Process of adaptation, development and assessment of acceptability of a health educational intervention to improve referral uptake by people with diabetes in Sri Lanka.

BACKGROUND: One major barrier to uptake of diabetic retinopathy (DR) services is lack of knowledge and awareness of DR among the people with diabetes (PwDM). Targeted health education (HE) can be a key element in improving the uptake of eye care services. Such interventions are lacking in Sri Lanka. METHODS: A local context specific HE intervention (HEI) was developed by adopting available resources and incorporating views from PwDM and key stakeholders. Four sessions of participatory workshops with PwDM (20 Sinhala and 13 Tamil speaking) and two stage 12 stakeholder interviews were conducted to both develop and pre-test the material. The products were a video and a leaflet, delivered at a medical clinic to a sample of 45 PwDM identified as having DR. Semi-structured interviews were conducted after 4 weeks, to evaluate the acceptability and comprehension of the HEI. Additionally, nine interviews were conducted with clinical providers to explore process issues related to delivery of the HEI. Data analysis was conducted using thematic analysis. RESULTS: The lack of knowledge and awareness on DR, and of the importance of regular DR screening and follow up, combined with poor information on referral pathways were key elements identified from the workshops with PwDM. The stakeholders prioritised the importance of using simple language, and the need for emphasis on improving understanding about the asymptomatic phase of DR. The overall acceptability of the HEI material was satisfactory, although there was some difficulty with interpretation of medical images. Overall, although PwDM liked the ideas of the video, the leaflet was seen as a more practical option, given the busy clinic environment. The key issue was both formats required interaction with the provider, in order to support understanding of the messages. CONCLUSIONS: The process of adapting HE material is not simply translation into the appropriate language. Instead, a tailored approach in a country, context and particular health services setting is needed. This study illustrates the value of using a participatory approach and involving PwDM and stakeholders in the adaptation and pilot testing of a HEI to improve uptake of screening for DR in the context of Sri Lanka.

A support programme for caregivers of children with disabilities in Ghana: Understanding the impact on the wellbeing of caregivers.

BACKGROUND: Four fifths of the estimated 150 million children with disability in the world live in resource poor settings where the role of the family is crucial in ensuring that these children survive and thrive. Despite their critical role, evidence is lacking on how to provide optimal support to these families. This study explores the impact of a participatory training programme for caregivers delivered through a local support group, with a focus on understanding caregiver wellbeing. METHODS: A qualitative longitudinal study was conducted to investigate the impact of a training programme, "getting to know cerebral palsy," with caregivers on their wellbeing. Eighteen caregivers, from four districts, were interviewed up to three times over 14 months, to assess impact and the reasons for any changes. RESULTS: Low levels of knowledge, high levels of stigma, physical and emotional exhaustion, and often difficult family relationships with social exclusion of the child and caregiver were common themes at the outset. Caregivers struggled to combine their caring and economic activities. This was exacerbated by the common absence of the father. Two months after completion of the training, their reported wellbeing had improved. The reasons for this were an improved understanding about their child's condition, positive attitudinal change towards their child, feelings of hope, and through the group support, a profound realisation that they are "not on their own." While relationships within the family remained complex in many cases, the support group offered an important and alternative social support network. CONCLUSIONS: This study illustrates the many benefits of a relatively simple caregiver intervention, which has the potential to offer a mechanism to provide sustainable social support for caregivers and children with cerebral palsy. Any future programme needs to also address more structural issues, including stigma and discrimination, and strengthen approaches to family engagement.

Plant versus animal based diets and insulin resistance, prediabetes and type 2 diabetes: the Rotterdam Study.

Vegan or vegetarian diets have been suggested to reduce type 2 diabetes (T2D) risk. However, not much is known on whether variation in the degree of having a plant-based versus animal-based diet may be beneficial for prevention of T2D. We aimed to investigate whether level of adherence to a diet high in plant-based foods and low in animal-based foods is associated with insulin resistance, prediabetes, and T2D. Our analysis included 6798 participants (62.7 ± 7.8 years) from the Rotterdam Study (RS), a prospective population-based cohort in the Netherlands. Dietary intake data were collected with food-frequency questionnaires at baseline of three sub-cohorts of RS (RS-I-1: 1989-1993, RS-II-1: 2000-2001, RS-III-1: 2006-2008). We constructed a continuous plant-based dietary index (range 0-92) assessing adherence to a plant-based versus animal-based diet. Insulin resistance at baseline and follow-up was assessed using homeostasis model assessment of insulin resistance (HOMA-IR). Prediabetes and T2D were collected from general practitioners' records, pharmacies' databases, and follow-up examinations in our research center until 2012. We used multivariable linear mixed models to examine association of the index with longitudinal HOMA-IR, and multivariable Cox proportional-hazards regression models to examine associations of the index with risk of prediabetes and T2D. During median 5.7, and 7.3 years of follow-up, we documented 928 prediabetes cases and 642 T2D cases. After adjusting for sociodemographic and lifestyle factors, a higher score on the plant-based dietary index was associated with lower insulin resistance (per 10 units higher score: ß = -0.09; 95% CI: - 0.10; - 0.08), lower prediabetes risk (HR = 0.89; 95% CI: 0.81; 0.98), and lower T2D risk [HR = 0.82 (0.73; 0.92)]. After additional adjustment for BMI, associations attenuated and remained statistically significant for longitudinal insulin resistance [ß = -0.05 (- 0.06; - 0.04)] and T2D risk [HR = 0.87 (0.79; 0.99)], but no longer for prediabetes risk [HR = 0.93 (0.85; 1.03)]. In conclusion, a more plant-based and less animal-based diet may lower risk of insulin resistance, prediabetes and T2D. These findings strengthen recent dietary recommendations to adopt a more plant-based diet.Clinical Trial Registry number and website NTR6831, http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=6831 .

Children with cerebral palsy in Ghana: malnutrition, feeding challenges, and caregiver quality of life.

AIM: To assess feeding difficulties and nutritional status among children with cerebral palsy (CP) in Ghana, and whether severity of feeding difficulties and malnutrition are independently associated with caregiver quality of life (QoL). METHOD: This cross-sectional survey included 76 children with CP (18mo-12y) from four regions of Ghana. Severity of CP was classified using the Gross Motor Function Classification System and anthropometric measures were taken. Caregivers rated their QoL (using the Pediatric Quality of Life Inventory Family Impact Module) and difficulties with eight aspects of child feeding. Logistic regression analysis explored factors (socio-economic characteristics, severity of CP, and feeding difficulties) associated with being underweight. Linear regression was undertaken to assess the relationship between caregiver QoL and child malnutrition and feeding difficulties. RESULTS: Poor nutritional status was common: 65% of children aged under 5 years were categorized as underweight, 54% as stunted, and 58% as wasted. Reported difficulties with child's feeding were common and were associated with the child being underweight (odds ratio 10.7, 95% confidence interval 2.3-49.6) and poorer caregiver QoL (p<0.001). No association between caregiver QoL and nutritional status was evident. INTERPRETATION: Among rural, low resource populations in Ghana, there is a need for appropriate, accessible caregiver training and support around feeding practices of children with CP, to improve child nutritional status and caregiver well-being. WHAT THIS PAPER ADDS: Malnutrition is very common among children with cerebral palsy in this rural population in Ghana. Feeding difficulties in this population were strongly associated with being underweight. Feeding difficulties were associated with poorer caregiver quality of life (QoL). Child nutritional status was not associated with caregiver QoL.

The relationship between HIV and prevalence of disabilities in sub-Saharan Africa: systematic review (FA).

OBJECTIVE: To systematically review evidence on the prevalence and risk of disabilities among children and adults living with HIV in sub-Saharan Africa. METHODS: Articles were identified from 1980 to June 2013 through searching seven electronic databases. Epidemiological studies conducted in sub-Saharan Africa that explored the association between HIV status and general disability or specific impairments, with or without an HIV-uninfected comparison group, were eligible for inclusion. RESULTS: Of 12 867 records initially identified, 61 papers were deemed eligible for inclusion. The prevalence of disability was high across age groups, impairment types and study locations. Furthermore, 73% of studies using an HIV- comparator found significantly lower levels of functioning in people living with HIV (PLHIV). By disability type, the results were as follows: (i) for studies measuring physical impairments (n = 14), median prevalence of limitations in mobility and motor function among PLHIV was 25.0% (95% CI: 21.8-28.2%). Five of eight comparator studies found significantly reduced functioning among PLHIV; for arthritis, two of three studies which used an HIV- comparison group found significantly increased prevalence among PLHIV; (ii) for sensory impairment studies (n = 17), median prevalence of visual impairment was 11.2% (95%CI: 9.5-13.1%) and hearing impairment was 24.1% (95%CI: 19.2-29.0%) in PLHIV. Significantly increased prevalence among PLHIV was found in one of four (vision) and three of three studies (hearing) with comparators; (iii) for cognitive impairment in adults (n = 30), median prevalence for dementia was 25.3% (95% CI: 22.0-28.6%) and 40.9% (95% CI: 37.7-44.1%) for general cognitive impairment. Across all types of cognitive impairment, twelve of fourteen studies found a significant detrimental effect of HIV infection; (iv) for developmental delay in children with HIV (n = 20), median prevalence of motor delay was 67.7% (95% CI: 62.2-73.2%). All nine studies that included a comparator found a significant difference between PLHIV and controls; for cognitive development and global delay, a significant detrimental effect of HIV was found in five of six and one of two studies, respectively. In the nine cohort studies comparing vertically infected and uninfected children, eight showed a significant gap in development over time in children with HIV. Finally, fifteen of thirty-one (48%) studies found a statistically significant dose-response relationship between indicators of disease progression (CD4 or WHO stage) and disability. CONCLUSIONS: HIV is widespread in sub-Saharan Africa and the evidence suggests that it is linked to disabilities, affecting a range of body structures and functions. More research is needed to better understand the implications of HIV-related disability for individuals, their families as well as those working in the fields of disability and HIV so that appropriate interventions can be developed.

Violence against primary school children with disabilities in Uganda: a cross-sectional study.

BACKGROUND: 150 million children live with disabilities globally, and a recent systematic review found 3 to 4 times the levels of violence versus non-disabled children in high income countries. However, almost nothing is known about violence against disabled children in lower income countries. We aim to explore the prevalence, patterns and risk factors for physical, sexual and emotional violence among disabled children attending primary school in Luwero District, Uganda. METHODS: We performed a secondary analysis of data from the baseline survey of the Good Schools Study. 3706 children and young adolescents aged 11-14 were randomly sampled from 42 primary schools. Descriptive statistics were computed and logistic regression models fitted. RESULTS: 8.8% of boys and 7.6% of girls reported a disability. Levels of violence against both disabled and non-disabled children were extremely high. Disabled girls report slightly more physical (99.1% vs 94.6%, p = 0.010) and considerably more sexual violence (23.6% vs 12.3%, p = 0.002) than non-disabled girls; for disabled and non-disabled boys, levels are not statistically different. The school environment is one of the main venues at which violence is occurring, but patterns differ by sex. Risk factors for violence are similar between disabled and non-disabled students. CONCLUSIONS: In Uganda, disabled girls are at particular risk of violence, notably sexual violence. Schools may be a promising venue for intervention delivery. Further research on the epidemiology and prevention of violence against disabled and non-disabled children in low income countries is urgently needed.

Improving experiences of neglected tropical diseases of the skin: Mixed methods formative research for development of a complex intervention in Atwima Mponua District, Ghana.

Integrated approaches to managing co-endemic neglected tropical diseases (NTDs) of the skin within primary healthcare services are complex and require tailoring to local contexts. We describe formative research in Atwima Mponua District in Ghana's Ashanti Region designed to inform the development of a sustainable intervention to improve access to skin NTD care. We employed a convergent, parallel, mixed-methods design, collecting data from February 2021 to February 2022. We quantitatively assessed service readiness using a standardised checklist and reviewed outpatient department registers and condition-specific case records in all government health facilities in the district. Alongside a review of policy documents, we conducted 49 interviews and 7 focus group discussions with purposively selected affected persons, caregivers, community members, health workers, and policy-makers to understand skin NTD care-seeking practices and the policy landscape. Outside the district hospital, skin NTD reporting rates in the surveyed facilities were low; supply chains for skin NTD diagnostics, consumables, and medicines had gaps; and health worker knowledge of skin NTDs was limited. Affected people described fragmented care, provided mostly by hospitals (often outside the district) or traditional healers, resulting in challenges obtaining timely diagnosis and treatment and high care-seeking costs. Affected people experienced stigma, although the extent to which stigma influenced care-seeking behaviour was unclear. National actors were more optimistic than district-level actors about local resource availability for skin NTD care and were sceptical of including traditional healers in interventions. Our findings indicate that improvement of the care cascade for affected individuals to reduce the clinical, economic, and psychosocial impact of skin NTDs is likely to require a complementary set of interventions. These findings have informed the design of a strategy to support high-quality, integrated, decentralised care for skin NTDs in Atwima Mponua, which will be assessed through a multidisciplinary evaluation.

'I might be lucky and go back to school': Factors affecting inclusion in education for children with disabilities in rural Malawi.

Background: Globally, children with disabilities are often excluded from and within schools. Objectives: This study explored experiences of inclusion in education amongst children with disabilities in Malawi. The enquiry focused on the perspectives of children and their caregivers on barriers and enablers of inclusion. Method: Data were gathered through in-depth interviews with 37 children with disabilities, 61 caregivers and 13 teachers from Ntcheu and Mangochi districts and analysed thematically using the International Classification of Functioning, Disability and Health as a framework. Results: Overall, this research study found that children with disabilities face persistent and systemic barriers to attending, progressing and learning in school. Conclusion: School outcomes were influenced by a range of impairment-related, personal and environmental factors, including poor health, household poverty, attitudes of caregivers, teachers, peers and children themselves and school resources for inclusive education. Contribution: These findings carry implications for policy and planning in inclusive education and other services to support the health and well-being of children with disabilities in Malawi.

Livelihood support for caregivers of children with developmental disabilities: findings from a scoping review and stakeholder survey.

PURPOSE: Poverty amongst families with a child with disability adversely impacts child and family quality of life. We aimed to identify existing approaches to livelihood support for caregivers of children with developmental disabilities in low- and middle-income countries. METHODS: This mixed-method study incorporated a scoping literature review and online stakeholder survey. We utilised the World Health Organization community-based rehabilitation (CBR) matrix as a guiding framework for knowledge synthesis and descriptively analysed the included articles and survey responses. RESULTS: We included 11 peer-reviewed publications, 6 grey literature articles, and 49 survey responses from stakeholders working in 22 countries. Identified programmes reported direct and indirect strategies for livelihood support targeting multiple elements of the CBR matrix; particularly skills development, access to social protection measures, and self-employment; frequently in collaboration with specialist partners, and as one component of a wider intervention. Self-help groups were also common. No publications examined effectiveness of livelihood support approaches in mitigating poverty, with most describing observational studies at small scale. CONCLUSION: Whilst stakeholders describe a variety of direct and indirect approaches to livelihood support for caregivers of children with disabilities, there is a lack of published literature on content, process, and impact to inform future programme development and delivery.

Disability and poverty are interlinked, but little is known on approaches to livelihood support for caregivers of children with developmental disabilities in low- and middle-income countries.Stakeholders report direct and indirect strategies for livelihood support targeting multiple livelihood elements; particularly skills development, access to social protection measures and self-employment; frequently in collaboration with specialist partners, and as one component of a wider intervention.Improved reporting of livelihood targeted activities inclusive of evaluation of feasibility, acceptability and impact would support wider implementation of effective livelihood programmes for caregivers of children with disability.

Early care and support for young children with developmental disabilities and their caregivers in Uganda: The Baby Ubuntu feasibility trial.

Background: Early care and support provision for young children with developmental disabilities is frequently lacking, yet has potential to improve child and family outcomes, and is crucial for promoting access to healthcare and early education. We evaluated the feasibility, acceptability, early evidence of impact and provider costs of the Baby Ubuntu participatory, peer-facilitated, group program for young children with developmental disabilities and their caregivers in Uganda. Materials and methods: A feasibility trial, with two parallel groups, compared Baby Ubuntu with standard care. Caregivers and children, aged 6-11 months with moderate-severe neurodevelopmental impairment, were recruited and followed for 12 months. Quantitative and qualitative methods captured information on feasibility (ability to recruit), acceptability (satisfactory attendance), preliminary evidence of impact (family quality of life) and provider costs. Results: One hundred twenty-six infants (median developmental quotient, 28.7) were recruited and randomized (63 per arm) over 9 months, demonstrating feasibility; 101 (80%) completed the 12-month follow-up assessment (9 died, 12 were lost to follow up, 4 withdrew). Of 63 randomized to the intervention, 59 survived (93%); of these, 51 (86%) attended ≥6 modules meeting acceptability criteria, and 49 (83%) completed the 12 month follow-up assessment. Qualitatively, Baby Ubuntu was feasible and acceptable to caregivers and facilitators. Enabling factors included community sensitization by local champions, positive and caring attitudes of facilitators toward children with disability, peer support, and the participatory approach to learning. Among 101 (86%) surviving children seen at 12 months, mixed methods evaluation provided qualitative evidence of impact on family knowledge, skills, and attitudes, however impact on a scored family quality of life tool was inconclusive. Barriers included stigma and exclusion, poverty, and the need to manage expectations around the child's progress. Total provider cost for delivering the program per participant was USD 232. Conclusion: A pilot feasibility trial of the Baby Ubuntu program found it to be feasible and acceptable to children, caregivers and healthcare workers in Uganda. A mixed methods evaluation provided rich programmatic learning including qualitative, but not quantitative, evidence of impact. The cost estimate represents a feasible intervention for this vulnerable group, encouraging financial sustainability at scale. Clinical trial registration: [https://doi.org/10.1186/ISRCTN44380971], identifier [ISRCTN44380971].

Early intervention for children with developmental disabilities in low and middle-income countries - the case for action.

In the last two decades, the global community has made significant progress in saving the lives of children <5 y of age. However, these advances are failing to help all children to thrive, especially children with disabilities. Most early child development research has focussed on the impact of biological and psychosocial factors on the developing brain and the effect of early intervention on child development. Yet studies typically exclude children with disabilities, so relatively little is known about which interventions are effective for this high-risk group. In this article we provide an overview of child development and developmental disabilities. We describe family-centred care interventions that aim to provide optimal stimulation for development in a safe, stable and nurturing environment. We make the case for improving opportunities for children with developmental disabilities to achieve their full potential and thrive, including through inclusive early childhood development intervention. Finally, we call for the global research community to adopt a systematic approach for better evidence for and implementation of early interventions for children with developmental disabilities in low-resource settings.

Illuminating the empowerment journey of caregivers of children with disabilities: Understanding lessons learnt from Ghana.

BACKGROUND: Empowerment is an increasingly popular goal, considered core to a transformative agenda for children with disabilities and their families. However, it can still be a poorly understood concept in practice. OBJECTIVE: This article is an empirical analysis of the 'empowerment journeys' of caregivers participating in a community-based training programme in Ghana. METHOD: In-depth interviews were conducted with 18 caregivers at three time points over 14 months. Thematic analysis was conducted on the full data set, with three representative case studies selected for more detailed analysis to illustrate the dynamism of time and context in shaping the empowerment journey. RESULTS: Our findings illuminate the complexity and non-linearity of the caregiver empowerment journey. There were important gains in individual dimensions of power and the nascent emergence of collective power, through improved knowledge and valuable peer support from group membership. However, further gains were impeded by their limited influence over wider economic and sociopolitical structural issues that perpetuated their experiences of poverty, stigma and the gendered nature of caregiving. The support group facilitator often played a valuable brokering role to help traverse individual agency and structural issues. CONCLUSION: A richer and more nuanced understanding of caregiver empowerment in the community and family context can inform the wider discourse on disability. Guidelines on working with people with disabilities, and the role of empowerment, should not neglect the pivotal role of caregivers. There are important lessons to be learnt if we want to improve family-centred interventions and transform the lives of children with disabilities.

Congenital Zika Syndrome-Assessing the Need for a Family Support Programme in Brazil.

The Zika outbreak in Brazil caused congenital impairments and developmental delays, or Congenital Zika Syndrome (CZS). We sought to ascertain whether a family support programme was needed and, if so, could be adapted from the Getting to Know Cerebral Palsy programme (GTKCP) designed for children with cerebral palsy (CP). We conducted a systematic review of the needs of families of children with CZS or CP in low- and middle-income countries and reviewed the findings of the Social and Economic Impact of Zika study. We undertook a scoping visit to three facilities offering services to children with CZS in Brazil to understand potential utility and adaptability of GTKCP. The literature review showed that caregivers of children with CZS experience challenges in mental health, healthcare access, and quality of life, consistent with the CP literature. The scoping visits demonstrated that most support provided to families was medically orientated and while informal support networks were established, these lacked structure. Caregivers and practitioners expressed an eagerness for more structure community-based family support programmes. A support programme for families of children with CZS in Brazil appeared relevant and needed, and may fill an important gap in the Zika response.

Barriers and Facilitators to Accessing Health Services: A Qualitative Study Amongst People with Disabilities in Cameroon and India.

Background: Article 25 of the UNCRPD stipulates the right of people with disabilities to the highest attainable standard of health, and the timely uptake of appropriate health and rehabilitation services. This study seeks to explore the factors which influence access to health care among adults with disabilities in Cameroon and India. Methods: A total of 61 semi-structured interviews were conducted with a purposive sample of adults with vision, hearing or musculoskeletal impairments, using data from an earlier cross-sectional disability survey. In addition, 30 key informants were interviewed to provide contextual information about the local services and context. Results: Key themes included individual-level factors, understanding and beliefs about an impairment, and the nature of the impairment and interaction with environmental factors. At the community and household level, key themes were family dynamics and attitudes, economic factors, social inclusion and community participation. Intersectionality with gender and age were cross-cutting themes. Trust and acceptability of health service providers in India and poor understanding of referral processes in both countries were key service-level themes. Conclusions: The interaction of environmental and personal factors with the impairment and their levels of participation and inclusion in community structures, all contributed to the take up of services. This study illustrated the need for a multi-faceted response to improve access to health services for people with disabilities.

Improving nutritional status of children with Cerebral palsy: a qualitative study of caregiver experiences and community-based training in Ghana.

BACKGROUND: Cerebral palsy (CP) is the most common childhood disability worldwide, and evidence shows that children with CP are at an increased risk of malnutrition due to feeding difficulties. This qualitative study explores caregiver experiences of feeding before and after a community-based training program in Ghana. METHODS: Thirteen caregivers of children with CP, who were severely undernourished, were interviewed at the start of the training program. Eleven of these were interviewed again after a year of monthly group trainings and home visits, which included guidance on feeding. Four additional caregivers were interviewed at end line. Interviews explored caregivers' mealtime experiences, as well as a 24-hr dietary recall and a structured feeding observation checklist. Children's nutritional status was assessed by anthropometry. RESULTS: Caregivers found mealtimes stressful due to time demands, messiness, and the pressure of providing enough quality food. They felt that the training program had helped reduced this stress and dietary recall data suggested some improved dietary quality. However, there was neither improvement nor deterioration in anthropometric status of the children. CONCLUSION: Group trainings were welcomed by caregivers and notably reduced stress around feeding times. However, future work is needed in order to improve anthropometric outcomes, including, but not limited to, greater focus on nutritional requirements during caregiver training interventions. Therapeutic feeding programs must also be better utilized and need to be better equipped to care for this group of children, including deviating from standard admission and treatment protocols.

A qualitative study on barriers and enablers to uptake of diabetic retinopathy screening by people with diabetes in the Western Province of Sri Lanka.

BACKGROUND: Blindness and visual impairment from diabetic retinopathy (DR) are avoidable through early detection and timely treatment. The Western Province of Sri Lanka has the highest prevalence of diabetes mellitus (DM) (18.6%) in the country. A situational analysis identified a significant gap in DR screening services (DRSS) uptake in this region. Barriers that hinder people with DM (PwDM) from attending DRSS are poorly understood. The purpose of this study is to understand the factors which influence the uptake of DRSS and follow-up to inform health promotion strategies and improve the uptake of these services. METHODS: Eleven focus group discussions (FGDs) were conducted with PwDM who presented to medical, general eye and vitreoretinal services in three public sector institutions (two tertiary and one secondary level) in the Western Province between October 2016 and March 2017. We enrolled six groups (four Sinhala speaking, two Tamil) of women and five groups (three Sinhala and two Tamil) of men representing ethnicity and gender. We performed a thematic analysis and described the main themes and subthemes using the socio-ecological model as a framework. RESULTS: We identified lack of knowledge of both the condition and the need for screening as key barriers to access DRSS. Socio-cultural factors in the family environment, economic reasons and institutional factors were also important barriers. Additional reasons include long waiting time at eye clinics and poor referrals exacerbated by the lack of a systematic DRSS. In addition, attitudes to DRSS such as fear of discomfort from the procedure and the need for accompaniment following mydriasis were also deterrents to follow-up screening. CONCLUSION: This study has shown that there are inter-related user, family, and institutional factors which affect the uptake of DRSS. Understanding how DR is conceptualised by PwDM in this region is essential to refine strategies to improve access to DRSS. Strategies to improve knowledge need to be more culturally acceptable and relevant to PwDM and their families, with increased availability of DRSS at convenient locations may increase timely uptake of screening.

Systematic review on barriers and enablers for access to diabetic retinopathy screening services in different income settings.

BACKGROUND: Diabetic retinopathy (DR) can lead to visual impairment and blindness if not detected and treated in time. Knowing the barriers/enablers in advance in contrasting different country income settings may accelerate development of a successful DR screening (DRS) program. This would be especially applicable in the low-income settings with the rising prevalence of DR. OBJECTIVES: The aim of this systematic review is to identify and contrast the barriers/enablers to DRS for different contexts using both consumers i.e., people with diabetes (PwDM) and provider perspectives and system level factors in different country income settings. METHODS: We searched MEDLINE, Embase, CENTRAL in the Cochrane Library from the databases start date to December 2018. We included the studies reported on barriers and enablers to access DRS services based at health care facilities. We categorised and synthesized themes related to the consumers (individuals), providers and the health systems (environment) as main dimensions according to the constructs of social cognitive theory, supported by the quantitative measures i.e., odds ratios as reported by each of the study authors. MAIN RESULTS: We included 77 studies primarily describing the barriers and enablers. Most of the studies were from high income settings (72.7%, 56/77) and cross sectional in design (76.6%, 59/77). From the perspectives of consumers, lack of knowledge, attitude, awareness and motivation were identified as major barriers. The enablers were fear of blindness, proximity of screening facility, experiences of vision loss and being concerned of eye complications. In providers' perspectives, lack of skilled human resources, training programs, infrastructure of retinal imaging and cost of services were the main barriers. Higher odds of uptake of DRS services was observed when PwDM were provided health education (odds ratio (OR) 4.3) and having knowledge on DR (OR range 1.3-19.7). CONCLUSION: Knowing the barriers to access DRS is a pre-requisite in development of a successful screening program. The awareness, knowledge and attitude of the consumers, availability of skilled human resources and infrastructure emerged as the major barriers to access to DRS in any income setting.

Randomised controlled pilot feasibility trial of an early intervention programme for young infants with neurodevelopmental impairment in Uganda: a study protocol.

INTRODUCTION: Early intervention programmes (EIPs) for infants with neurodevelopmental impairment have been poorly studied especially in low-income settings. We aim to evaluate the feasibility and acceptability of a group participatory EIP, the 'ABAaNA EIP', for young children with neurodevelopmental impairment in Uganda. METHODS AND ANALYSIS: We will conduct a pilot feasibility, single-blinded, randomised controlled trial comparing the EIP with standard care across two study sites (one urban, one rural) in central Uganda. Eligible infants (n=126, age 6-11 completed months) with neurodevelopmental impairment (defined as a developmental quotient <70 on Griffiths Scales of Mental Development, and, or Hammersmith Infant Neurological Examination score <60) will be recruited and randomised to the intervention or standard care arm. Intervention arm families will receive the 10-modular, peer-facilitated, participatory, community-based programme over 6 months. Recruited families will be followed up at 6 and 12 months after recruitment, and assessors will be blinded to the trial allocation. The primary hypothesis is that the ABAaNA EIP is feasible and acceptable when compared with standard care. Primary outcomes of interest are feasibility (number recruited and randomised at baseline) and acceptability (protocol violation of arm allocation and number of sessions attended) and family and child quality of life. Guided by the study aim, the qualitative data analysis will use a data-led thematic framework approach. The findings will inform scalability and sustainability of the programme. ETHICS AND DISSEMINATION: The trial protocol has been approved by the relevant Ugandan and UK ethics committees. Recruited families will give written informed consent and we will follow international codes for ethics and good clinical practice. Dissemination will be through peer-reviewed publications, conference presentations and public engagement. TRIAL REGISTRATION NUMBER: ISRCTN44380971; protocol version 3.0, 19th February 2018.

Blinding Retinopathy of Prematurity in Western India: Characteristics of Children, Reasons for Late Presentation and Impact on Families.

OBJECTIVE: To ascertain why children with end-stage retinopathy of prematurity (ROP) become blind, and to explore the impact of blindness on families. DESIGN: Mixed quantitative and qualitative methods. SETTING: Tertiary-care eye hospital in India. PARTICIPANTS: Children with end-stage ROP and their carers. INTERVENTION: Cases presenting between June 2009 and July 2016 were identified from medical records and data extracted. Carers were contacted for missing information, if required. Data were analyzed to explore where failure had occurred in the process of screening and treatment. A subset of carers were selected for in-depth interviews to explore the impact of having a blind child. Interviews were recorded, transcribed and analyzed using a thematic framework. MAIN OUTCOME MEASURES: Parental perceptions. RESULTS: 66 children were included: median age 4.3 y (range 3 mo- 6 y), 58% boys. 74% were blind due to 'screening failure', which was associated with lower maternal education (P=0.03). Of the 17 case of treatment failure (24.6%), majority (12, 70%) had aggressive posterior ROP. A subset of carers of 18 children (50% boys) were interviewed, mostly mothers. Most reported impoverishment as a result of having a blind child, and many reported lack of access to special education, negative attitudes of others and concerns about the future. CONCLUSIONS: Screening for retinopathy of prematurity needs to be expanded and counselling improved. Access to special education and rehabilitation need to be improved.