Lived experiences of caregivers of children with autism spectrum disorder in Kenya

Background: Autism spectrum disorder (ASD) is a global public health concern. In African countries such as Kenya, there is a greater need for establishing support services for developmental disorders such as ASD. The emotional, social and economic burden of ASD on caregivers is unknown because of a number of challenges. Citizens of Kenya have a unique view of disability and inclusion. Objectives: To explore the perspectives of caregivers who are responsible for caring for both family and children living with ASD and to highlight the needs of children with ASD as well as the needs of their caregivers. Method: A qualitative, descriptive phenomenological study utilising focus group discussions (FGDs) was conducted. Verbatim transcription was used. QSR N ’Vivo 10 was used to organise and analyse the data. Content analysis was used to identify important ideas and concepts. Results: One theme, namely ‘the burden of caring for children with ASD’, was identified. Children with ASD and their caregivers experience isolation and stigmatisation. Conclusion: Occupational therapists in Kenya should collaborate with the relevant national and global stakeholders for the promotion of the inclusion of children with ASD and their families. Responsive and context-appropriate occupational therapy interventions may begin to address service barriers

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

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.IS