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BACKGROUND: Emerging evidence suggests that positive impacts can be generated when digital health interventions are designed to be responsive to the cultural and socioeconomic context of their intended audiences. OBJECTIVE: This narrative review aims to synthesize the literature about the cultural adaptation of digital health interventions. It examines how concepts of culture and context feature in design and development processes, including the methods, models, and content of these interventions, with the aim of helping researchers to make informed decisions about how to approach cultural adaptation in digital health. METHODS: Literature searches for this narrative review were conducted across 4 databases. Following full-text article screening by 2 authors, 16 studies of interventions predominantly focused on the self-management of health were selected based on their detailed focus on the process of cultural adaptation. Key considerations for cultural adaptation were identified and synthesized through a qualitative narrative approach, enabling an integrative and in-depth understanding of cultural adaptation. RESULTS: The literature demonstrates varying approaches and levels of cultural adaptation across stages of intervention development, involving considerations such as the research ethos orienting researchers, the methodologies and models used, and the resultant content adaptations. In relation to the latter, culturally appropriate and accessible user interface design and translation can be seen as particularly important in shaping the level of adaptation. CONCLUSIONS: Optimizing cultural adaptation involves linking culture with other contextual factors such as economic conditions and social systems to ensure accessibility and the sustained use of digital health interventions. Culturally humble approaches that use the involvement of a broad range of participants, experts, and other stakeholders are demonstrated to spark vital insights for content development, implementation, and evaluation.
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Telemedicina , Humanos , Salud DigitalRESUMEN
Objective: The Thrive by Five app promotes positive interactions between children and parents, extended family, and trusted community members that support optimal socio-emotional and cognitive development in the early years. This article aims to describe the protocol for a prospective mixed-methods multi-site study evaluating Thrive by Five using surveys, interviews, workshops, audio diaries from citizen ethnographers and app usage data. Methods: The study activities and timelines differ by site, with an extensive longitudinal evaluation being conducted at two sites and a basic evaluation being conducted at five sites. The learnings from the more comprehensive evaluations inform the iterative research and development processes while also ensuring ongoing evaluation of usability, acceptability and effectiveness of the app and its content across varying contexts. The study evaluates: (1) the impact of the Thrive by Five content on caregiver knowledge, behaviours, attitudes and confidence; (2) how the content changes relationships at the familial, community and system level; (3) how cultural and contextual factors influence content engagement and effectiveness and (4) the processes that facilitate or disrupt the success of the implementation and dissemination. Results: All in-country partners have been identified and data collection has been completed in Indonesia, Malaysia, Afghanistan, Kyrgyzstan, Uzbekistan, Namibia and Cameroon. Conclusions: Very few digital health solutions have been trialled for usability and effectiveness in diverse cultural contexts. By combining quantitative, qualitative, process and ethnographic methodologies, this innovative study informs the iterative and ongoing optimisation of the cultural and contextual sensitivity of the Thrive by Five content and the processes supporting implementation and dissemination.
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BACKGROUND: Digital technology is a means to uphold or violate human rights in various domains, including business, military, and health. Given the pervasiveness of mobile technology in low- and middle-income countries (LMICs), mobile health (mHealth) interventions present an opportunity to reach remote populations and enable them to exercise civil and political rights and economic, social, and cultural rights, such as the right to health and education. Simultaneously, the ubiquity of mobile phones involves processing sensitive data which can threaten rights, including the right to privacy and nondiscrimination. Digital health is often promoted as advancing human rights and health equity; however, digital rights are underexplored in the literature on mHealth in LMICs. As such, creating an understanding of the digital rights topics covered in the 2022 literature is important to avoid exacerbating existing inequities relating to digital health design, use, implementation, and access. OBJECTIVE: This scoping review aims to identify digital rights topics in the 2022 peer-reviewed literature on mHealth in LMICs. METHODS: The Arksey and O'Malley framework for scoping reviews guides this review. Searches were performed across 7 electronic databases (Web of Science, Scopus, Ovid, ACM Digital Library, IEEE Xplore, ProQuest, and PubMed). The screening processes were guided by the research question "What digital rights topics have been explored in the 2022 literature on mHealth in LMICs?" Only papers addressing mHealth in LMICs and digital rights topics were included. Data extraction will include publication title, year, and type; first author's affiliation country; LMICs implicated; infrastructure challenges; study aims, design, limitations, and future work; health area; mHealth technology, functions, purpose or application, and target end users; human or digital right terms used; explicit rights topics cited; and implied rights topics. The results will be reported using the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) checklist. RESULTS: This scoping review was registered in Open Science Framework (December 22, 2022). Title and abstract screening and full-text paper screening were completed in 2023. This resulted in 56 papers being included in the study. The target date for completing data extraction and publishing a case study of the initial findings is the end of 2023. The full scoping review findings are expected to be disseminated through various pathways benefiting academia, practice, and policy making by the end of 2024. These include journal papers, conference presentations, publicly available toolkits for research and practice, public webinars, and policy briefs with evidence-based policy recommendations emerging from this review. CONCLUSIONS: The planned scoping review will identify digital rights topics in the 2022 literature at the intersection of mHealth and LMICs. Furthermore, it will highlight the importance of patient empowerment, data protection, and inclusion in mHealth research and related policies in LMICs. TRIAL REGISTRATION: Open Science Framework osf.io/7mz24; https://osf.io/7mz24. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/49150.
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OBJECTIVE: Many children in low-income and middle-income countries are disadvantaged in achieving early developmental potential in childhood as they lack the necessary support from their surroundings, including from parents and caregivers. Digital technologies, such as smartphone apps, coupled with iterative codesign to engage end-users in the technology-delivered content development stages, can help overcome gaps in early child development (ECD). We describe the iterative codesign and quality improvement process that informs the development of content for the Thrive by Five International Program, localised for nine countries in Asia and Africa. DESIGN: Between 2021 and 2022, an average of six codesign workshops in each country were conducted in Afghanistan, Indonesia, Kyrgyzstan, Uzbekistan, Cameroon, the Democratic Republic of the Congo, Ethiopia, Kenya and Namibia.ParticipantsA total of 174 parents and caregivers and 58 in-country subject matter experts participated and provided feedback to refine and inform the cultural appropriateness of the Thrive by Five app and its content. Detailed notes from the workshops and written feedback were coded and analysed using established thematic techniques. RESULTS: Four themes emerged from the codesign workshops: local realities, barriers to positive parenting, child development and lessons learnt about the cultural context. These themes, as well as various subthemes, informed content development and refinement. For example, childrearing activities were requested and developed to promote inclusion of families from diverse backgrounds, encourage best parenting practices, increase engagement of fathers in ECD, address parents' mental well-being, educate children about cultural values and help bereaved children with grief and loss. Also, content that did not align with the laws or culture of any country were removed. CONCLUSIONS: The iterative codesign process informed the development of a culturally relevant app for parents and caregivers of children in the early years. Further evaluation is required to assess user experience and impact in real world settings.
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Aplicaciones Móviles , Responsabilidad Parental , Niño , Humanos , Preescolar , Responsabilidad Parental/psicología , Países en Desarrollo , Cognición , CamerúnRESUMEN
BACKGROUND: Optimal child-rearing practices can help mitigate the consequences of detrimental social determinants of health in early childhood. Given the ubiquity of personal digital technologies worldwide, the direct delivery of evidence-based information about early childhood development holds great promise. However, to make the content of these novel systems effective, it is crucial to incorporate place-based cultural beliefs, traditions, circumstances, and value systems of end users. OBJECTIVE: This paper describes the iterative approach used to develop the Thrive by Five child-rearing app in collaboration with Afghan parents, caregivers (eg, grandparents, aunts, and nannies), and subject matter experts (SMEs). We outline how co-design methodologies informed the development and cultural contextualization of content to meet the specific needs of Afghan parents and the content was tested and refined in collaboration with key Afghan stakeholders. METHODS: The preliminary content was developed based on a comprehensive literature review of the historical and sociocultural contexts in Afghanistan, including factors that influence child-rearing practices and early childhood development. After an initial review and refinement based on feedback from SMEs, this content was populated into a beta app for testing. Overall, 8 co-design workshops were conducted in July and August 2021 and February 2022 with 39 Afghan parents and caregivers and 6 SMEs to collect their feedback on the app and its content. The workshops were audio recorded and transcribed; detailed field notes were taken by 2 scribes. A theoretical thematic analysis using semantic codes was conducted to inform the refinement of existing content and development of new content to fulfill the needs identified by participants. RESULTS: The following 4 primary themes were identified: child-rearing in the Afghan sociocultural context, safety concerns, emotion and behavior management, and physical health and nutrition. Overall, participants agreed that the app had the potential to deliver valuable information to Afghan parents; however, owing to the volatility in the country, participants recommended including more activities that could be safely done indoors, as mothers and children are required to spend most of their time at home. Additionally, restrictions on public engagement in music required the removal of activities referencing singing that might be performed outside the home. Further, activities to help parents reduce their children's screen time, promote empathy, manage emotions, regulate behavior, and improve physical health and nutrition were requested. CONCLUSIONS: Direct engagement with Afghan parents, caregivers, and SMEs through co-design workshops enabled the development and refinement of evidence-based, localized, and contextually relevant child-rearing activities promoting healthy social, emotional, and cognitive development during the first 5 years of children's lives. Importantly, the content was adapted for the ongoing conflict in Afghanistan with the aim of empowering Afghan parents and caregivers to support their children's developmental potential despite the security concerns and situational stressors.
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BACKGROUND: Digital technologies are widely recognized for their equalizing effect, improving access to affordable health care regardless of gender, ethnicity, socioeconomic status, or geographic region. The Thrive by Five app is designed to promote positive interactions between children and their parents, extended family, and trusted members of the community to support socioemotional and cognitive development in the first 5 years of life and to strengthen connections to culture and community. OBJECTIVE: This paper aims to describe the iterative co-design process that underpins the development and refinement of Thrive by Five's features, functions, and content. Minderoo Foundation commissioned this work as a quality improvement activity to support an engaging user experience and inform the development of culturally appropriate and relevant content for parents and caregivers in each country where the app is implemented. METHODS: The app content, referred to as Collective Actions, comprises "The Why," that presents scientific principles that underpin socioemotional and cognitive development in early childhood. The scientific information is coupled with childrearing activities for parents, extended family, and members of the community to engage in with the children to support their healthy development and to promote positive connections between parents, families, and communities and these young children. Importantly, the initial content is designed and iteratively refined in collaboration with a subject matter expert group from each country (ie, alpha testing). This content is then configured into the app (either a beta version or localized version) for testing (ie, beta testing) by local parents and caregivers as well as experts who are invited to provide their feedback and suggestions for improvements in app content, features, and functions via a brief web-based survey and a series of co-design workshops. The quantitative survey data will be analyzed using descriptive statistics, whereas the analysis of qualitative data from the workshops will follow established thematic techniques. RESULTS: To date, the co-design protocol has been completed with subject matter experts, parents, and caregivers from 9 countries, with the first results expected to be published by early 2023. The protocol will be implemented serially in the remaining 21 countries. CONCLUSIONS: Mobile technologies are the primary means of internet connection in many countries worldwide, which underscores the potential for mobile health programs to improve access to valuable, evidence-based, and previously unavailable parenting information. However, for maximum impact, it is critically important to ensure that mobile health programs are designed in collaboration with the target audience to support the alignment of content with parents' cultural values and traditions and its relevance to their needs and circumstances. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/39225.
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There is an increasing interest in using magnetic resonance imaging (MRI) as a tool for precision medicine in autism spectrum disorder (ASD). This study investigated the feasibility of MRI scanning in a large comprehensive, inclusive and test heavy clinical trial for children (aged 3-12 years) with ASD, without functioning constraints for participation. Of the 71 participants enrolled who consented to the MRI, 24 participants (38%) successfully completed an MRI scan at baseline along with other assessments. This scanning followed a familiarization procedure at two preceding visits. At post-treatment, 21 participants successfully completed the MRI scan. This study highlights the challenge of completing MRI assessments in ASD populations when conducted as one of a number of tests in a clinical trial.
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Trastorno del Espectro Autista , Trastorno del Espectro Autista/diagnóstico por imagen , Encéfalo , Niño , Preescolar , Estudios de Factibilidad , Humanos , Imagen por Resonancia Magnética/métodosRESUMEN
Differential diagnosis in adult cohorts with social difficulty is confounded by comorbid mental health conditions, common etiologies, and shared phenotypes. Identifying shared and discriminating profiles can facilitate intervention and remediation strategies. The objective of the study was to identify salient features of a composite test battery of cognitive and mood measures using a machine learning paradigm in clinical cohorts with social interaction difficulties. We recruited clinical participants who met standardized diagnostic criteria for autism spectrum disorder (ASD: n = 62), early psychosis (EP: n = 48), or social anxiety disorder (SAD: N = 83) and compared them with a neurotypical comparison group (TYP: N = 43). Using five machine-learning algorithms and repeated cross-validation, we trained and tested classification models using measures of cognitive and executive function, lower- and higher-order social cognition and mood severity. Performance metrics were the area under the curve (AUC) and Brier Scores. Sixteen features successfully differentiated between the groups. The control versus social impairment cohorts (ASD, EP, SAD) were differentiated by social cognition, visuospatial memory and mood measures. Importantly, a distinct profile cluster drawn from social cognition, visual learning, executive function and mood, distinguished the neurodevelopmental cohort (EP and ASD) from the SAD group. The mean AUC range was between 0.891 and 0.916 for social impairment versus control cohorts and, 0.729 to 0.781 for SAD vs neurodevelopmental cohorts. This is the first study that compares an extensive battery of neuropsychological and self-report measures using a machine learning protocol in clinical and neurodevelopmental cohorts characterized by social impairment. Findings are relevant for diagnostic, intervention and remediation strategies for these groups.
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Social functioning is an important component of mental disorders for assessment and treatment. There is no recognised self-report instrument to measure social functioning across disorders where social impairment is significant. The Social Functioning Scale (SFS) has, however, been used to assess social functioning in psychotic disorders, including Schizophrenia and Early Psychosis. The current study investigated the reliability, validity and sensitivity of the SFS in Early Psychosis, Autism Spectrum Disorder (ASD), Social Anxiety Disorder (SAD) and neurotypical control populations. As expected, all clinical groups showed significant impairment on the total and sub-scale scores of the SFS. The SFS showed good internal consistency and concurrent validity for people diagnosed with SAD and Early Psychosis and a similar factors structure was found for these groups. Participants with ASD reported a relatively low internal consistency and poor concurrent validity, as well as a three-component solution. The SFS has also showed a good sensitivity to separate clinical populations and neurotypical controls. This study supports the use of the SFS for those with SAD and Early Psychosis. Lower internal consistency in ASD populations suggests further research in larger samples is required and that the relationship between its scales are likely different to other populations. Alternative scales or significant other reports may be required for adults with ASD.