BackgroundUnderstanding 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.MethodsParticipants 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.ResultsMost 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.ConclusionsThis 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.Electronic supplementary materialThe online version of this article (doi:10.1186/s12913-016-1383-9) contains supplementary material, which is available to authorized users.

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.

Background.Little has been reported about service provision for children with autism in low-income countries. This study explored the current service provision for children with autism and their families in Ethiopia, the existing challenges and urgent needs, and stakeholders’ views on the best approaches to further develop services.Methods.A situational analysis was conducted based on (i) qualitative interviews with existing service providers; (ii) consultation with a wider group of stakeholders through two stakeholder workshops; and (iii) information available in the public domain. Findings were triangulated where possible.Results.Existing diagnostic and educational services for children with autism are scarce and largely confined to Ethiopia's capital city, with little provision in rural areas. Families of children with autism experience practical and psychosocial challenges, including severe stigma. Informants further raised the lack of culturally and contextually appropriate autism instruments as an important problem to be addressed. The study informants and local stakeholders provided several approaches for future service provision expansion, including service decentralisation, mental health training and awareness raising initiatives.Conclusions.Services for children with autism in Ethiopia are extremely limited; appropriate care for these children is further impeded by stigma and lack of awareness. Ethiopia's plans to scale up mental healthcare integrated into primary care provide an opportunity to expand services for children with autism and other developmental disorders. These plans, together with the additional strategies outlined in this paper can help to address the current service provision gaps and may also inform service enhancement approaches in other low-income countries.

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.

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