Perspectives on Children’s Autistic Traits in UK-based British and Egyptian/Sudanese Communities

Background: While most autism research is conducted in White Western samples, culture may affect perceptions and reporting of autistic traits. We explored how UK-based British and Egyptian/Sudanese communities perceive autism features. Methods and Procedures: Nineteen participants self-identifying as British and 20 as Egyptian/Sudanese participated in focus group discussions on child development norms, and individual interviews on items of the Autism-spectrum Quotient: Children’s version (AQ-Child; Auyeung et al., 2007), measuring autistic traits. Data were analysed using template analysis. Outcomes and Results: Three themes were developed: 1) Value judgements of behaviours; 2) Considerations on differences between children; 3) Problematic interpretations of AQ-Child items. These processes may affect how parents and community members report on children’s autistic traits. Cross-cultural comparisons suggested subtle differences in interpretations and judgements, and British participants referred to age expectations and comparisons with other children more than Egyptian/Sudanese participants. However, within-group variability, sometimes attributed to socioeconomic status and generation, appeared larger than cross-cultural differences. Conclusions and Implications: Our findings further the insights on influence of culture and within-community factors on reporting children’s behaviour relevant to autism. These can inform the adaptation of screening tools in multi-cultural settings, to promote better autism recognition in communities where it may be underdiagnosed

Perspectives on Children’s Autistic Traits in UK-based British and Egyptian/Sudanese Communities

Background: While most autism research is conducted in White Western samples, culture may affect perceptions and reporting of autistic traits. We explored how UK-based British and Egyptian/Sudanese communities perceive autism features. Methods and Procedures: Nineteen participants self-identifying as British and 20 as Egyptian/Sudanese participated in focus group discussions on child development norms, and individual interviews on items of the Autism-spectrum Quotient: Children’s version (AQ-Child; Auyeung et al., 2007), measuring autistic traits. Data were analysed using template analysis. Outcomes and Results: Three themes were developed: 1) Value judgements of behaviours; 2) Considerations on differences between children; 3) Problematic interpretations of AQ-Child items. These processes may affect how parents and community members report on children’s autistic traits. Cross-cultural comparisons suggested subtle differences in interpretations and judgements, and British participants referred to age expectations and comparisons with other children more than Egyptian/Sudanese participants. However, within-group variability, sometimes attributed to socioeconomic status and generation, appeared larger than cross-cultural differences. Conclusions and Implications: Our findings further the insights on influence of culture and within-community factors on reporting children’s behaviour relevant to autism. These can inform the adaptation of screening tools in multi-cultural settings, to promote better autism recognition in communities where it may be underdiagnosed

Adaptation of the Wound Healing Questionnaire universal-reporter outcome measure for use in global surgery trials (TALON-1 study): mixed-methods study and Rasch analysis

BackgroundThe Bluebelle Wound Healing Questionnaire (WHQ) is a universal-reporter outcome measure developed in the UK for remote detection of surgical-site infection after abdominal surgery. This study aimed to explore cross-cultural equivalence, acceptability, and content validity of the WHQ for use across low- and middle-income countries, and to make recommendations for its adaptation.MethodsThis was a mixed-methods study within a trial (SWAT) embedded in an international randomized trial, conducted according to best practice guidelines, and co-produced with community and patient partners (TALON-1). Structured interviews and focus groups were used to gather data regarding cross-cultural, cross-contextual equivalence of the individual items and scale, and conduct a translatability assessment. Translation was completed into five languages in accordance with Mapi recommendations. Next, data from a prospective cohort (SWAT) were interpreted using Rasch analysis to explore scaling and measurement properties of the WHQ. Finally, qualitative and quantitative data were triangulated using a modified, exploratory, instrumental design model.ResultsIn the qualitative phase, 10 structured interviews and six focus groups took place with a total of 47 investigators across six countries. Themes related to comprehension, response mapping, retrieval, and judgement were identified with rich cross-cultural insights. In the quantitative phase, an exploratory Rasch model was fitted to data from 537 patients (369 excluding extremes). Owing to the number of extreme (floor) values, the overall level of power was low. The single WHQ scale satisfied tests of unidimensionality, indicating validity of the ordinal total WHQ score. There was significant overall model misfit of five items (5, 9, 14, 15, 16) and local dependency in 11 item pairs. The person separation index was estimated as 0.48 suggesting weak discrimination between classes, whereas Cronbach's α was high at 0.86. Triangulation of qualitative data with the Rasch analysis supported recommendations for cross-cultural adaptation of the WHQ items 1 (redness), 3 (clear fluid), 7 (deep wound opening), 10 (pain), 11 (fever), 15 (antibiotics), 16 (debridement), 18 (drainage), and 19 (reoperation). Changes to three item response categories (1, not at all; 2, a little; 3, a lot) were adopted for symptom items 1 to 10, and two categories (0, no; 1, yes) for item 11 (fever).ConclusionThis study made recommendations for cross-cultural adaptation of the WHQ for use in global surgical research and practice, using co-produced mixed-methods data from three continents. Translations are now available for implementation into remote wound assessment pathways