Exploring context for implementation of inclusive education for children with developmental disabilities in mainstream primary schools in Ethiopia.

A large gap in provision of services for children with developmental disabilities (DD) has been identified in Ethiopia, especially in the education system. Including children with disabilities in mainstream schools is encouraged by policies, but progress in this direction has been limited. This study aimed to explore stakeholders' perspectives on contextual factors relevant for inclusive education for children with DD in mainstream schools in Ethiopia, with a focus on Adis Ababa. Data were collected through semi-structured interviews with 39 local stakeholders, comprising caregivers of children with DD, school teachers and principals/managers, non-governmental organisation representatives, government officials, clinicians and academics/consultants. We used template analysis to code the data and map them onto domains of the Context and Setting dimensions of the Context and Implementation of Complex Interventions framework. Stakeholders discussed frameworks in the Legal and Ethical context endorsing the right of all children to education. However, they reported multiple reasons why children with DD in Ethiopia have limited access to education, either in special or mainstream schools. First, individual features, such as gender and support needs, discussed in the Epidemiological context, may affect the likelihood of a child with DD to be accepted in school. Transportation challenges are a key barrier in the Geographical context. Socio-economic and Socio-cultural contexts present barriers at the levels of the nation, school and family, mostly related to limited services and material and financial resources and limited awareness of DD. Stakeholders believe the currently limited but growing commitment in the Political context can support progress towards the removal of these barriers. Our findings can form the basis for development of an implementation plan that addresses such barriers and capitalises on existing facilitators.

The impact of raising a child with a developmental or physical health condition in Ethiopia.

OBJECTIVE: Raising a child with a developmental disability or physical health condition can have a major impact on the lives of their families, especially in low-income countries. We explored the impact on such families in Ethiopia. STUDY DESIGN: A total of 241 child-caregiver dyads were recruited from two public hospitals in Addis Ababa, Ethiopia. Of these, 139 children were diagnosed with a developmental disability (e.g. autism, intellectual disability) and 102 children with a physical health condition (e.g. malnutrition, severe HIV infection). The family quality of life was assessed using caregiver reports on the Pediatric Quality of Life Inventory™ (PedsQL-FIM™). The disability weight score, which is a Global Burden of Disease measure to quantify health loss, was estimated for each child. RESULTS: Families with a child with a developmental disability reported lower quality of life than families caring for a child with a physical health condition (p < .001). Mean disability weight scores in children with a developmental disability were higher than in children with a physical health condition (p < .001), indicating more severe health loss. Disability weight scores were negatively associated with the family quality of life in the whole group (B=-16.8, SE=7.5, p = .026), but not in the stratified analyses. CONCLUSIONS: Caring for a child with a developmental disability in Ethiopia is associated with a substantial reduction in the family quality of life. Scaling up support for these children in resource-limited contexts should be prioritized.

Non-specialist delivery of the WHO Caregiver Skills Training Programme for children with developmental disabilities: Stakeholder perspectives about acceptability and feasibility in rural Ethiopia.

LAY ABSTRACT: Children with developmental disabilities including autism who live in low- and middle-income countries have very limited access to care and intervention. The World Health Organization initiated the caregiver skills training programme to support families with children with developmental disabilities. In Ethiopia, contextual factors such as poverty, low literacy and stigma may affect the success of the programme. In this study, we aimed to find out if the caregiver skills training programme is feasible to deliver in rural Ethiopia and acceptable to caregivers and programme facilitators. We trained non-specialist providers to facilitate the programme. Caregivers and non-specialist facilitators were asked about their experiences in interviews and group discussions. Caregivers found the programme relevant to their lives and reported benefits of participation. Facilitators highlighted the skills they had acquired but also emphasised the importance of support from supervisors during the programme. They described that some caregiver skills training programme topics were difficult to teach caregivers. In particular, the idea of play between caregiver and child was unfamiliar to many caregivers. Lack of available toys made it difficult to practise some of the caregiver skills training programme exercises. Participants indicated that the home visits and group training programme components of the caregiver skills training were acceptable and feasible, but there were some practical barriers, such as transportation issues and lack of time for homework practice. These findings may have importance to non-specialist delivery of the caregiver skills training programme in other low-income countries.

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.

Impact of HIV-AIDS on tuberculosis treatment outcome in Southern Ethiopia - A retrospective cohort study.

BACKGROUND: Globally, the Tuberculosis treatment success rate was worse for HIV-positive TB patients compared with HIV- negative TB patients. This study aimed at determining the impact of HIV-AIDS and factors associated with TB treatment outcomes. METHODS: This study was a retrospective cohort study of five years of tuberculosis data from four public health facilities in Hosanna Town. A total of 604 study participants were included using a systematic random sampling technique. Descriptive analysis of ratios, rates, and proportions was done and binary logistic regression, bivariable and multivariable, analysis was also done. RESULT: A total of 604 TB patients were enrolled in this study. 302 (50%) were HIV co-infected. The overall treatment success rate was 90.1% (544/604). Treatment success rates are 86.4% (261/302) for TB-HIV co-infected patients and 93.7% (283/302) for non-co-infected patients. TB-HIV co-infected patients had a higher risk of an unsuccessful treatment outcome (Adjusted Relative Risk [ARR]: 2.7; 95% Confidence Interval [CI]: 1.4 - 5.2). The risk of unsuccessful treatment outcome is also higher among rural residents (ARR: 3.3; CI: 1.4 - 5.0), patients on the re-treatment category (ARR: 2.7; CI: 1.4 - 5.1), and with chronic disease (ARR: 3.3; CI: 1.3 - 8.1). CONCLUSION: TB treatment success rate is good as compared to the WHO minimum requirement. Successful treatment outcome is lower among patients with HIV infection, rural residents, patients on re-treatment, and patients with chronic disease. Therefore, due emphasis should be given to these high-risk groups.

Brief problem-solving therapy for antenatal depressive symptoms in primary care in rural Ethiopia: protocol for a randomised, controlled feasibility trial.

BACKGROUND: Despite a high prevalence of antenatal depression in low- and middle-income countries, there is very little evidence for contextually adapted psychological interventions delivered in rural African settings. The aims of this study are (1) to examine the feasibility of procedures for a future fully powered efficacy trial of contextually adapted brief problem solving therapy (PST) for antenatal depression in rural Ethiopia, and (2) to investigate the acceptability, fidelity and feasibility of delivery of PST in routine antenatal care. METHODS: Design: A randomised, controlled, feasibility trial and mixed method process evaluation. PARTICIPANTS: Consecutive women attending antenatal clinics in two primary care facilities in rural Ethiopian districts. Eligibility criteria: (1) disabling levels of depressive symptoms (Patient Health Questionnaire (PHQ-9) score of five or more and positive for the 10th disability item); (2) gestational age 12-34 weeks; (3) aged 16 years and above; (4) planning to live in the study area for at least 6 months; (5) no severe medical or psychiatric conditions. INTERVENTION: Four sessions of adapted PST delivered by trained and supervised antenatal care staff over a maximum period of eight weeks. CONTROL: enhanced usual care (EUC). SAMPLE SIZE: n = 50. Randomisation: individual randomisation stratified by intimate partner violence (IPV). Allocation: central phone allocation. Outcome assessors and statistician masked to allocation status. Primary feasibility trial outcome: dropout rate. Primary future efficacy trial outcome: change in PHQ-9 score, assessed 9 weeks after recruitment. SECONDARY OUTCOMES: anxiety symptoms, trauma symptoms, intimate partner violence, disability, healthcare costs at 9 weeks; postnatal outcomes (perinatal and neonatal complications, onset of breast feeding, child health) assessed 4-6 weeks postnatal. Other trial feasibility indicators: recruitment, number and duration of sessions attended. Audio-recording of randomly selected sessions and in-depth interviews with purposively selected participants, healthcare providers and supervisors will be analysed thematically to explore the acceptability and feasibility of the trial procedures and fidelity of the delivery of PST. DISCUSSION: The findings of the study will be used to inform the design of a fully powered efficacy trial of brief PST for antenatal depression in routine care in rural Ethiopia. TRIAL REGISTRATION: The protocol was registered in the Pan-African clinical trials registry, (PACTR): registration number: PACTR202008712234907 on 18/08/2020; URL: https://pactr.samrc.ac.za/TrialDisplay.aspx?TrialID=9578 .

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.

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.

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.