The role of a community conversation intervention in reducing stigma related to lower limb lymphoedema in Northern Ethiopia.

BACKGROUND: Stigma related to lower-limb lymphoedema poses a major psychosocial burden to affected persons and acts as a barrier to them accessing morbidity management and disability prevention (MMDP) services. Community Conversation (CC), which actively engages community members and disseminates health information amongst them, is believed to break the vicious cycle of stigma by enhancing disease-related health literacy at the community level. METHODS: A quasi-experimental study was conducted in Northern Ethiopia to assess the role of the CC intervention in reducing stigma. In two control districts, a comprehensive and holistic MMDP care package was implemented that included physical health, mental health and psychosocial interventions, whilst in the intervention district the CC intervention was added to the MMDP care package. A total of 289 persons affected by lymphoedema and 1659 community members without lymphoedema were included in the study. RESULTS: Over the course of the intervention, in all sites, community members' knowledge about the causes of lymphoedema increased, and perceived social distance and stigmatizing attitudes towards people with lymphoedema decreased in the community, whilst experienced and internalized stigma decreased amongst affected persons. There were no significant changes for perceived social support. However, the changes were greater in the control sites overall, i.e. those districts in which the holistic care package was implemented without CC. CONCLUSION: The findings suggest that the CC intervention provides no additional stigma reduction when used alongside a holistic MMDP care package. Provision of comprehensive and holistic MMDP services may be adequate and appropriate to tackle stigma related to lower-limb lymphoedema in a resource-constrained setting like Ethiopia.

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.

Conceptualising the empowerment of caregivers raising children with developmental disabilities in Ethiopia: a qualitative study.

BACKGROUND: Caregivers of children with developmental disabilities (DDs) in Ethiopia experience stigma and exclusion. Due to limited existing services and substantial barriers to accessing care, they often lack support. Caregiver empowerment could help address injustices that hinder their capacity to support their child as they would like. The aim of this study was to explore the meaning and potential role of empowerment for caregivers raising a child with a DD and how empowerment was situated in relation to other priorities in service development. METHODS: This was a qualitative phenomenological study. Semi-structured interviews were conducted in Amharic and English with caregivers of children with a DD (n = 15), clinicians (n = 11), community-based health extension workers (n = 5), representatives of non-governmental organisations working with families with DDs (n = 17), and representatives of local authorities in health, education, and social care (n = 15). Data were analysed thematically. RESULTS: Three main themes were developed: "Barriers to exercising caregivers' agency"; "Whose decision is it to initiate empowerment?"; and "Supporting caregivers through support groups". Caregiver capacity to do what they thought was best for their child was undermined by poverty, a sense of hopelessness, experience of domestic abuse and multiple burdens experienced by those who were single mothers. Caregivers were nonetheless active in seeking to bring about change for their children. Caregivers and professionals considered support groups to be instrumental in facilitating empowerment. Participants reflected that caregiver-focused interventions could contribute to increasing caregivers' capacity to exercise their agency. A tension existed between a focus on individualistic notions of empowerment from some professionals compared to a focus on recognising expertise by experience identified as vital by caregivers. Power dynamics in the context of external funding of empowerment programmes could paradoxically disempower. CONCLUSION: Caregivers of children with DDs in Ethiopia are disempowered through poverty, stigma, and poor access to information and resources. Shifting power to caregivers and increasing their access to opportunities should be done on their own terms and in response to their prioritised needs.

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.

A qualitative process evaluation of a community conversation intervention to reduce stigma related to lower limb lymphoedema in Northern Ethiopia.

BACKGROUND: Lower limb lymphoedema (swelling of the lower leg) due to Neglected Tropical Diseases (NTDs) such as podoconiosis, lymphatic filariasis and leprosy is common in Ethiopia, imposing huge burdens on affected individuals and communities. Stigma significantly increases the disease burden and acts as a major barrier to accessing lymphoedema care services. A multi-component stigma reduction intervention was implemented in Northern Ethiopia. Community Conversation (CC) was one of the components implemented, and aimed to reduce stigma and enhance access to and uptake of integrated lymphoedema care services with the active engagement of community members. METHODS: A cross-sectional qualitative process evaluation was conducted to document lessons focusing on CC's relevance, outcomes and implementation challenges. Data were collected from a total of 55 purposively selected participants (26 from the CC intervention site and 29 from the control site) through key informant interviews, in-depth individual interviews and focus group discussions. RESULTS: Community Conversations increased acceptability of health messages about lymphoedema and created peer learning opportunities for unaffected community members. Improvement in the awareness of CC participants about the causes, prevention and treatment of lymphoedema contributed significantly to the reduction of stigmatizing attitudes and discriminatory behaviors, thereby improving access to and utilization of lymphoedema care services provided through primary health care facilities. However, a range of challenges affecting implementation of CC and outcome quality were identified, including perceived complexity of the facilitation guide among facilitators, expectation of incentives among CC participants, inadequate implementation of facilitation principles and procedures, inadequacy of supportive supervision, and low engagement of untrained health workers in CC. CONCLUSIONS: With these challenges addressed, the implementation of CC integrated with other lymphoedema care services shows potential to reduce stigma and promote access to lymphoedema care services.

Effect of a Community-Based Holistic Care Package on Physical and Psychosocial Outcomes in People with Lower Limb Disorder Caused by Lymphatic Filariasis, Podoconiosis, and Leprosy in Ethiopia: Results from the EnDPoINT Pilot Cohort Study.

Lymphatic filariasis (LF), podoconiosis, and leprosy are highly stigmatized neglected tropical diseases that can cause lower limb swelling and deformity. Simple interventions to support self-care can reduce their physical impacts, but little is known about how to address the psychosocial needs of people living with the diseases, and about how to scale-up morbidity reduction programs. EnDPoINT is a multistage implementation study designed to address these knowledge gaps by developing and evaluating a holistic care package that can be integrated into the Ethiopian health system. This article presents the quantitative results from the EnDPoINT pilot, in which the effectiveness of the care package was assessed in 251 participants from one district in northern Ethiopian using a pre-post design. Reductions 12 months after care package initiation were seen in attacks of acute adenolymphangitis (adjusted odds ratio for attack in last month 0.005; 95% CI 0.001, 0.02; P < 0.001), lower limb and foot circumference (mean difference lower limb circumference -2.0 cm; 95% CI -2.3, -1.8; P < 0.001; foot circumference -2.3 cm; 95% CI -2.5, -2.0; P < 0.001), and lymphedema stage (mean reduction in stage -0.27; 95% CI -0.37, -0.19; P < 0.001). Significant improvements were also observed in scores assessing disability, quality-of-life, depression, stigma, discrimination, and social support. This study thus suggests that the EnDPoINT care package is highly effective in reducing morbidity in people living with LF, podoconiosis, and leprosy in northern Ethiopia.

Stakeholder perspectives on an integrated package of care for lower limb disorders caused by podoconiosis, lymphatic filariasis or leprosy: A qualitative study.

BACKGROUND: Lower limb disorders including lymphoedema create a huge burden for affected persons in their physical and mental health, as well as socioeconomic and psychosocial consequences for them, their families and communities. As routine health services for the integrated management and prevention of lower limb disorders are still lacking, the 'Excellence in Disability Prevention Integrated across Neglected Tropical Diseases' (EnDPoINT) study was implemented to assess the development and delivery of an integrated package of holistic care-including physical health, mental health and psychosocial care-within routine health services for persons with lower limb disorders caused by podoconiosis, lymphatic filariasis and leprosy. METHODOLOGY/PRINCIPAL FINDINGS: This study was part of the first of three phases within EnDPoINT, involving the development of the integrated care package. Focus group discussions and key informant interviews were undertaken with 34 participants between January-February 2019 in Awi zone, Ethiopia, in order to assess the draft care package's feasibility, acceptability and appropriateness. Persons affected by lower limb disorders such as lymphoedema experience stigma, exclusion from families, communities and work as well as physical and financial hardship. Beliefs in disease causation inhibit affected persons from accessing care. Ignorance was a barrier for health care providers as well as affected persons. Training and education of affected persons, communities and caregivers is important in improving care access. It also requires time, space, materials and financial resources. Both top-down and grass roots input into service development are key, as well as collaboration across stakeholders including charities, community leaders and "expert patients". CONCLUSIONS/SIGNIFICANCE: This study highlighted the need for the EnDPoINT integrated care package and provided suggestions for solutions according to its three aspects of integrated care (integration into routine care; integration of mental health and psychosocial care; and integration of care across the three diseases), thereby giving support for its feasibility, acceptability and appropriateness.

Knowledge, attitudes and practices of health professionals towards people living with lymphoedema caused by lymphatic filariasis, podoconiosis and leprosy in northern Ethiopia.

BACKGROUND: Podoconiosis, lymphatic filariasis and leprosy are highly stigmatised neglected tropical diseases that cause lymphoedema. Their enormous impacts on health-related quality of life, mental health and economic productivity can be significantly reduced by morbidity management and disability prevention (MMDP) services, but to deliver such services requires appropriate training of healthcare professionals. The aim of this study was to assess the knowledge, attitudes and practices (KAP) of rural Ethiopian healthcare professionals towards people with lymphoedema as a way to assess training needs. METHODS: This study used questionnaires to quantitatively assess KAP towards people with lymphoedema among rural healthcare professionals in northwest Ethiopia before and 12 months after a short training intervention. RESULTS: Questionnaires were administered to 14 health professionals at baseline and 21 at follow-up. At baseline, 71% (10/14) were found to hold at least one stigmatising attitude towards lymphoedema patients, compared with 66% (14/21) at follow-up. Large gaps in knowledge were noted, with many unable to identify ways of treating/preventing the diseases. CONCLUSIONS: This study showed high proportions of healthcare workers holding stigmatising views and lacking essential knowledge about lymphoedema. To maximise the impact of MMDP interventions, further research is urgently needed to understand how to address these issues.

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.

A qualitative study on the implementation of a holistic care package for control and management of lymphoedema: experience from a pilot intervention in northern Ethiopia.

BACKGROUND: Neglected Tropical Diseases (NTDs) such as podoconiosis, lymphatic filariasis (LF) and leprosy mainly affect communities in low resource settings. These diseases are associated with physical disability due to lymphoedema as well as poor mental health and psychosocial outcomes. Integration of care across these NTDs at primary health care level, which includes mental health and psychosocial care alongside physical health care, is increasingly recommended. METHODS: A holistic integrated care package was developed and piloted as part of the EnDPoINT project in Gusha district, Awi zone, Ethiopia. The intervention was conducted at the health care organization, health facility and community levels. To assess the impact of the care package in terms of acceptability, scalability, sustainability and barriers to implementation, a qualitative study was conducted in January 2020. This included four focus group discussions (29 participants) and ten key informant interviews with decision makers, health professionals, patients, and community representatives. RESULTS: The integrated lymphoedema care package was found to be efficient compared to vertical programs in saving time and resources. It also resulted in improved awareness of the causes, treatment and prevention of lymphoedema, in marked improvements in the lymphoedema, and in reduced stigma and discrimination. The care package was found to be acceptable to patients, health professionals and decision makers. The barriers to integrated care were unrealistic patient expectations, inadequate dissemination across health workers, and poor transportation access. Health professionals, decision makers and patients believed the integrated lymphoedema care package to be scalable and sustainable. CONCLUSION: The integrated holistic care package was found to be acceptable to patients, health professionals and decision makers. We recommend its scale-up to other endemic districts.

Development of an integrated, holistic care package for people with lymphoedema for use at the level of the Primary Health Care Unit in Ethiopia.

BACKGROUND: Neglected Tropical Diseases (NTDs) are a group of several communicable and non-communicable diseases prevalent in tropical and subtropical areas. The co-endemicity of these diseases, the similarity of their clinical signs, and the need to maximize limited financial and human resources suggest the importance of adoptingan integratedapproach to their prevention and treatment. AIMS: This study describes the development of a comprehensive package of physical, mental health and psychosocial care for people with lower-limb lymphoedema caused bypodoconiosis, lymphatic filariasis (LF)or leprosy as part of the EnDPoINT program in Ethiopia. METHOD: The care package was developed using a mixed-methods approach, consisting of a literature review, situational analysis, Theory of Change (ToC) workshops, qualitative research, and additional workshops to fine-tune the draft care package. The care package was developed between March 2018 and January 2020 in Addis Ababa and the implementation research site, Awi zone in the North-West of Ethiopia. RESULTS: The holistic care package includes components implemented at three levels of the health care system:health organization, facility, and community. Sections of the care package are directed at strengthening capacity building, program management, community engagement, awareness-raising, stigma-reduction, morbidity management, disability prevention, follow-up visits, referral linkage, community-based rehabilitation, and monitoring and evaluation. CONCLUSIONS: The study developed a holistic integrated care package for lower limb disorder and co-morbid mental health problems caused by podoconiosis, LF or leprosy. The approach has the potential to significantly reduce lower limb disorder-associated morbidity, disability, and psychosocial problems. It also standardizes a scalable approach appropriate for the Ethiopian setting and, most likely, other countries where these NTDs are present.

A cross-sectional study to evaluate depression and quality of life among patients with lymphoedema due to podoconiosis, lymphatic filariasis and leprosy.

BACKGROUND: Podoconiosis, lymphatic filariasis (LF) and leprosy are neglected tropical diseases (NTDs) that cause lymphoedema. When left untreated, they lead to substantial disability. This study determined the quality of life (QOL) and depression associated with lymphoedema in patients with podoconiosis, LF and leprosy. The study was conducted in northwestern Ethiopia. METHODS: This baseline cross-sectional study, nested within an interventional, non-comparative, longitudinal study, included patients with lymphoedema. Depression and QOL were assessed using versions of the 9-item Patient Health Questionnaire and Dermatologic Life Quality Index (DLQI), respectively, that had been translated into Amharic and validated. Factors associated with depression and QOL were assessed using multivariate linear regression analysis. RESULTS: Of the 251 patients with lymphoedema included in the study, 119 (47.4%) had moderate to severe depression and overall QOL was poor (mean±standard deviation [SD] DLQI score: 11.4±4.2). Disability was significantly associated with depression (ß=0.26 [95% confidence interval {CI} 0.19 to 0.33]). Currently receiving treatment (ß=-3.05 [95% CI -5.25 to -0.85), disability (ß=-0.08 [95% CI -0.15 to -0.01]) and social support (moderate support: ß=-2.27 [95% CI -3.66 to -0.89] and strong support: ß=-2.87 [95% CI -5.35 to -0.38]) were significantly associated with better QOL. CONCLUSION: High levels of depression and low QOL were found among patients with lymphoedema due the three NTDs in Ethiopia.

Economic assessment of a community-based care package for people with lower limb disorder caused by lymphatic filariasis, podoconiosis and leprosy in Ethiopia.

We conducted an implementation research study to integrate a holistic package of physical health, mental health and psychosocial care for podoconiosis, lymphatic filariasis and leprosy into routine healthcare in Gusha cluster, Guagusa Shikudad district, northwest Ethiopia. The healthcare package included training patients in lower limb hygiene and skin care and provision of shoes, hygiene supplies and medication. The implementation activities included training events, workshops, awareness raising, self-help groups, supportive supervision, staff secondments and advisory board meetings. The cost of implementing the care package in Gusha cluster, with a population of 30 558 people, was 802 655 Ethiopian birr (ETB) (£48 159) and the cost of delivering care to 235 participants was 204 388 ETB (£12 263), or 870 ETB (£52) per person. There was a 35% decrease in the mean disability scores (measured using the World Health Organization Disability Assessment Schedule 2.0) and a 45% improvement in the dermatology-specific quality of life (measured using the Dermatology Life Quality Index) at the 3-month follow-up compared with baseline. There were reductions in the number of days with symptoms, days off usual activities/work and days with reduced activity due to illness, all of which were statistically significant. Our pilot suggests that integration of the care package into routine healthcare in Ethiopia may be effective in improving health-related quality of life and disability and reducing time out of economic activity due to illness.

EnDPoINT: protocol for an implementation research study to integrate a holistic package of physical health, mental health and psychosocial care for podoconiosis, lymphatic filariasis and leprosy into routine health services in Ethiopia.

INTRODUCTION: Neglected tropical diseases (NTDs) causing lower limb lymphoedema such as podoconiosis, lymphatic filariasis (LF) and leprosy are common in Ethiopia. Routine health services for morbidity management and disability prevention (MMDP) of lymphoedema caused by these conditions are still lacking, even though it imposes a huge burden on affected individuals and their communities in terms of physical and mental health, and psychosocial and economic outcomes. This calls for an integrated, holistic approach to MMDP across these three diseases. METHODS AND ANALYSIS: The 'Excellence in Disability Prevention Integrated across NTDs' (EnDPoINT) implementation research study aims to assess the integration and scale-up of a holistic package of care-including physical health, mental health and psychosocial care-into routine health services for people with lymphoedema caused by podoconiosis, LF and leprosy in selected districts in Awi zone in the North-West of Ethiopia. The study is being carried out over three phases using a wide range of mixed methodologies. Phase 1 involves the development of a comprehensive holistic care package and strategies for its integration into the routine health services across the three diseases, and to examine the factors that influence integration and the roles of key health system actors. Phase 2 involves a pilot study conducted in one subdistrict in Awi zone, to establish the care package's adoption, feasibility, acceptability, fidelity, potential effectiveness, its readiness for scale-up, costs of the interventions and the suitability of the training and training materials. Phase 3 involves scale-up of the care package in three whole districts, as well as its evaluation in regard to coverage, implementation, clinical (physical health, mental health and psychosocial) and economic outcomes. ETHICS AND DISSEMINATION: Ethics approval for the study has been obtained in the UK and Ethiopia. The results will be disseminated through publications in scientific journals, conference presentations, policy briefs and workshops.

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.