Policy Requirements for the Prevention and Management of Fetal Alcohol Spectrum Disorder in South Africa: A Policy Brief (original) (raw)
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A guideline for the prevention and management of Fetal Alcohol Spectrum Disorder in South Africa
BMC Health Service Research, 2019
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.
Health Research Policy and Systems, 2019
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.
International Journal of Mental Health and Addiction, 2021
Fetal alcohol spectrum disorder (FASD) remains one of the leading sources of non-genetic intellectual and developmental disabilities globally. South Africa (SA) could be considered to bear the greatest burden of FASD globally with the recorded prevalence of FASD ranging from 29 to 290 per 1000 live births. Despite several efforts to reduce the incidence and prevalence of FASD in SA, its incidence and prevalence remain high. In this study, we examined the factors behind the sustained high incidence and prevalence of FASD in SA. Using an exploratory qualitative design, we explored the perspectives and experiences of 10 policymakers and 65 service providers on why FASD remains unabated despite various efforts to address the problem in SA. Ten in-depth interviews were conducted with policymakers and nine focus group discussions were conducted with the service providers in the Western Cape Province of SA. Data were analyzed inductively using the thematic analysis approach and emerging themes were deductively classified using the ecological model. Our findings revealed several reasons for the sustained high prevalence and increasing incidence of FASD in SA. At the individual level, late antenatal booking, alcohol consumption during pregnancy, and socioeconomic conditions of individuals were identified as relevant factors driving the FASD prevalence in SA. Inadequate support groups for women were reported at the interpersonal level. The widespread availability of illegal liquor stores and inadequate specialized prevention programs were reported as community-level challenges. At the institutional level, the reasons included inadequate training of professionals and inadequate collaboration between government departments. At the policy level, the absence of a specific policy addressing FASD constitutes a significant barrier to the unabated FASD. The study findings suggest a cascade effect within the different levels of the ecological model highlighting the need for a holistic and systemic approach to preventing FASD in SA. The design and implementation of holistic, human rights-based, and interdepartment policies and programs addressing the social determinants of FASD should be considered.
Fetal alcohol spectrum disorders: Prevalence rates in South Africa
South African Medical Journal, 2016
Background. Fetal alcohol spectrum disorder (FASD) is an under-diagnosed condition in South Africa (SA). Fetal alcohol syndrome and FASD community prevalence studies were undertaken in 17 towns in three of the nine provinces in SA. Objective. The objective for all the studies was to determine the FASD prevalence rates by assessing the grade 1 learners in all the studies, using international FASD diagnostic criteria. Methods. The same methodology was used for all the studies in Gauteng, Western and Northern Cape provinces. Consenting grade 1 learners received anthropometric screening, clinical examinations and neurodevelopmental assessments. Structured interviews were used to assess maternal alcohol consumption during pregnancy. Results. Reported prevalence rates ranged from 29 to 290 per 1 000 live births. Conclusion. FASD rates from studies conducted in SA are among the highest worldwide. FASD affects all communities in SA and is therefore a major public health concern in SA. Multidisciplinary and intersectoral interventions are urgently required to raise awareness about the dangers of prenatal alcohol exposure and the devastating effect of FASD on the lives of children, families and communities.
International journal of environmental research and public health, 2015
In the Western Cape Province of South Africa (ZA) a subculture of binge drinking produces the highest global documented prevalence of fetal alcohol spectrum disorders (FASD). FASD prevention research activities in ZA use the Comprehensive Prevention approach from the United States Institute of Medicine. Case management (CM) was delivered as a method of indicated prevention to empower heavy drinking pregnant women to achieve cessation or a reduction in drinking. CM activities incorporated life management, Motivational Interviewing (MI) techniques and the Community Reinforcement Approach (CRA). Data were collected at baseline, 6, 12 and 18 months. Mean drinking decreases 6 months into CM; but overall alcohol consumption rose significantly over time to levels higher than baseline at 12 and 18 months. Alcohol consumption drops significantly from before pregnancy to the second and third trimesters. AUDIT scores indicate that problematic drinking decreases significantly even after the vul...
BMC Public Health, 2019
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 six 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, mult-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.
Alcohol and Alcoholism, 2012
Aims: Prevalence of fetal alcohol spectrum disorders (FASDs) is remarkably high in several provinces of South Africa; yet population-level knowledge of the harms of maternal drinking remains low. In two heavily affected areas, we assessed effectiveness of interventions to heighten awareness of these harms and to alter social norms about drinking in pregnancy. Methods: FASD prevalence, maternal knowledge and drinking behaviours were investigated in two Northern Cape Province towns, before and after interventions which included highlighting FASD using local media and health promotion talks at health facilities. Independently, two dysmorphologists and a neuropsychometrist examined children at 9 and 18 months. Results: Pre-intervention maternal knowledge of alcohol harms was low and FASD prevalence 8.9% (72/809). Interventions reached high coverage and knowledge levels increased substantially. FASD prevalence was 5.7% post-intervention (43/751; P = 0.02); 0.73 lower odds, controlling for maternal age and ethnicity (95% confidence interval = 0.58-0.90). No change was detected in more severe FASD forms, but in the whole population, median dysmorphology scores reduced from 4 [inter-quartile range (IQR) = 2-7] to 3 (IQR = 1-6; P = 0.002). Conclusion: This, the first prevention study using FASD outcomes, suggests that universal prevention might reduce FASD by~30% and have population-level effects. This supports intensifying universal interventions where knowledge of harms of maternal drinking is low. These efforts need to be accompanied by alcohol-dependence treatment to lower more severe FASD forms.
Drug and alcohol dependence, 2016
The prevalence and characteristics of the continuum of diagnoses within fetal alcohol spectrum disorders (FASD) were researched in a fifth sample in a South African community. An active case ascertainment approach was employed among all first grade learners in this community (n=862). Following individual examination by clinical geneticists/dysmorphologists, cognitive/behavioral testing, and maternal interviews, final diagnoses were made in multidisciplinary case conferences. Physical measurements, cardinal facial features of FAS, and total dysmorphology scores clearly differentiated diagnostic categories in a consistent, linear fashion, from severe to mild. Neurodevelopmental delays and behavioral problems were significantly worse for each of the FASD diagnostic categories, although not as consistently linear across diagnostic groups. Alcohol use was documented by direct report from the mother in 71% to 100% of cases in specific diagnostic groups. Significant distal maternal risk fa...
Int. J. Environ. Res. Public Health, 2019
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.