Stakeholder engagement in the health policy process in a low income country: a qualitative study of stakeholder perceptions of the challenges to effective inclusion in Malawi.

BACKGROUND: Inclusive engagement in healthcare policies and decision-making is essential to address the needs of patients and communities, reduce health inequities and increase the accountability of the government. In low income countries such as Malawi, with significant health challenges, stakeholder inclusion is particularly important to improve performance and service delivery. The 2017 National Health Plan II (NHP II) and accompanying Health Sector Strategic Plan II (HSSP II) aimed to improve the functioning of the healthcare system. The Ministry of Health for Malawi intended to involve all key health sector stakeholders in their development. This study explores the extent of stakeholder engagement in the health policy process through local level stakeholders' perceptions of their involvement in the NHP II and HSSP II. METHODS: A qualitative study design was used. Interviews were conducted with 19 representatives of organisations operating at the local level, such as CSOs and local government. Open questions were asked about experiences and perceptions of the development of the NHP II and HSSP II. Inductive content analysis was performed. RESULTS: Stakeholders perceived barriers to inclusive and meaningful engagement in the health policy process. Five categories were identified: tokenistic involvement; stakeholder hierarchy; mutual distrust; preferred stakeholders; no culture of engagement. CONCLUSIONS: Serious challenges to the meaningful and equitable engagement of local level stakeholder groups in the health policy process were identified. Issues of trust, accountability and hierarchy in donor-citizen-government relations must be addressed to support stakeholder engagement. Engagement must go beyond tokenism to embed a range of stakeholders in the process with feedback mechanisms to ensure impact from their contributions. Local level stakeholders can be empowered to advocate for and participate in consultation exercises alongside greater top-down efforts to engage stakeholders via diverse and inclusive methods. These issues are not unique to Malawi or to health policy-making.

An approach to identifying young children with developmental disabilities via primary care records.

Background: Preschool aged children with developmental disabilities frequently receive a diagnosis of an indicator of disability, such as developmental delay, some time before receiving a definitive diagnosis at school age, such as autism spectrum disorder. The absence of a definitive diagnosis potentially underestimates the need for support by families with young disabled children. Our aim was to develop a two-part strategy to identify children with probable and potential developmental disabilities before the age of five in primary care records for a UK birth cohort, considering how the identification of only probable or potential developmental disability might also influence prevalence estimates. Methods: As part of a study of the effects of caring for young children with developmental disabilities on mothers' health and healthcare use, we developed a two-part strategy to identify: 1) children with conditions associated with significant disability and which can be diagnosed during the preschool period; and 2) children with diagnoses which could indicate potential disability, such as motor development disorder and developmental delay. The strategy, using Read codes, searched the electronic records of children in the Born in Bradford cohort with linked maternal and child sociodemographic information. The results were compared with national and Bradford prevalence estimates, where available. Results: We identified 83 children with disability conditions and 394 with potential disability (44 children had both a disability condition and an indicator of potential disability). When combined, they produced a developmental disability prevalence of 490 per 10,000 which is above the UK estimate for developmental disabilities in children under five (468 per 10,000) and within the 419-505 per 10,000 prevalence estimated for Bradford (for children aged 0-18). Conclusions: When only conditions diagnosed as developmental disabilities are used for case ascertainment, most of the young children with developmental disabilities likely to be diagnosed at later ages will be missed.

Challenges to effective governance in a low income healthcare system: a qualitative study of stakeholder perceptions in Malawi.

BACKGROUND: All countries face challenging decisions about healthcare coverage. Malawi has committed to achieving Universal Health Coverage (UHC) by 2030, the timeframe set out by the Sustainable Development Goals (SDGs). As in other low income countries, scarce resources stand in the way of more equitable health access and quality in Malawi. Its health sector is highly dependent on donor contributions, and recent poor governance of government-funded healthcare saw donors withdraw funding, limiting services and resources. The 2017 National Health Plan II and accompanying Health Strategic Plan II identify the importance of improved governance and strategies to achieve more effective cooperation with stakeholders. This study explores health sector stakeholders' perceptions of the challenges to improving governance in Malawi's national health system within the post-2017 context of government attempts to articulate a way forward. METHODS: A qualitative study design was used. Interviews were conducted with 22 representatives of major international and faith-based non-government organisations, civil society organisations, local government and government-funded organisations, and governance bodies operating in Malawi. Open questions were asked about experiences and perceptions of the functioning of the health system and healthcare decision-making. Content relating to healthcare governance was identified in the transcripts and field notes and analysed using inductive content analysis. RESULTS: Stakeholders view governance challenges as a significant barrier to achieving a more effective and equitable health system. Three categories were identified: accountability (enforceability; answerability; stakeholder-led initiatives); health resource management (healthcare financing; drug supply); influence in decision-making (unequal power; stakeholder engagement). CONCLUSIONS: Health sector stakeholders see serious political, structural, and financial challenges to improving governance in the national health system in Malawi which will impact the government's goal of achieving UHC by 2030. Stakeholders identify the need for improved oversight, implementation, service delivery and social accountability of government-funded service providers to communities. Eighteen months after the introduction of the policy documents, they see little evidence of improved governance and have little or no confidence in the government's ability to deliver UHC. The difficulties stakeholders perceive in relation to building equitable and effective healthcare governance in Malawi have relevance for other resource-limited countries which have also committed to the goal of UHC.

Repurposing NGO data for better research outcomes: a scoping review of the use and secondary analysis of NGO data in health policy and systems research.

BACKGROUND: Non-governmental organisations (NGOs) collect and generate vast amounts of potentially rich data, most of which are not used for research purposes. Secondary analysis of NGO data (their use and analysis in a study for which they were not originally collected) presents an important but largely unrealised opportunity to provide new research insights in critical areas, including the evaluation of health policy and programmes. METHODS: A scoping review of the published literature was performed to identify the extent to which secondary analysis of NGO data has been used in health policy and systems research (HPSR). A tiered analytical approach provided a comprehensive overview and descriptive analyses of the studies that (1) used data produced or collected by or about NGOs; (2) performed secondary analysis of the NGO data (beyond the use of an NGO report as a supporting reference); and (3) analysed NGO-collected clinical data. RESULTS: Of the 156 studies that performed secondary analysis of NGO-produced or collected data, 64% (n = 100) used NGO-produced reports (mostly to a limited extent, as a contextual reference or to critique NGO activities) and 8% (n = 13) analysed NGO-collected clinical data. Of these studies, 55% (n = 86) investigated service delivery research topics and 48% (n = 51) were undertaken in developing countries and 17% (n = 27) in both developing and developed countries. NGOs were authors or co-authors of 26% of the studies. NGO-collected clinical data enabled HPSR within marginalised groups (e.g. migrants, people in conflict-affected areas), albeit with some limitations such as inconsistent and missing data. CONCLUSION: We found evidence that NGO-collected and produced data are most commonly perceived as a source of supporting evidence for HPSR and not as primary source data. However, these data can facilitate research in under-researched marginalised groups and in contexts that are hard to reach by academics such as conflict-affected areas. NGO-academic collaboration could help address issues of NGO data quality to facilitate their more widespread use in research. The use of NGO data use could enable relevant and timely research in the areas of programme evaluation and health policy and advocacy to improve health and reduce health inequalities, especially in marginalised groups and developing countries.

The Caregiver Health Effects of Caring for Young Children with Developmental Disabilities: A Meta-analysis.

OBJECTIVES: Mothers of school age and older children with developmental disabilities experience poorer health than mothers of typically developing children. This review assesses the evidence for the effect on mothers' health of caring for young children with developmental disabilities, and the influence of different disability diagnoses and socioeconomic status. METHODS: Medline, EMBASE, PsycINFO and CINAHL were searched. Studies measuring at least one symptom, using a quantitative scale, in mothers of preschool children (0-5 years) with and without a diagnosed developmental disability were selected. Random effects meta-analysis was performed, and predictive intervals reported due to high expected heterogeneity. RESULTS: The meta-analysis included 23 estimates of association from 14 retrospective studies for the outcomes of stress (n = 11), depressive symptoms (n = 9), general health (n = 2) and fatigue (n = 1). Caring for a child with a developmental disability was associated with greater ill health (standardised mean difference 0.87; 95% predictive interval - 0.47, 2.22). The largest association was for mixed developmental disabilities (1.36; - 0.64, 3.36) and smallest for Down syndrome (0.38; - 2.17, 2.92). There was insufficient socioeconomic information to perform subgroup analysis. The small number of studies and data heterogeneity limited the precision of the estimates of association and generalizability of the findings. CONCLUSIONS FOR PRACTICE: Mothers of young children with developmental disabilities may have poorer health than those with typically developing children. Research is needed to identify whether the relationship is causal and, if so, interventions that could reduce the negative effect of caregiving.