exploratory qualitative research design, we purposively sampled relevant service providers in the field of FASD prevention and management for focus group discussions. Nine of these discussions were conducted with to eight participants per discussion session. The discussants were asked various questions on the current and required interventions and practices for the prevention and management of FASD. Following the Framework Method, data were transcribed verbatim and analysed using the thematic content analysis approach. RESULTS: Our findings show that aspects of the prevention and management of alcohol-related conditions are present in various policies. However, there is no clear focus on coordinated, multi-sectoral efforts for a more comprehensive approach to the prevention and management of FASD. The participants recognized the need for specific requirements on broad-based preventive awareness programs, training and support for parents and caregivers, inclusive education in mainstream schools and training of relevant professionals. CONCLUSION: Comprehensive and coordinated prevention and management programs guided by a specific policy could improve the prevention and management of FASD. Policy formulation demonstrates commitment from the government, highlights the importance of the condition, and elaborates on context-specific prevention and management protocols.

A modified Delphi study towards developing a guideline to inform policy on fetal alcohol spectrum disorders in South Africa: a study protocol.

INTRODUCTION: Maternal alcohol consumption during pregnancy can result in mental and physical birth defects in individuals. These birth defects are usually described as fetal alcohol spectrum disorders (FASDs). With an estimated 183-259 per 1000 children born with FASDs, South Africa is identified to have the highest prevalence of FASDs in the world. Nevertheless, there is a lack of appropriate policies, guidelines and interventions addressing the issues around FASDs. This protocol outlines a proposed process for developing a guideline to inform policies on FASDs. METHODS AND ANALYSIS: This process will have three phases. Phase I will be carried out in three steps; we plan to conduct a document review of available policies on the prevention and management of FASDs and update the existing systematic review on FASDs interventions. The aim of the two reviews is to explore the availability and content of existing policies and global interventions on FASDs. In addition, we will conduct two exploratory qualitative studies to obtain the perspectives of various stakeholders on the existing or possible guidelines and policies for the management of FASDs and available interventions and services. In phase II, we will aggregate the findings of the previous phase to develop a prototype guideline. In phase III, using the developed prototype, we will apply the Delphi approach with experts on FASDs, soliciting their opinions on the nature and content of the proposed guidelines for policies. The information gathered will be used to modify the prototype to formulate a policy guideline on FASDs. The data will be analysed using thematic analysis and narrative synthesis. ETHICS AND DISSEMINATION: Ethical clearance has been obtained from the ethics committee of the university and governmental departments. The findings will be disseminated through publications and the guideline will be submitted to relevant departments.