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.

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.

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.

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.

ERS statement: interventional bronchoscopy in children.

Paediatric airway endoscopy is accepted as a diagnostic and therapeutic procedure, with an expanding number of indications and applications in children. The aim of this European Respiratory Society task force was to produce a statement on interventional bronchoscopy in children, describing the evidence available at present and current clinical practice, and identifying areas deserving further investigation. The multidisciplinary task force panel performed a systematic review of the literature, focusing on whole lung lavage, transbronchial and endobronchial biopsy, transbronchial needle aspiration with endobronchial ultrasound, foreign body extraction, balloon dilation and occlusion, laser-assisted procedures, usage of airway stents, microdebriders, cryotherapy, endoscopic intubation, application of drugs and other liquids, and caregiver perspectives. There is a scarcity of published evidence in this field, and in many cases the task force had to resort to the collective clinical experience of the committee to develop this statement. The highlighted gaps in knowledge underline the need for further research and serve as a call to paediatric bronchoscopists to work together in multicentre collaborations, for the benefit of children with airway disorders.

Research priorities in bronchiectasis: a consensus statement from the EMBARC Clinical Research Collaboration.

Bronchiectasis is a disease of renewed interest in light of an increase in prevalence and increasing burden on international healthcare systems. There are no licensed therapies, and large gaps in knowledge in terms of epidemiology, pathophysiology and therapy. The European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC) is a European Respiratory Society (ERS) Clinical Research Collaboration, funded by ERS to promote high-quality research in bronchiectasis. The objective of this consensus statement was to define research priorities in bronchiectasis. From 2014 to 2015, EMBARC used a modified Delphi process among European bronchiectasis experts to reach a consensus on 55 key research priorities in this field. During the same period, the European Lung Foundation collected 711 questionnaires from adult patients with bronchiectasis and their carers from 22 European countries reporting important research priorities from their perspective. This consensus statement reports recommendations for bronchiectasis research after integrating both physicians and patients priorities, as well as those uniquely identified by the two groups. Priorities identified in this consensus statement provide the clearest possible roadmap towards improving our understanding of the disease and the quality of care for patients with bronchiectasis.

Diagnosing primary ciliary dyskinesia: an international patient perspective.

Primary ciliary dyskinesia (PCD) is a rare genetic disorder characterised by progressive sino-pulmonary disease, with symptoms starting soon after birth. A European Respiratory Society (ERS) Task Force aims to address disparities in diagnostics across Europe by providing evidence-based clinical practice guidelines. We aimed to identify challenges faced by patients when referred for PCD diagnostic testing.A patient survey was developed by patient representatives and healthcare specialists to capture experience. Online versions of the survey were translated into nine languages and completed in 25 countries. Of the respondents (n=365), 74% were PCD-positive, 5% PCD-negative and 21% PCD-uncertain/inconclusive. We then interviewed 20 parents/patients. Transcripts were analysed thematically.35% of respondents visited their doctor more than 40 times with PCD-related symptoms prior to diagnostic referral. Furthermore, the most prominent theme among interviewees was a lack of PCD awareness among medical practitioners and failure to take past history into account, leading to delayed diagnosis. Patients also highlighted the need for improved reporting of results and a solution to the "inconclusive" diagnostic status.These findings will be used to advise the ERS Task Force guidelines for diagnosing PCD, and should help stakeholders responsible for improving existing services and expanding provision for diagnosis of this rare disease.

An Official American Thoracic Society/European Respiratory Society Policy Statement: Enhancing Implementation, Use, and Delivery of Pulmonary Rehabilitation.

RATIONALE: Pulmonary rehabilitation (PR) has demonstrated physiological, symptom-reducing, psychosocial, and health economic benefits for patients with chronic respiratory diseases, yet it is underutilized worldwide. Insufficient funding, resources, and reimbursement; lack of healthcare professional, payer, and patient awareness and knowledge; and additional patient-related barriers all contribute to the gap between the knowledge of the science and benefits of PR and the actual delivery of PR services to suitable patients. OBJECTIVES: The objectives of this document are to enhance implementation, use, and delivery of pulmonary rehabilitation to suitable individuals worldwide. METHODS: Members of the American Thoracic Society (ATS) Pulmonary Rehabilitation Assembly and the European Respiratory Society (ERS) Rehabilitation and Chronic Care Group established a Task Force and writing committee to develop a policy statement on PR. The document was modified based on feedback from expert peer reviewers. After cycles of review and revisions, the statement was reviewed and formally approved by the Board of Directors of the ATS and the Science Council and Executive Committee of the ERS. MAIN RESULTS: This document articulates policy recommendations for advancing healthcare professional, payer, and patient awareness and knowledge of PR, increasing patient access to PR, and ensuring quality of PR programs. It also recommends areas of future research to establish evidence to support the development of an updated funding and reimbursement policy regarding PR. CONCLUSIONS: The ATS and ERS commit to undertake actions that will improve access to and delivery of PR services for suitable patients. They call on their members and other health professional societies, payers, patients, and patient advocacy groups to join in this commitment.

Statement on smoking cessation in COPD and other pulmonary diseases and in smokers with comorbidities who find it difficult to quit.

Chronic obstructive pulmonary disease (COPD), lung cancer, asthma and pulmonary tuberculosis are common pulmonary diseases that are caused or worsened by tobacco smoking. Growing observational evidence suggests that symptoms and prognosis of these conditions improve upon smoking cessation. Despite increasing numbers of (small) randomised controlled trials suggesting intensive smoking cessation treatments work in people with pulmonary diseases many patients are not given specific advice on the benefits or referred for intensive cessation treatments and, therefore, continue smoking.This is a qualitative review regarding smoking cessation in patients with COPD and other pulmonary disorders, written by a group of European Respiratory Society experts. We describe the epidemiological links between smoking and pulmonary disorders, the evidence for benefits of stopping smoking, how best to assess tobacco dependence and what interventions currently work best to help pulmonary patients quit. Finally, we describe characteristics and management of any "hardcore" smoker who finds it difficult to quit with standard approaches.

The impact of chronic cough: a cross-sectional European survey.

PURPOSE: Studies that investigate the impact of chronic cough have largely focused on patients attending secondary care. Our aim was to investigate the opinions of the wider general population across Europe. METHODS: An internet survey was made available in 12 languages on the European Lung Foundation website, between January 2012 and April 2013. RESULTS: Of 1120 respondents from 29 different European countries, 67 % were female, mean age 51 years (SD 15), median cough duration 2-5 years. The majority of respondents reported cough impacted their quality of life, mood and ability to undertake activities. Despite 72 % of respondents having visited their doctor ≥3 times, only 53 % had received a diagnosis. Asthma was the most common diagnosis (23 %). Most respondents reported limited or no effectiveness of medications. 88 % of respondents reported that they would like more information to be available on chronic cough. CONCLUSIONS: Chronic cough has a negative impact on quality of life. Further work is needed to raise awareness, promote management strategies, develop effective treatments and consider the educational and support needs of patients with chronic cough.

Can we identify the prevalence of perinatal mental health using routinely collected health data?: A review of publicly available perinatal mental health data sources in England.

Introduction: Perinatal mental health (PMH) conditions affect around one in four women, and may be even higher in women from some ethnic minority groups and those living in low socioeconomic circumstances. Poor PMH causes significant distress and can have lifelong adverse impacts for some children. In England, current prevalence rates are estimated using mental health data of the general population and do not take sociodemographic variance of geographical areas into account. Services cannot plan their capacity and ensure appropriate and timely support using these estimates. Our aim was to see if PMH prevalence rates could be identified using existing publicly available sources of routine health data. Methods: A review of data sources was completed by searching NHS Digital (now NHS England), Public Health England and other national PMH resources, performing keyword searches online, and research team knowledge of the field. The sources were screened for routine data that could be used to produce prevalence of PMH conditions by sociodemographic variation. Included sources were reviewed for their utility in accessibility, data relevance and technical specification relating to PMH and sociodemographic data items. Results: We found a PMH data 'blind spot' with significant inadequacies in the utility of all identified data sources, making it impossible to provide information on the prevalence of PMH in England and understand variation by sociodemographic differences. Conclusions: To enhance the utility of publicly available routine data to provide PMH prevalence rates requires improved mandatory PMH data capture in universal services, available publicly via one platform and including assessment outcomes and sociodemographic data.

Study protocol for a systems evaluation of an infant mental health service: Integration of 'Little Minds Matter' into the early years system.

Infant Mental Health relates to how well a child develops socially and emotionally from birth to age three. There is a well-established link between parent-infant relationship quality, Infant Mental Health, and longer-term social and emotional development there is a lack of evidence-based interventions that support the parent-infant relationship and/or protect against poor Infant Mental Health. Little Minds Matter is a specialist Infant Mental Health service developed in Bradford (UK) to support parent-infant relationships by providing training and consultation for professionals and direct clinical work to families. The successful implementation of this intervention depends upon how well it becomes embedded within, or integrated into, the early years system. For the purposes of this study, the early years system includes health, social and education services that support child health and development from conception to primary school entry at age five. This study protocol aims to apply a systems approach to evaluate this service and provide a perspective on the process of embedding a complex service within a healthcare system. Multiple methods will be used to investigate embeddedness within the wider early years system. Routinely collected quantitative data about the service will be used to develop a system map showing interaction with related services. Qualitative data will be collected at two time points through interviews with individuals involved in the design and provision of the service, and professionals working within the early years system. Framework analysis will be used to analyse the data inductively and deductively within a systems approach. The findings from this study will provide evidence to inform the ongoing implementation of the service for providers and commissioning bodies. Exploring the application of a systems approach in this clinical context will have application more broadly for researchers evaluating complex interventions and services within a wider system.

Addressing inequalities in the identification and management of perinatal mental health difficulties: The perspectives of minoritised women, healthcare practitioners and the voluntary sector.

Background: Perinatal mental health (PMH) difficulties affect approximately one in five birthing women. If not identified and managed appropriately, these PMH difficulties can carry impacts across generations, affecting mental health and relationship outcomes. There are known inequalities in identification and management across the healthcare pathway. Whilst barriers and facilitators have been identified there is a lack of clarity about how these relate to the avoidable and unfair inequalities experienced by various groups of women. Further research is required to understand how to address inequalities in PMH. Aim: To understand the key factors that enable and hinder access to PMH care for women from minoritised groups across the PMH care pathway, and how these have been affected by the COVID-19 pandemic. Methods: A sequential mixed-methods approach gathered views and experiences from stakeholders in one region in northern England. This included an online survey with 145 NHS healthcare practitioners and semi-structured interviews with 19 women from ethnic minority and/or socio-economically deprived backgrounds who had experienced PMH difficulties, and 12 key informants from the voluntary and community sector workforce. Quantitative data were analysed using descriptive statistics and framework analysis was applied to qualitative data. Findings: Barriers and facilitators were mapped using a socio-technical framework to understand the role of (i) processes, (ii) people (organised as women, practitioners and others), (iii) technology, and (iv) the system as a whole in deepening or alleviating inequalities. Influences that were identified as pertinent to inequalities in identification and management included provision of interpreters, digital exclusion, stigma, disempowerment, distrust of services, practitioner attitudes, data capture, representation in the workforce, narrow rules of engagement and partnership working. Stakeholder groups expressed that several barriers were further compounded by the COVID-19 pandemic. Discussion: The findings highlight the need for change at the system level to tackle inequalities across the PMH care pathway. Four inter-connected recommendations were developed to enable this systems change: building emotional safety between professionals and women; making PMH a part of core healthcare business; increasing cultural competency specific to PMH; and enhanced partnership working.

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.

Communication difficulties reported by patients diagnosed with idiopathic pulmonary fibrosis and their carers: a European focus group study.

This paper explores commonalities in the experience and unmet needs of idiopathic pulmonary fibrosis (IPF) patients and carers in Europe throughout the care pathway, focusing specifically on the unmet communication needs of patients and carers. Four patient organisations/groups in Europe held focus groups (Italy (seven patients and four carers); Belgium (six patients); Ireland (23 patients and 10 carers); and England, UK (five patients and three carers)). A focus group schedule was provided and translated into the language of each focus group by the European Lung Foundation (ELF). Content analysis was conducted by the ELF and verified by the authors of the paper. Three main themes emerged: professional-patient, professional-professional and patient-patient communication. Within these themes, eight priority areas were highlighted by two or more of the focus groups. In addition, 17 suggested action points were identified. Patients and carers in Europe have unmet communication needs, which could be met by specialist physicians and specialist centres providing more effective information and signposting to support services, including support groups and patient organisations.

Patients' perspective on pulmonary rehabilitation: experiences of European and American individuals with chronic respiratory diseases.

Pulmonary rehabilitation benefits people with chronic respiratory diseases, yet few eligible patients enrol. People with chronic lung diseases are often unaware of or lack access to PR. This is an important healthcare disparity that should be addressed. http://ow.ly/2HER30mxLLj.

Attitudes and preferences of home mechanical ventilation users from four European countries: an ERS/ELF survey.

Home mechanical ventilation is increasingly used by people with chronic respiratory failure. However, there are few reports on attitudes towards treatment. A web-based survey in eight languages was disseminated across 11 European countries to evaluate the perception of home mechanical ventilation provision in ventilator-assisted individuals and caregivers. Out of 787 responders from 11 European countries, 687 were patients and 100 were caregivers. 95% of patients and 94% of caregivers were from only 4 countries (Germany, the Netherlands, Italy, Spain). The majority of respondents were male and aged 46-65 years. Obstructive lung diseases were proportionally more represented among respondent patients (46%), and neuromuscular diseases (65%) were more represented among patients of respondent caregivers. About 20% of respondent patients and caregivers were not sure of the modality of ventilation. Different interfaces were used, with a minority of respondents in all countries using invasive home mechanical ventilation by tracheostomy. These results may be useful for healthcare providers and policy makers to improve the quality of patients' daily lives.