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Empowerment of families raising children with developmental disabilities (DDs) is essential to achieving rights-based service development.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.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.Rights-orientated empowerment of caregivers and advocacy may make vital contributions to service development for children with DDs in contexts worldwide.Research questions were revised based on views presented during focus group discussions. Participant feedback on preliminary themes informed the development of the interview guides.

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.

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.

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.

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., Highlights • Parents of children with developmental disorders in Ethiopia report severe stigma. • Not all parents in this qualitative study internalised the stigma directed at them. • Parents also discussed positive reactions and support from others. • Perceived family support and acceptance helped parents not to internalise stigma. • Perceived lack of social support made parents vulnerable to internalised stigma.

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., Highlights • Depression was perceived as problem with its roots in social adversity. • Context matters-those engaged with the health system adopted biomedical models. • Self-help and community resources were the first line in addressing depression. • Traditional and biomedical medicine were used when symptoms were chronic or severe. • Stepped care interventions should take into account local resources and models.

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.

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.

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