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.

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

[This corrects the article DOI: 10.1371/journal.pone.0272077.].

Understandings of depression among community members and primary healthcare attendees in rural Ethiopia: A qualitative study.

Available evidence in Africa suggests that the prevalence of depression in primary care settings is high but it often goes unrecognized. In this study, we explored how depression is conceptualized and communicated among community members and primary care attendees diagnosed with depression in rural Ethiopia with the view to informing the development of interventions to improve detection. We conducted individual interviews with purposively selected primary care attendees with depression (n = 28; 16 females and 12 males) and focus group discussions (FGDs) with males, females, and priests (n = 21) selected based on their knowledge of their community. Data were analyzed using thematic analysis. None of the community members identified depression as a mental illness. They considered depressive symptoms presented in a vignette as part of a normal reaction to the stresses of life. They considered medical intervention only when the woman's condition in the vignette deteriorated and "affected her mind." In contrast, participants with depression talked about their condition as illness. Symptoms spontaneously reported by these participants only partially matched symptoms listed in the current diagnostic criteria for depressive disorders. In all participants' accounts, spiritual explanations and traditional healing were prominent. The severity of symptoms mediates the decision to seek medical help. Improved detection may require an understanding of local conceptualizations in order to negotiate an intervention that is acceptable to affected people.

The experiences of parents raising children with developmental disabilities in Ethiopia.

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.

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.

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

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.

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.

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.

Perceptions and experiences of stigma among parents of children with developmental disorders in Ethiopia: A qualitative study.

Although stigma related to developmental disorders (DD) has been associated with poor mental health among caregivers, an in-depth understanding of factors that influence internalisation of stigma by caregivers is missing. The aim of our study was to explore perceptions and experiences of stigma among parents of children with DD in Ethiopia and examine the contributing and protective factors for internalised stigma based on the perspectives of the parents themselves. We conducted in-depth interviews with eighteen parents (fourteen mothers, four fathers) in Addis Ababa (between December 25, 2017 and January 8, 2018) and the rural town of Butajira (between August 08, 2018 and August 16, 2018). We analysed the data using thematic analysis. Parents perceived and experienced different forms of stigma that were directed towards their child (public stigma) and themselves (courtesy stigma). Some parents also described how they isolated themselves and their child from social life (affiliate stigma). Parents perceived the negative consequence of stigma on the lives of their child with DD, siblings and themselves. Most parents also described examples of positive reactions and support from their own family and the community. Participants' accounts suggested supportive contributions and positive responses from the general public came primarily from those who had better awareness of DD. Not all parents in our study internalised the stigma that was directed at them. Whilst perceived family support and acceptance and increased awareness about DD appeared to help some parents not to internalise stigma, the perceived lack of social support and acceptance made some parents vulnerable to internalised stigma. These findings can inform anti-stigma intervention priorities. Awareness-raising activities targeting the community as a whole as well as interventions targeting parents themselves are likely to be beneficial. Interventions should consider the wellbeing of the whole family unit rather than focus on individuals alone.

Explanatory models of depression in sub-Saharan Africa: Synthesis of qualitative evidence.

Debate about the cross-cultural relevance of depression has been central to cross-cultural psychiatry and global mental health. Although there is now a wealth of evidence pertaining to symptoms across different cultural settings, the role of the health system in addressing these problems remains contentious. Depression is undetected among people attending health facilities. We carried out a thematic synthesis of qualitative evidence published in the scientific literature from sub-Saharan Africa to understand how depression is debated, deployed and described. No date limits were set for inclusion of articles. Our results included 23 studies carried out in communities, among people living with HIV, attendees of primary healthcare and with healthcare workers and traditional healers. Included studies were carried out between 1995 and 2018. In most cases, depression was differentiated from 'madness' and seen to have its roots in social adversity, predominantly economic and relationship problems, sometimes entangled with HIV. Participants described the alienation that resulted from depression and a range of self-help and community resources utilised to combat this isolation. Both spiritual and biomedical causes, and treatment, were considered when symptoms were very severe and/or other possibilities had been considered and discarded. Context shaped narratives: people already engaged with the health system for another illness such as HIV were more likely to describe their depression in biomedical terms. Resolution of depression focussed upon remaking the life world, bringing the individual back to familiar rhythms, whether this was through the mechanism of encouraging socialisation, prayer, spiritual healing or biomedical treatment. Our findings suggest that it is essential that practitioners and researchers are fluent in local conceptualisations and aware of local resources to address depression. Design of interventions offered within the health system that are attuned to this are likely to be welcomed as an option among other resources available to people living with depression.

Adapting and pre-testing the World Health Organization's Caregiver Skills Training programme for autism and other developmental disorders in a very low-resource setting: Findings from Ethiopia.

The World Health Organization's Caregiver Skills Training programme for children with developmental disorders or delays teaches caregivers strategies to help them support their child's development. Ethiopia has a severe lack of services for children with developmental disorders or delays. This study explored the perspectives of Ethiopian caregivers, professionals and other stakeholders to inform adaptation and implementation of the World Health Organization's Caregiver Skills Training in Ethiopia. Data collection included (1) a consultation and review, comprising stakeholder meetings, review of draft Caregiver Skills Training materials and feedback from Ethiopian Master Trainees and (2) a pre-pilot including quantitative feasibility and acceptability measures and qualitative interviews with caregivers (n = 9) and programme facilitators/observers (n = 5). The consultation participants indicated that the Caregiver Skills Training addresses an urgent need and is relevant to the Ethiopian context. Several adaptations were proposed, including more emphasis on psycho-education, stigma, parental feelings of guilt and expectations of a cure. The adapted Caregiver Skills Training was pre-piloted with excellent participation (100%) and retention (90%) rates. Four themes were developed from the qualitative data: (1) Programme acceptability and relevance, (2) Perceived programme benefits, (3) Challenges and barriers and (4) Suggestions for improvement. The World Health Organization's Caregiver Skills Training addresses a local need and, with careful adaptations, is feasible and acceptable to be implemented in Ethiopia. These findings may have relevance to low-resource settings worldwide.

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. DECLARATION OF INTEREST: None.

Ethiopian community health workers' beliefs and attitudes towards children with autism: Impact of a brief training intervention.

There is a severe shortage of services for children with autism in Ethiopia; access to services is further impeded by negative beliefs and stigmatising attitudes towards affected children and their families. To increase access to services, care provision is decentralised through task-shifted care by community health extension workers. This study aimed to examine the impact of a brief training (Health Education and Training; HEAT) for Ethiopian rural health extension workers and comprised three groups: (1) health extension workers who completed a basic mental health training module (HEAT group, N = 104); (2) health extension workers who received enhanced training, comprising basic HEAT as well as video-based training on developmental disorders and a mental health pocket guide (HEAT+ group, N = 97); and (3) health extension workers untrained in mental health (N = 108). All participants completed a questionnaire assessing beliefs and social distance towards children with autism. Both the HEAT and HEAT+ group showed fewer negative beliefs and decreased social distance towards children with autism compared to the untrained health extension worker group, with the HEAT+ group outperforming the HEAT group. However, HEAT+ trained health extension workers were less likely to have positive expectations about children with autism than untrained health extension workers. These findings have relevance for task-sharing and scale up of autism services in low-resource settings worldwide.

Nothing about us without us: the importance of local collaboration and engagement in the global study of autism.

Our current understanding of autism and other developmental disorders is primarily based on research conducted in high-income countries, predominantly in North America and Europe. Even within high-income countries, White participants are overrepresented in autism research. There is now increased recognition that a more global and diverse research representation is warranted. This paper argues that in order for global and diverse research efforts to be effective, it is essential to collaborate and engage with local experts and stakeholders, including local researchers, clinicians and representatives from governmental and non-governmental organisations. Such collaborations ensure that studies use culturally appropriate methods and materials, and that research findings are interpreted taking local context into account. Ultimately, these collaborations build local capacity and foster the development of culturally and contextually appropriate interventions that address locally perceived needs. The adage 'nothing about us without us' is vital to global autism research.

Stigma, explanatory models and unmet needs of caregivers of children with developmental disorders in a low-income African country: a cross-sectional facility-based survey.

BACKGROUND: Understanding the perspectives of caregivers of children with developmental disorders living in low-income countries is important to inform intervention programmes. The purpose of this study was to examine the stigma experiences, explanatory models, unmet needs, preferred interventions and coping mechanisms of caregivers of children with developmental disorders in Ethiopia. METHODS: Participants comprised caregivers (n = 102) of children with developmental disorders attending two child mental health clinics in Addis Ababa. The majority (66.7%; n = 68) had a diagnosis of intellectual disability (ID); 34 children (33.3%) had autism spectrum disorder (ASD) as their primary diagnosis. All caregivers were administered a structured questionnaire via a face-to-face interview, which included an adaptation of the Family Interview Schedule, closed questions about socio-demographic characteristics, explanatory models of illness, type of interventions used or desired and coping strategies, and an open ended question regarding the family's unmet needs. RESULTS: Most caregivers reported experience of stigma: 43.1% worried about being treated differently, 45.1% felt ashamed about their child's condition and 26.7% made an effort to keep their child's condition secret. Stigma did not depend on the type of developmental disorder, the child's age or gender, or on the age or level of education of the caregiver (all p > 0.05). Reported stigma was significantly higher in caregivers who had sought traditional help (p < 0.01), provided supernatural explanations for their child's condition (p = .02) and in caregivers of Orthodox Christian faith (p = .03). Caregivers gave a mixture of biomedical explanations (e.g. head injury (30.4%) or birth complications (25.5%)) and supernatural explanations (e.g. spirit possession (40.2%) or sinful act (27.5%)) for their child's condition. The biggest reported unmet need was educational provision for their child (74.5%), followed by treatment by a health professional (47.1%), financial support (30.4%) and expert help to support their child's development (27.5%). Most caregivers reported that talking to health professionals (86.3%) and family (85.3%) helped them to cope. Many caregivers also used support from friends (76.5%) and prayer (57.8%) as coping mechanisms. CONCLUSIONS: This study highlights the stigma experienced by families caring for a child with a developmental disorder. Designing interventions appropriate for low-income settings that improve awareness about developmental disorders, decrease stigma, improve access to appropriate education and strengthen caregivers' support are needed.