Abigail Rodin1, Kirstie Fleetwood-Meade2, Jane Gilmour1, Rosco Kasujja3, Tara Murphy1. 1. Great Ormond Street Institute of Child Health, University College London, London, UK. 2. Child and Adolescent Mental Health Services, Avon and Wiltshire Mental Health Partnership NHS Trust, Bristol, UK. 3. Department of Mental Health & Community Psychology, School of Psychology, Makerere University, Kampala, Uganda.
Abstract
BACKGROUND: Tourette syndrome (TS) is reported in all cultures, although is speculated to be rare among those of Sub-Saharan African descent. A lack of research exploring TS in the context of Sub-Saharan Africa has meant that it is not yet established whether this apparent rarity is due to a true low prevalence or if identification of the condition merely is unrecognized. The present study aimed to explore health professionals' knowledge and attitudes of the identification, diagnosis and management of TS in Uganda. METHOD: A mixed-methods design was used to collect data from 152 Ugandan healthcare professionals by survey. Of these, 6 professionals took part in semi-structured interviews. Data gathered were analyzed with descriptive statistics and qualitatively using thematic analysis. RESULTS: Professionals' views and experiences led to conclusions addressing (a) perceived challenges in diagnosing and treating TS in a Ugandan healthcare setting, (b) the role of cultural factors in help-seeking behaviors, and (c) ways by which efforts can be made to build capacity in awareness and clinical care. CONCLUSIONS: The findings suggest that TS is present in Uganda, but a number of factors hinder detection rates causing it to be under-reported in the population. This study highlights the need for more focused and adequate training for all healthcare professionals in Uganda and education campaigns to increase awareness among the general public. KEY PRACTITIONER MESSAGE: Little is currently known about the presentation of or understanding by professionals around Tourette syndrome in Sub-Saharan Africa. This study found health professionals in Uganda indicated a number of factors which interact and negatively impact recognition rates of tic disorders. This included limited training, exposure, and misconceptions, contributing to a lack of clinical awareness and attention. They also reported a lack of help-seeking behaviors due to parental perceptions and Ugandan traditional, cultural and religious beliefs. Professionals perceive that there are likely large numbers of undiagnosed and untreated children with Tourette syndrome in Uganda. This supports existing literature regarding the diagnostic challenges of neurodevelopmental disorders in Africa and provides an alternative explanation for the assumption that tic disorders may be rare and possible absent in Sub-Saharan Africa. There is a need to develop adequate training regarding tic disorders for all healthcare professionals working in Uganda as well as education campaigns for the general public to increase awareness.
BACKGROUND:Tourette syndrome (TS) is reported in all cultures, although is speculated to be rare among those of Sub-Saharan African descent. A lack of research exploring TS in the context of Sub-Saharan Africa has meant that it is not yet established whether this apparent rarity is due to a true low prevalence or if identification of the condition merely is unrecognized. The present study aimed to explore health professionals' knowledge and attitudes of the identification, diagnosis and management of TS in Uganda. METHOD: A mixed-methods design was used to collect data from 152 Ugandan healthcare professionals by survey. Of these, 6 professionals took part in semi-structured interviews. Data gathered were analyzed with descriptive statistics and qualitatively using thematic analysis. RESULTS: Professionals' views and experiences led to conclusions addressing (a) perceived challenges in diagnosing and treating TS in a Ugandan healthcare setting, (b) the role of cultural factors in help-seeking behaviors, and (c) ways by which efforts can be made to build capacity in awareness and clinical care. CONCLUSIONS: The findings suggest that TS is present in Uganda, but a number of factors hinder detection rates causing it to be under-reported in the population. This study highlights the need for more focused and adequate training for all healthcare professionals in Uganda and education campaigns to increase awareness among the general public. KEY PRACTITIONER MESSAGE: Little is currently known about the presentation of or understanding by professionals around Tourette syndrome in Sub-Saharan Africa. This study found health professionals in Uganda indicated a number of factors which interact and negatively impact recognition rates of tic disorders. This included limited training, exposure, and misconceptions, contributing to a lack of clinical awareness and attention. They also reported a lack of help-seeking behaviors due to parental perceptions and Ugandan traditional, cultural and religious beliefs. Professionals perceive that there are likely large numbers of undiagnosed and untreated children with Tourette syndrome in Uganda. This supports existing literature regarding the diagnostic challenges of neurodevelopmental disorders in Africa and provides an alternative explanation for the assumption that tic disorders may be rare and possible absent in Sub-Saharan Africa. There is a need to develop adequate training regarding tic disorders for all healthcare professionals working in Uganda as well as education campaigns for the general public to increase awareness.