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.
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.
BackgroundCommunity health workers can help to address the substantial unmet need for child mental health care in low and middle income countries. However, little is known about their training needs for this potential role. The aim of this study was to examine training needs and perspectives of community health extension workers (HEWs) in relation to providing child mental health care in rural Ethiopia.MethodsThe study was conducted in the Southern Nations, Nationalities and Peoples’ Region of Ethiopia. A mixed methods approach was used. A total of 104 HEWs who had received training in child mental health using the Health Education and Training (HEAT) curriculum were interviewed using a structured survey. In-depth interviews were then conducted with 11 HEWs purposively selected on the basis of the administrative zone they had come from. A framework approach was used for qualitative data analysis.ResultsMost of the HEWs (88.5%; n = 93/104) reported that they were interested in the training provided and all respondents considered child mental health to be important. The perceived benefits of training included improved knowledge (n = 52), case identification (n = 14) and service provision (n = 22). While most of the participants had their training four months prior to the interview, over a third of them (35.6%; n = 37) had already organized mental health awareness-raising meetings. Participants in the qualitative interviews considered the problem of child mental disorders to be widespread and to cause a large burden to the family and the affected children. They reported that improving their competence and knowledge was important to address the problem and to tackle stigma and discrimination. Participants also listed some barriers for service provision, including lack of competence, stigma and institutional constraints. Opportunities mentioned included staff commitment, high levels of interest and a positive attitude towards providing the service.ConclusionsAlthough the HEAT training on child mental health was brief, it appears to have had some impact in improving knowledge and care provision. If the key barriers to service provision are addressed and supported by policy guidance, community health workers may contribute substantially in addressing the treatment gap for children with mental health needs.
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