Supporting caregivers of children living with disability in a humanitarian context: realist-informed evaluation of the 'Mighty Children' programme in Afghanistan.

INTRODUCTION: To ensure that humanitarian action is disability-inclusive, evidence is needed to understand how different strategies to support children living with disabilities and their families can work in these settings. Evidence from other contexts suggests support groups can improve caregiver quality of life (QOL). This study reports an evaluation of the 'Mighty Children' programme a participatory educational support group programme for caregivers of children living with disability in Kabul province, Afghanistan. METHODS: We conducted a mixed-methods realist-informed before-and-after study to measure change in caregiver-reported QOL and explore how and for whom the programme worked, and in what contexts. Female caregivers of children with any disability were recruited through clinics in urban Kabul (n=3) and rural Paghman district (n=3). We collected quantitative data on QOL pre/post programme using the Paediatric Quality of Life Inventory Family Impact Module (PedsQL-FIM). Qualitative data were collected through facilitator and participant focus groups postprogramme. RESULTS: 118 caregivers participated in two cohorts (November 2020, February 2021). Caregivers expressed a significant increase in QOL from baseline to programme completion (t(125)=-10.7, p≤0.0001). Participation in cohort 2 was associated with the greatest PedsQL-FIM change.Qualitative data revealed positive changes postprogramme in five key areas: caregiver mindset, parenting practices, disability-inclusive behaviours, psychological well-being and child functioning. These changes were seen as both outcomes and mechanisms influencing the primary outcome of QOL. Mechanisms that mediated these changes included increased knowledge of disability and the core acceptance and commitment therapy components of mindfulness and acceptance. CONCLUSION: The Mighty Children caregiver support programme for children living with disability in Afghanistan was associated with improved caregiver QOL. Further studies are warranted to explore pathways to scale, sustainability and potential application in other settings.

Human resources and curricula content for early child development implementation: multicountry mixed methods evaluation.

OBJECTIVE: The WHO recommends responsive caregiving and early learning (RCEL) interventions to improve early child development (ECD), and to achieve the Sustainable Development Goals' vision of a world where all children thrive. Implementation of RCEL programmes in low and middle-income countries (LMIC) requires evidence to inform decisions about human resources and curricula content. We aimed to describe human resources and curricula content for implementation of RCEL projects across diverse LMICs, using data from the Grand Challenges Canada Saving Brains ECD portfolio. SETTING: We evaluated 32 RCEL projects across 17 LMICs on four continents. PARTICIPANTS: Overall, 2165 workers delivered ECD interventions to 25 909 families. INTERVENTION: Projects were either stand-alone RCEL or RCEL combined with health and nutrition, and/or safety and security. PRIMARY AND SECONDARY OUTCOMES: We undertook a mixed methods evaluation of RCEL projects within the Saving Brains portfolio. Quantitative data were collected through standardised reporting tools. Qualitative data were collected from ECD experts and stakeholders and analysed using thematic content analysis, informed by literature review. RESULTS: Major themes regarding human resources included: worker characteristics, incentivisation, retention, training and supervision, and regarding curricula content: flexible adaptation of content and delivery, fidelity, and intervention duration and dosage. Lack of an agreed standard ECD package contributed to project heterogeneity. Incorporation of ECD into existing services may facilitate scale-up but overburdened workers plus potential reductions in service quality remain challenging. Supportive training and supervision, inducement, worker retention, dosage and delivery modality emerged as key implementation decisions. CONCLUSIONS: This mixed methods evaluation of a multicountry ECD portfolio identified themes for consideration by policymakers and programme leaders relevant to RCEL implementation in diverse LMICs. Larger studies, which also examine impact, including high-quality process and costing evaluations with comparable data, are required to further inform decisions for implementation of RCEL projects at national and regional scales.

Contextual design choices and partnerships for scaling early child development programmes.

Translating the Nurturing Care Framework and unprecedented global policy support for early child development (ECD) into action requires evidence-informed guidance about how to implement ECD programmes at national and regional scale. We completed a literature review and participatory mixed-method evaluation of projects in Saving Brains®, Grand Challenges Canada® funded ECD portfolio across 23 low- and middle-income countries (LMIC). Using an adapted programme cycle, findings from evaluation related to partnerships and leadership, situational analyses, and design for scaling ECD were considered. 39 projects (5 'Transition to Scale' and 34 'Seed') were evaluated. 63% were delivered through health and 84% focused on Responsive Caregiving and Early Learning (RCEL). Multilevel partnerships, leadership and targeted situational analysis were crucial to design and adaptation. A theory of change approach to consider pathways to impact was useful for design, but practical situational analysis tools and local data to guide these processes were lacking. Several RCEL programmes, implemented within government services, had positive impacts on ECD outcomes and created more enabling caregiving environments. Engagement of informal and private sectors provided an alternative approach for reaching children where government services were sparse. Cost-effectiveness was infrequently measured. At small-scale RCEL interventions can be successfully adapted and implemented across diverse settings through processes which are responsive to situational analysis within a partnership model. Accelerating progress will require longitudinal evaluation of ECD interventions at much larger scale, including programmes targeting children with disabilities and humanitarian settings with further exploration of cost-effectiveness, critical content and human resources.

Counting outcomes, coverage and quality for early child development programmes.

Improved measurement in early child development (ECD) is a strategic focus of the WHO, UNICEF and World Bank Nurturing Care Framework. However, evidence-based approaches to monitoring and evaluation (M&E) of ECD projects in low-income and middle-income countries (LMIC) are lacking. The Grand Challenges Canada®-funded Saving Brains® ECD portfolio provides a unique opportunity to explore approaches to M&E of ECD programmes across diverse settings. Focused literature review and participatory mixed-method evaluation of the Saving Brains portfolio was undertaken using an adapted impact framework. Findings related to measurement of quality, coverage and outcomes for scaling ECD were considered. Thirty-nine ECD projects implemented in 23 LMIC were evaluated. Projects used a 'theory of change' based M&E approach to measure a range of inputs, outputs and outcomes. Over 29 projects measured cognitive, language, motor and socioemotional outcomes. 18 projects used developmental screening tools to measure outcomes, with a trade-off between feasibility and preferred practice. Environmental inputs such as the home environment were measured in 15 projects. Qualitative data reflected the importance of measurement of project quality and coverage, despite challenges measuring these constructs across contexts. Improved measurement of intervention quality and measurement of coverage, which requires definition of the numerator (ie, intervention) and denominator (ie, population in need/at risk), are needed for scaling ECD programmes. Innovation in outcome measurement, including intermediary outcome measures that are feasible and practical to measure in routine services, is also required, with disaggregation to better target interventions to those most in need and ensure that no child is left behind.

Accountability for funds for Nurturing Care: what can we measure?

BACKGROUND: Understanding donor, government and out-of-pocket funding for early child development (ECD) is important for tracking progress. We aimed to estimate a baseline for the WHO, UNICEF and World Bank Nurturing Care Framework (NCF) with a special focus on childhood disability. METHODS: To estimate development assistance spending, the Organisation for Economic Cooperation and Development's Creditor Reporting System (OECD-CRS) database was searched for 2007-2016, using key words derived from domains of the NCF (good health, nutrition and growth, responsive caregiving, security and safety, and early learning), plus disability. Associated funds were analysed by domain, donor, recipient and region. Trends of ECD/NCF were compared with reproductive, maternal, newborn and child health (RMNCH) disbursements. To assess domestic or out-of-pocket expenditure for ECD, we searched electronic databases of indexed and grey literature. RESULTS: US$79.1 billion of development assistance were disbursed, mostly for health and nutrition (US$61.9 billion, 78% of total) and least for disability (US$0.7 billion, 2% of total). US$2.3 per child per year were disbursed for non-health ECD activities. Total development assistance for ECD increased by 121% between 2007 and 2016, an average increase of 8.3% annually. Per child disbursements increased more in Africa and Asia, while minimally in Latin America and the Caribbean and Oceania. We could not find comparable sources for domestic funding and out-of-pocket expenditure. CONCLUSIONS: Estimated international donor disbursements for ECD remain small compared with RMNCH. Limitations include inconsistent donor terminology in OECD data. Increased investment will be required in the poorest countries and for childhood disability to ensure that progress is equitable.

Rating early child development outcome measurement tools for routine health programme use.

BACKGROUND: Identification of children at risk of developmental delay and/or impairment requires valid measurement of early child development (ECD). We systematically assess ECD measurement tools for accuracy and feasibility for use in routine services in low-income and middle-income countries (LMIC). METHODS: Building on World Bank and peer-reviewed literature reviews, we identified available ECD measurement tools for children aged 0-3 years used in ≥1 LMIC and matrixed these according to when (child age) and what (ECD domains) they measure at population or individual level. Tools measuring <2 years and covering ≥3 developmental domains, including cognition, were rated for accuracy and feasibility criteria using a rating approach derived from Grading of Recommendations, Assessment, Development and Evaluations. RESULTS: 61 tools were initially identified, 8% (n=5) population-level and 92% (n=56) individual-level screening or ability tests. Of these, 27 tools covering ≥3 domains beginning <2 years of age were selected for rating accuracy and feasibility. Recently developed population-level tools (n=2) rated highly overall, particularly in reliability, cultural adaptability, administration time and geographical uptake. Individual-level tool (n=25) ratings were variable, generally highest for reliability and lowest for accessibility, training, clinical relevance and geographical uptake. CONCLUSIONS AND IMPLICATIONS: Although multiple measurement tools exist, few are designed for multidomain ECD measurement in young children, especially in LMIC. No available tools rated strongly across all accuracy and feasibility criteria with accessibility, training requirements, clinical relevance and geographical uptake being poor for most tools. Further research is recommended to explore this gap in fit-for-purpose tools to monitor ECD in routine LMIC health services.

Neurodevelopmental outcomes for high-risk neonates in a low-resource setting.

Worldwide, most neonates who survive prematurity and serious illness reside in low-resource settings where developmental outcome data and follow-up care are limited. This study aimed to assess in Fiji, a low-resource Pacific setting, prevalence and risk factors for moderate to severe neurodevelopmental impairment (NDI) in early childhood among high-risk neonates compared with controls. Retrospective cohort study comparing long-term outcomes for high-risk neonatal intensive care unit patients (n=149) compared with matched term, normal birth weight neonates (n=147) discharged from Colonial War Memorial Hospital between November 2008 and April 2010. NDI was defined as one or more of cerebral palsy, moderate to severe hearing or visual impairment, or global developmental delay using Bayley Scales of Infant and Toddler Development Third Edition (ie, score <70 in ≥1 of cognitive, language or motor domains). At median (IQR) age 36.1 (28.3, 38.0) months, prevalence of moderate to severe NDI % (95% CI, n) in high-risk and control groups was 12 (5 to 17, n=13) and 5 (2 to 12, n=5), respectively, an increased risk ratio (95% CI) of 2.7 (0.8 to 8.9). Median gestational age (weeks (median, IQR)) in the high-risk group was 37.5 (34-40) weeks. Among high-risk neonates, gestational age, birth weight, asphyxia, meningitis and/or respiratory distress were significantly associated with risk of NDI. Prevalence of NDI was high among this predominantly term high-risk neonatal cohort compared with controls. Results, including identified risk factors, inform efforts to strengthen quality of care and models of follow-up for high-risk neonates in this low-resource setting.

Reducing newborn mortality in the Asia-Pacific region: Quality hospital services and community-based care.

Improving newborn health and survival is an essential part of progression toward Millennium Development Goal 4 in the World Health Organization Western Pacific and South East Asian regions. Both community and facility-based services are required. Strategies to improve the quality of care provided for newborns in health clinics and district- and referral-level hospitals have been relatively neglected in most countries in the region and in the published literature. Indirect historical evidence suggests that improving facility-based care will be an increasing priority for improving newborn survival in Asia and the Pacific as newborn mortality rates decrease and health systems contexts change. There are deficiencies in many aspects of newborn care, including immediate care and care for seriously ill newborns, which contribute substantially to regional newborn morbidity and mortality. We propose a practical quality improvement approach, based on models and standards of newborn care for primary-, district- and referral-level heath facilities and incorporated within existing maternal, newborn and child health programmes. There are examples where such approaches are being used effectively. There is a need to produce more nurses, community health workers and doctors with skills in care of the well and the sick newborn, and there are World Health Organization models of training to support this, including guidelines on emergency obstetric and newborn care and the Pocket Book of Hospital Care for Children. There are also simple data collection and analysis programmes that can assist in auditing outcomes, problem identification and health services planning. Finally, with increased survival rates there are gaps in follow-up care for newborns at high risk of long-term health and developmental impairments, and addressing this will be necessary to ensure optimal developmental and health outcomes for these children.