The role of advocacy and empowerment in shaping service development for families raising children with developmental disabilities

Introduction: Empowerment of families raising children with developmental disabilities (DDs) is essential to achieving rights-based service development. Methods: In this qualitative study, we investigated stakeholder perceptions on the role of advocacy and empowerment in developing caregiver interventions for families of children with DDs in a global context. Participants had experience with at least one intervention, namely the Caregiver Skills Training developed by the World Health Organization (WHO). Participants were clinicians, caregivers and researchers representing five continents, and representatives of WHO and Autism Speaks. Two focus group discussions and 25 individual interviews were conducted. Data were analysed thematically. Results: Three themes were developed: empowerment as independence and as a right; the role and practices of advocacy; and using evidence to drive advocacy. Many professional participants defined empowerment within the realms of their expertise, focusing on caregivers' individual skills and self-confidence. Caregivers expressed that this expert-oriented view fails to acknowledge their intuitive knowledge and the need for community-level empowerment. Participants discussed the challenges of advocacy in light of competing health priorities. The gap between the rights of caregivers and the availability of services, for example, evidence-based interventions, was highlighted as problematic. Scientific evidence was identified as a key for advocacy. Conclusion: Rights-orientated empowerment of caregivers and advocacy may make vital contributions to service development for children with DDs in contexts worldwide. Patient and Public Contribution: Research questions were revised based on views presented during focus group discussions. Participant feedback on preliminary themes informed the development of the interview guides

The experiences of parents raising children with developmental disabilities in Ethiopia

The experiences of parents raising children with developmental disabilities have been widely researched, although most of this research comes from Western, high-income countries. In comparison, little is known about the lived experiences of parents of children with developmental disabilities in low- and middle-income countries and in Africa in particular. Parents’ lived experiences can provide insights into local conceptualizations of developmental disabilities, challenges children and their families face and their needs. This study explores the experiences of parents (14 mothers and 4 fathers) raising children with developmental disabilities in urban and rural Ethiopia using in-depth interviews. Cultural and religious beliefs played a role in the types of delays or differences in their child’s development that parents noticed early and the kinds of support they sought. Parents experienced stigma and lack of understanding from others. Their experiences regarding some of the challenges they faced such as lack of appropriate services varied based on where they lived (urban or rural). Single mothers especially were faced with multiple and intersecting struggles including poverty, stigma, and lack of social support. Implications for future research and interventions that aim to increase knowledge about developmental disabilities, tackle stigma and improve the lives of children and their families are discussed. Lay abstract: The experiences of parents raising children with developmental disabilities have been widely researched, although most of this research comes from Western, high-income countries. In comparison, little is known about the lived experiences of parents of children with developmental disabilities in low- and middle-income countries and in Africa in particular. We interviewed 14 mothers and 4 fathers in Addis Ababa and the rural town of Butajira to explore what life is like for parents caring for children with developmental disabilities in Ethiopia. Cultural and religious beliefs played a role in the types of delays or differences in their child’s development that parents noticed early and the kinds of support they sought. Parents experienced stigma and lack of understanding from others. Their experiences regarding some of the challenges they faced such as lack of appropriate services varied based on where they lived (urban or rural). Single mothers especially were faced with multiple struggles including poverty, stigma, and lack of social support. Implications for future research and interventions that aim to increase knowledge about developmental disabilities, tackle stigma and improve the lives of children and their families are discussed

Exploring contextual adaptations in caregiver interventions for families raising children with developmental disabilities

There are increasing efforts to scale up services globally for families raising children with developmental disabilities (DDs). Existing interventions, often developed in high income, Western settings, need substantial adaptation before they can be implemented in different contexts.The aim of this study was to explore perspectives on the role that context plays in the adaptation and implementation of interventions targeting caregivers of children with DDs across settings. The study question was applied to the Caregiver Skills Training (CST) programme of the World Health Organization specifically, as well as to stakeholder experiences with caregiver interventions more broadly. Two focus group discussions (FGDs; n=15 participants) and 25 individual semi-structured interviews were conducted. Participants were caregivers of children with DDs and professionals involved in adapting or implementing the CST across five continents and different income settings. Data were analysed thematically.Four main themes were developed: 1) Setting the scene for adaptations; 2) Integrating an intervention into local public services; 3) Understanding the reality of caregivers; 4) Challenges of sustaining an intervention. Informants thought that contextual adaptations were key for the intervention to fit in locally, even more so than cultural factors. The socio-economic context of caregivers, including poverty, was highlighted as heavily affecting service access and engagement with the intervention. Competing health priorities other than DDs, financial constraints, and management of long-term collaborations were identified as barriers. This study validates the notion that attention to contextual factors is an essential part of the adaptation of caregiver interventions for children with DDs, by providing perspectives from different geographical regions. We recommend a stronger policy and research focus on contextual adaptations of interventions and addressing unmet socio-economic needs of caregivers.

Mapping Awareness-Raising and Capacity-Building Materials on Developmental Disabilities for Non-Specialists: a Review of the Academic and Grey Literature

Most children with developmental disabilities (DD), such as intellectual disabilities and autism, live in low- and middle-income countries (LMICs), where services are usually limited. Various governmental, non-governmental and research organisations in LMICs have developed awareness-raising campaigns and training and education resources on DD in childhood relevant to LMICs. This study aimed to comprehensively search and review freely available materials in the academic and grey literature, aimed at awareness raising, training and education on DD among non-specialist professionals and community members in LMICs. We consulted 183 experts, conducted key-word searches in five academic databases, four grey-literature databases and seventeen customised Google search engines. Following initial screening, we manually searched relevant systematic reviews and lists of resources and conducted forwards and backwards citation checks of included articles. We identified 7327 articles and resources after deduplication. We then used a rigorous multi-step screening process to select 78 training resources on DD relevant to LMICs, of which 43 aimed at informing and/or raising awareness DD, 16 highlighted specific strategies for staff in health settings and 19 in education settings. Our mapping analysis revealed that a wealth of materials is available for both global and local use, including comics, children’s books, flyers, posters, fact sheets, blogs, videos, websites pages, social media channels, handbooks and self-education guides, and training programmes or sessions. Twelve resources were developed for cross-continental or global use in LMICs, 19 were developed for and/or used in Africa, 23 in Asia, 24 in Latin America. Most resources were developed within the context where they were intended to be used. Identified gaps included a limited range of resources on intellectual disabilities, manuals for actively delivering training to staff in education settings and resources targeted at eastern European LMICs: future intervention development and adaptation efforts should address such gaps, to ensure capacity building materials exist for a sufficient variety of DD, settings and geographical areas. Beyond identifying these gaps, the value of the review lies in the compilation of summary tables of information on all freely available resources found, to support their selection and use in wider contexts. Information on the resource content, country of original development and copyright is provided to facilitate resource sharing and uptake

Mapping Awareness-Raising and Capacity-Building Materials on Developmental Disabilities for Non-Specialists: a Review of the Academic and Grey Literature

Most children with developmental disabilities (DD), such as intellectual disabilities and autism, live in low- and middle-income countries (LMICs), where services are usually limited. Various governmental, non-governmental and research organisations in LMICs have developed awareness-raising campaigns and training and education resources on DD in childhood relevant to LMICs. This study aimed to comprehensively search and review freely available materials in the academic and grey literature, aimed at awareness raising, training and education on DD among non-specialist professionals and community members in LMICs. We consulted 183 experts, conducted key-word searches in five academic databases, four grey-literature databases and seventeen customised Google search engines. Following initial screening, we manually searched relevant systematic reviews and lists of resources and conducted forwards and backwards citation checks of included articles. We identified 7327 articles and resources after deduplication. We then used a rigorous multi-step screening process to select 78 training resources on DD relevant to LMICs, of which 43 aimed at informing and/or raising awareness DD, 16 highlighted specific strategies for staff in health settings and 19 in education settings. Our mapping analysis revealed that a wealth of materials is available for both global and local use, including comics, children’s books, flyers, posters, fact sheets, blogs, videos, websites pages, social media channels, handbooks and self-education guides, and training programmes or sessions. Twelve resources were developed for cross-continental or global use in LMICs, 19 were developed for and/or used in Africa, 23 in Asia, 24 in Latin America. Most resources were developed within the context where they were intended to be used. Identified gaps included a limited range of resources on intellectual disabilities, manuals for actively delivering training to staff in education settings and resources targeted at eastern European LMICs: future intervention development and adaptation efforts should address such gaps, to ensure capacity building materials exist for a sufficient variety of DD, settings and geographical areas. Beyond identifying these gaps, the value of the review lies in the compilation of summary tables of information on all freely available resources found, to support their selection and use in wider contexts. Information on the resource content, country of original development and copyright is provided to facilitate resource sharing and uptake.</p

Validation of the Communication Profile-Adapted in Ethiopian Children with Neurodevelopmental Disorders

BACKGROUND: Neurodevelopmental disorders (NDDs) are conditions affecting a child's cognitive, behavioural, and emotional development. Appropriate and validated outcome measures for use in children with NDDs in sub-Saharan Africa are scarce. The aim of this study was to validate the Communication Profile Adapted (CP-A), a measure developed in East Africa to assess caregivers' perception of communication among children with NDDs. METHODS: We adapted the CP-A for use in Ethiopia, focusing on the communicative mode (CP-A-mode) and function (CP-A-function) scales. The CP-A was administered to a representative sample of caregivers of children with NDDs and clinical controls. We performed an exploratory factor analysis and determined the internal consistency, test-retest reliability, within-scale, known-group, and convergent validity of the identified factors. RESULTS: Our analysis included N = 300 participants (N = 139 cases, N = 139 clinical controls, N = 22 who did not meet criteria for either cases or controls). Within the CP-A-mode, we identified two factors (i.e. verbal and physical communication); the CP-A-function scale was unidimensional. Combining both scales into one summary variable (the CP-A-total) resulted in a scale with excellent internal consistency and test-retest reliability (Cronbach's alpha = 0.97; Kappa = 0.60–0.95, p < 0.001; ICC = 0.97, p < 0.001). Testing known-group validity, the CP-A-total scores were significantly higher for controls than cases (Δ mean = 33.93, p < 0.001). Convergent validity assessment indicated that scores were negatively and moderately correlated with clinical severity (ρ = −0.25, p = 0.04). CONCLUSION: The CP-A is a valid tool for the assessment of communication among children with NDDs in Ethiopia. It holds promise as a brief, quantitative, and culturally appropriate outcome measure for use in sub-Saharan Africa

Adaptation and validation of two autism-related measures of skills and quality of life

Although most children with autism and other neurodevelopmental disorders live in low- and middle-income countries, assessment tools are lacking in these settings. This study aims to culturally adapt and validate two questionnaires for use in Ethiopia: the Autism Treatment Evaluation Checklist and the Pediatric Quality of Life Inventory™ Family Impact Module. Both questionnaires were adapted to be suitable for administration in low-literate caregivers and translated using the backward translation procedure. The factor structure, reliability and validity were investigated using caregiver-reports on 300 children with neurodevelopmental disorders or physical health conditions. Confirmatory factor analysis of the Pediatric Quality of Life Inventory™ Family Impact Module data indicated an acceptable fit of the hypothesised eight-factor structure. Internal consistency was high for both measures. Test–retest reliability was excellent for the Autism Treatment Evaluation Checklist and moderate to excellent for the Pediatric Quality of Life Inventory™ Family Impact Module. Both questionnaires demonstrated adequate known-group validity, with moderate to very large effect size group differences between case and control groups. The questionnaires correlated moderately with each other. In conclusion, the Ethiopian adaptations of the Autism Treatment Evaluation Checklist and the Pediatric Quality of Life Inventory™ Family Impact Module are valid and reliable tools for use in parents of children with neurodevelopmental disorders including autism. These adapted measures may also be valuable for use in other low-income settings. Lay abstract: Although most children with autism and other neurodevelopmental disorders live in low- and middle-income countries, reliable tools to assess these conditions are often not available in these settings. In this study, we adapted two questionnaires developed in Western high-income contexts for use in Ethiopia – the Autism Treatment Evaluation Checklist and the Pediatric Quality of Life Inventory™ Family Impact Module. Both measures are completed by a child’s caregiver and both are relatively short and easy to complete. The Autism Treatment Evaluation Checklist is used to monitor the developmental issues of the child, while the Pediatric Quality of Life Inventory™ Family Impact Module measures the impact of the child’s condition on the caregiver. We translated both tools into the Ethiopian language Amharic, and adapted them to the local cultural context. Three hundred caregivers, half of whom were parents of children with neurodevelopmental disorders, and half were parents of children with physical health problems, completed the questionnaires through a face-to face interview, so that non-literate caregivers could also take part. Both tools performed adequately, measured what we aimed to measure and were reliable. Both the Autism Treatment Evaluation Checklist and Pediatric Quality of Life Inventory™ are suitable tools to assess children with developmental and other health problems in Ethiopia and their caregivers. We believe that more similar tools should be developed or adapted for use in low-income countries like Ethiopia, to gain a better understanding of developmental problems in those settings, and allowing clinicians and service providers to use these tools in their practice. Moreover, these tools can be used in future studies to evaluate interventions to improve support for families

Pathways into and out of homelessness among people with severe mental illness in rural Ethiopia: a qualitative study

Background Little is known about the pathways followed into and out of homelessness among people with experience of severe mental illness (SMI) living in rural, low-income country settings. Understanding these pathways is essential for the development of effective interventions to address homelessness and promote recovery. The aim of this study was to explore pathways into and out of homelessness in people with SMI in rural Ethiopia. Methods In-depth interviews were conducted with 15 people with SMI who had experienced homelessness and 11 caregivers. Study participants were identified through their participation in the PRIME project, which implemented a multi-component district level plan to improve access to mental health care in primary care in Sodo district, Ethiopia. People enrolled in PRIME who were diagnosed with SMI (schizophrenia, schizoaffective disorder or bipolar disorder) and who had reported experiencing homelessness at recruitment formed the sampling frame for this qualitative study. We used OpenCode 4.0 and Microsoft Excel for data management. Thematic analysis was conducted using an inductive approach. Results Study participants reported different patterns of homelessness, with some having experienced chronic and others an intermittent course. Periods of homelessness occurred when family resources were overwhelmed or not meeting the needs of the person with SMI. The most important pathways into homelessness were reported to result from family conflict and the worsening of mental ill health, interplaying with substance use in many cases. Participants also mentioned escape and/or wanting a change in environment, financial problems, and discrimination from the community as contributing to them leaving the home. Pathways out of homelessness included contact with (mental and physical) health care as a catalyst to the mobilization of other supports, family and community intervention, and self-initiated return. Conclusions Homelessness in people with SMI in this rural setting reflected complex health and social needs that were not matched by adequate care and support. Our study findings indicate that interventions to prevent and tackle homelessness in this and similar settings ought to focus on increasing family support, and ensuring access to acceptable and suitable housing, mental health care and social support

Scaling up integrated primary mental health in six low- and middle-income countries: obstacles, synergies and implications for systems reform

Background There is a global drive to improve access to mental healthcare by scaling up integrated mental health into primary healthcare (PHC) systems in low- and middle-income countries (LMICs). Aims To investigate systems-level implications of efforts to scale-up integrated mental healthcare into PHC in districts in six LMICs. Method Semi-structured interviews were conducted with 121 managers and service providers. Transcribed interviews were analysed using framework analysis guided by the Consolidated Framework for Implementation Research and World Health Organization basic building blocks. Results Ensuring that interventions are synergistic with existing health system features and strengthening of the healthcare system building blocks to support integrated chronic care and task-sharing were identified as aiding integration efforts. The latter includes (a) strengthening governance to include technical support for integration efforts as well as multisectoral collaborations; (b) ring-fencing mental health budgets at district level; (c) a critical mass of mental health specialists to support task-sharing; (d) including key mental health indicators in the health information system; (e) psychotropic medication included on free essential drug lists and (f) enabling collaborative and community- oriented PHC-service delivery platforms and continuous quality improvement to aid service delivery challenges in implementation. Conclusions Scaling up integrated mental healthcare in PHC in LMICs is more complex than training general healthcare providers. Leveraging existing health system processes that are synergistic with chronic care services and strengthening healthcare system building blocks to provide a more enabling context for integration are important