The Institute for Global Health and Development
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Item FROM SCOPING TO SCALING: COLLABORATIVE INDIVIDUAL PATIENT DATA PLATFORMS FOR NEGLECTED INFECTIOUS DISEASES: A thesis submitted in partial fulfilment of the requirements for the degree of Doctor of Philosophy [PhD by publication](2025-10) Maguire, Brittany JaneThis thesis presents the rationale and theoretical context for a portfolio of published work examining the clinical study landscape across five different neglected and poverty-related diseases (NPRDs). It critically analyses the limitations of traditional aggregate meta-analysis for synthesising evidence for these diseases, demonstrating how challenges such as limited volume of trials and enrolled participants, methodological heterogeneity and inconsistent reporting necessitate alternative approaches. Meta-analysis of individual patient data (IPD) is proposed as an alternative; however, access to IPD raises legal, ethical, and technical barriers, which I critically examine, drawing on the experiences gained through stakeholder engagement. I engaged with the disease specific research communities to assess the feasibility of building global collaborative data platforms which can provide solutions to the many challenges of sharing IPD. The common difficulties identified in my publications across the NPRDs, together with the limited global attention, funding, and resources available, strongly reinforced the need for a unified data-sharing infrastructure to enable economies of scale. My work directly informed the evolution of the Infectious Diseases Data Observatory (IDDO) Roadmap, a framework of tools, templates, and resources to streamline platform scoping and development, reduce duplication, and adapt processes efficiently to new disease areas. I also demonstrate how systematic review outputs from my publications evolved into dynamic, openaccess tools that enhance the discoverability of IPD and promote data-sharing. I describe the development of a research community consensus-driven process for generating research agendas that enable the meaningful re-use of IPD to address critical knowledge gaps in these under-researched disease areas. My contribution helped shape and operationalise the vision of IDDO as a researcher-driven initiative to build data platforms, supporting the identification, collation, and harmonisation of IPD to promote meaningful data re-use and advance the treatment and control of neglected infectious diseases.Item FAMILIES OF CARE AND CONNECTION: A RELATIONAL EXPLORATION OF HOW REFUGEES NAVIGATE STRUCTURAL CONSTRAINTS TO INTEGRATION IN THE UK: A critical appraisal submitted in fulfilment of the requirements for the degree of PhD by Publication (Retrospective)(Queen Margaret University, Edinburgh, 2025-10) Baillot, HelenDrawing on data from three inter-related studies, the four papers considered in this critical appraisal foreground the role played by social connections – relationships with other people, organisations and statutory bodies – in integration. My central argument is that family and family-like relationships are critical to refugees’ experiences of navigating new systems and structures in countries of settlement. These relationships are defined, developed and sustained through practices of care. I therefore position both care and family as central vectors in integration and as sites where refugees are agentive decision-makers shaping their own integration trajectories. Empirically I call for researchers and practitioners to move away from individualistic notions of integration to fully incorporate the family and the care that flows through family-like relationships into the design and delivery of research and practice. Conceptually, I outline the ways in which this process of incorporation moves us away from integration and towards an alternative feminist post-migration ecological framework, within which orientations and practices of care play a crucial role.Item Technology is nothing, the terrain is everything: Factors influencing the implementation of point of care testing for Malaria, Human Immunodeficiency Virus (HIV) and Tuberculosis within East Africa.(Queen Margaret University, Edinburgh, 2025) Willetts, AnniePoint-of-care testing is a central strategy for controlling the infectious diseases Malaria, Human Immunodeficiency Virus (HIV) and Tuberculosis (TB), especially in low and middle-income countries where access to laboratories is scarce. However, its routine implementation into frontline diagnostic practices remains inadequate to meet global targets. This study explored the factors influencing the implementation of malaria, HIV, and TB point-of-care (POC) testing by frontline health workers in primary healthcare settings in a rural county in Coastal Kenya. Adopting a pragmatic philosophical lens, this mixed-methods study drew on Normalisation Process Theory to explore how health providers implemented these POC testing interventions and how they became embedded in routine practice. Frontline health providers participated in a cross-sectional facility survey of 40 public and private primary health facilities, 11 semi-structured interviews, and 7 focus group discussions, providing a comprehensive understanding of the broad context and the in-depth experiences involved in implementing each POC testing process. Descriptive analysis of the survey data was performed using the statistical computing platform R. The qualitative data were analysed thematically using Ritchie & Spencer’s (1994) Social Framework Analysis Approach, with NVivo Version 11 software assisting in the management and systematic analysis process. Applying Cresswell's Convergent Mixed Methods Approach, the datasets were merged to provide a more comprehensive understanding of each POC testing process. The study identified three overarching contextual factors shaping the implementation of POC testing: the capacity to provide laboratory services, the value attributed to patient care and health providers’ work, and access to a supportive network, regardless of whether the POC testing focused on malaria, HIV or TB. In conclusion, the study highlights the dedication and resourcefulness of health providers who, despite the constraints typical of low and middle-income countries, work innovatively to embed the POC testing processes into routine diagnostic practices to enhance patient care.Item STRATEGIES TO SUPPORT COMMUNITY HEALTH WORKERS IN THE FRAGILE AND CONFLICT-AFFECTED BUEA HEALTH DISTRICT, CAMEROON(Queen Margaret University, Edinburgh, 2025-05) ALINEDOH, CARLSON MBI NKWAINCommunity Health Workers (CHWs) have been acknowledged as critical in providing essential health services, especially within under-resourced health systems and fragile contexts. There has been renewed interest in CHWs in recent years in relation to achieving universal health coverage due to their unique position in the community and their ability to link communities and the health system. However, the best way to optimise CHW programmes and support CHWs is debatable. The optimisation of CHW programmes is particularly relevant in urban, fragile and conflict-affected settings (FCAS), such as Buea Health District in western Cameroon, where challenges CHWs face are exacerbated by the unstable context and their needs are dire. At the same time, there is a dearth of evidence and research to guide policies and practices. This study seeks to explore strategies to support CHWs in the Buea Health District by understanding the current functioning and challenges of CHW programmes, how individual CHWs and their managers cope with and respond to shocks and uncertainty, and their views on the preferred support. Employing a mixed-methods approach, this study integrates key informant interviews (16) with CHW programme managers, supervisors, and community representatives alongside four focus group discussions with CHWs in the Buea Health District. In addition, participatory ranking exercises facilitated quantitative data collection, highlighting preferred support strategies from the CHWs’ perspective. Finally, the work-life histories (5) of selected CHWs were documented to capture their experiences before and during the armed conflict in the Anglophone Regions of Cameroon. The findings of this research highlight the lived experiences and challenges that CHWs encountered, including insecurity, which sometimes posed a risk to life, mistrust from the community, especially during the COVID-19 pandemic and population displacement. Some of these challenges, such as population displacement, eventually led to expanding roles for CHWs and a shortage of CHWs. Some of the coping mechanisms employed by CHW programme managers involved community engagement with local leaders, recruitment of temporary CHWs and remote supervision of CHWs. Overall, the analysis points to CHW's support strategies, such as compensation and benefits, operational support and work environment, and recognition and status for the CHWs, which are preferred strategies to support CHWs in the Buea Health District. These findings have significant implications when designing and implementing CHWs programmes and support packages for CHWs. Stressing the relevance of context-specificity in approaches to CHW programming, the study proposes and applies a framework to support CHWs in FCAS, which intersects the CHW programme features, the local context, and the individual characteristics of the CHWs. Considering the intersection of these three variables would inform effective CHW programme designs and support packages that are sensitive and tailored to the unique characteristics of CHWs and their programmes in different settings. It also has implications for the design of agile CHW programmes that are responsive to the rapidly changing nature of fragile and conflict-affected settings and that cater to the well-being of CHWs in such settings to ensure improved CHW motivation, performance, and retention, as well as improved community health outcomes.Item UNDERSTANDING THE ROLE OF INFORMAL HEALTHCARE PROVIDERS IN PROVIDING NON-COMMUNICABLE DISEASE CARE IN SIERRA LEONE(Queen Margaret University, Edinburgh, 2025-03-12) Idriss, Ayesha SattaNon-communicable diseases (NCDs) present a significant and increasing challenge to global health, with particularly severe consequences for Sierra Leone's healthcare system. This study explores the critical yet under-explored role of Informal Health Providers (IHPs), such as traditional healers, herbalists, and drug peddlers, in managing NCDs within a resource-constrained context. IHPs frequently serve as the preferred healthcare provider for individuals with NCDs, especially in underserved communities, due to their accessibility and the co-existence of formal and informal healthcare providers. Despite their relatively more widespread presence, the contributions of IHPs are often marginalized within the biomedical framework of Sierra Leone’s health policies. This research seeks to examine this gap by providing a comprehensive understanding of IHPs' utilization, the factors influencing their services, and the implications for healthcare delivery. It also examines the interactions between IHPs and the formal healthcare system, aiming to align their roles to better support the achievement of Universal Health Coverage (UHC) in Sierra Leone The study was conducted across six diverse communities in Sierra Leone and sought to understand healthcare-seeking behaviours and the role of Informal Health Providers (IHPs) in managing non-communicable diseases (NCDs), such as diabetes and hypertension. The research employed a mixed-methods approach, utilizing six focus group discussions (FGDs) with various community stakeholders and conducting 42 indepth interviews (IDIs). These interviews were carefully structured to capture a broad range of perspectives. The IDIs involved 18 IHPs, 12 patients with diabetes or hypertension (or their caregivers), and 12 formal healthcare providers, providing a comprehensive understanding of healthcare dynamics within the pluralistic system of Sierra Leone. The analysis was conducted using the NVivo 11® software, which supported the coding and organization of qualitative data. Through this tool, the study explored the key themes related to healthcare-seeking patterns, specifically identifying who community members sought care from, why IHPs were utilized, and the challenges and opportunities surrounding NCD care provision. The research illuminates the complex socio-cultural and economic factors that influence healthcare decisions, highlighting the reasons why many patients prefer IHPs for managing chronic conditions despite the availability of formal healthcare services. The study also explores the interactions between formal and informal healthcare systems, assessing how the two sectors either complement or conflict with one another in providing care for NCDs. The analysis categorizes IHPs into traditional healers, herbalists, and drug peddlers, each offering different scopes of practice, skills, and interventions. Traditional healers and herbalists, regarded as trusted figures within their communities, blend traditional remedies with biomedical treatments, while drug peddlers provide quick access to medications, though often without formal diagnostic procedures. Despite their different approaches, all face challenges related to limited resources, low incomes, and lack of formal recognition, which hinder the quality and reach of NCD care. These challenges are compounded by the shortcomings of Sierra Leone's formal healthcare system, including medication shortages, resource constraints, and patient dissatisfaction, which push many individuals towards IHPs despite the risks involved. The study reveals that the informal healthcare sector operates in parallel with the formal system, with occasional interactions but little structured collaboration. Notably, some IHPs informally refer patients to formal providers, and certain drug peddlers seek advice from healthcare workers. However, these interactions remain sporadic and unregulated. The research advocates for a more integrated approach, where collaboration between IHPs and formal health providers could strengthen the healthcare system’s capacity to address NCDs. Recognizing the complementary strengths of both sectors can improve patient outcomes by enhancing service Availability, Accessibility, Acceptability, and Quality (AAAQ). The study’s findings have broader implications for health policy in Sierra Leone and other low and middle-income countries (LMICs) where informal healthcare systems play a critical role. The research highlights the urgent need for policy reforms that align the role of IHPs within the national healthcare system. Key recommendations include strengthening regulatory frameworks to ensure safe and effective care, simplifying licensing processes, providing regular training for IHPs, and fostering stronger partnerships between IHPs and formal healthcare providers. Additionally, public awareness campaigns are necessary to inform communities about the roles of IHPs and promote informed healthcare-seeking behaviours. These steps are crucial for enhancing the overall quality of NCD care in Sierra Leone, particularly in underserved areas, and for aligning healthcare delivery with the broader goal of Universal Health Coverage (UHC).Item EVALUATION OF NARRATIVE PRACTICES INCLUDING TREE OF LIFE TO DEVELOP THE EMOTIONAL RESILIENCE OF REFUGEE YOUNG PEOPLE AND FAMILIES(Queen Margaret University, Edinburgh, 2024-10) Hughes, GillianAs the global migration crisis gathers pace, the severe emotional challenges inherent in forced migration emphasises the urgent need for effective mental health support for refugee communities. This thesis examines how to develop the emotional resilience of refugee children, young people, and their parents using strength-based collective narrative methodologies, including the ‘Tree of Life’ (ToL) and adapted versions. This work offers a response to critique western psychological models which, it is argued, are culturally limited and based on narrow conceptualisations of resilience. Four studies evaluating narrative interventions for refugee youth and their families are reviewed - within UK statutory mental health services and the contrasting context of an unofficial refugee camp in France. Drawing on constructivist and critical realist paradigms, mixed methods and practice-based evidence are used to identify outcomes reported by refugees which are likely to promote resilience. These included the development of self-confidence and positive self-identity; improvement in social relationships and connection with community; and a clearer sense of purpose and hope for the future. These findings challenge the predominant view of resilience embedded in western psychotherapy models, which focus on directly addressing symptoms of trauma with individuals. Narrative therapy moves beyond this medicalisation of mental health by positioning people as survivors who have resources, skills, and agency in their own recovery to build resilience. It emphasises a non-expert and collaborative stance which honours culturally determined views of healing through social connection and mutual support. This thesis poses timely and pressing questions about how individuals who have experienced extreme adversity and abuse are supported. As an intervention that does not rely on the expertise of highly trained professionals, narrative practices and specifically ToL are particularly relevant in the current UK context of diminishing resources and increasing need and may translate to humanitarian contexts, although this warrants further research.Item “KILLING HOPE” REFUGEE MEN’S STRUGGLE TO INTEGRATE AND EXPERIENCE A SENSE OF BELONGING IN IRELAND(Queen Margaret University, Edinburgh, 2024-05-08) Blaney, Michael JamesThe aim of this study was to investigate the role that work plays in the integration of men who had come through the Direct Provision (DP) system in the Republic of Ireland. Five focus groups and ten one-to-one interviews were conducted over a five-month period in 2018 in Ireland. The Indicators of Integration Framework (IoI) was used to analyse the data. The men came as outsiders but carried hope of beginning a new life. While they were in DP their outsider status remained. During the time of the fieldwork in 2018, the bulk of the cohort remained outsiders inhabiting the margins of Irish society. DP had a lasting and detrimental effect on the men. This is evidenced by the constant referral back to DP throughout the interview sessions. Even when the conversation was steered towards work and the future, the men consistently returned to speaking about DP. It left the men with a sense of shame, regret and continuing frustration. They felt the DP system had tainted them and they considered that it impaired their ability to find full-time work and thereby settle and integrate into the community. Even after receiving the right to live and work in Ireland, they perceived they were discriminated against and therefore remained outsiders. Because they were unable to find steady work, they constantly struggled to provide for themselves and their family. The lack of work undermined their self-reliance and sense of empowerment that doing manly work would have provided for their sense of masculinity. Integration is a two-way process, and it has been shown that the refugees are keen to integrate; however, the men received little assistance as they attempted to transition to lives outside DP and to integrate into Irish society. Work is important to the men’s masculinity but in isolation from other domains of the IoI, work offers no more or no less chance to facilitate integration.Item PROMOTING HEALTH SYSTEMS RESILIENCE IN THE FRAGILE CONTEXT OF NORTHERN GHANA: A STUDY OF COMMUNITY-BASED HEALTH PLANNING AND SERVICES (CHPS) EFFECTIVENESS(Queen Margaret University, Edinburgh, 2024-05-08) Azasi, EstherIn 1999, the government of Ghana adopted the Community-based Health Planning and Services (CHPS) programme as a national policy. It then launched a scaling-up initiative in 2000 to support its Universal Health Care (UHC) agenda. Since its adoption, CHPS has significantly contributed to health service delivery in Ghana, such as improved family planning and immunization coverage. Despite these gains, however, critical implementation gaps persist. Doorstep services and volunteer support, necessary for supporting population health and family planning in marginalised communities, continue to diminish and CHPS scale-up in fragile settings such as the Northern region of Ghana, where poverty is high and health indicators relatively low, is slow. This research investigated the factors constraining the implementation and effectiveness of CHPS in the fragile context of the Northern region of Ghana using a mixed-methods research methodology. Data collection was completed in three distinct stages, comprising 1) a review of the district health information management system (DHIMS) data; 2) key informant interviews and focus group discussions (FGDs) with CHPS stakeholders at the national, regional, district, sub-district, CHPS and community levels; and 3) participatory research using group model building (GMB) in the Kumbungu and Gushiegu districts of the former Northern region. Findings identify that the Ghanaian Government is the main contributor to CHPS infrastructure. However, nearly all participating district facilities were ill-equipped and did not have adequate equipment and medicines owing to lapses in central government funding and National Health Insurance Scheme (NHIS) reimbursement challenges. As a result, there was a general perception of neglect among community members. The participatory research findings conclude that CHPS implementation was confronted by inadequate funding to support the programme’s implementation, poor community engagement and support, and diminished health worker capacity owing to gaps in training, logistics, equipment, and infrastructure. These are further compounded by the drivers of fragility resulting from high poverty levels and a vicious cycle of debt servicing. To mitigate the identified barriers, stakeholders during the study developed a set of interventions aimed at improving CHPS effectiveness. Feedback interviews twelve months after the GMBs showed good progress for interventions targeting health worker capacity, logistics management and community engagement. Comparatively, there was more progress for community engagement interventions than interventions relating to increasing political commitment and funding. Beyond identifying the enablers for CHPS effectiveness, this study supports the argument that the concept of fragility reaches beyond situations of conflict and disasters to include systemic challenges, such as the failure of governments to provide adequate resources to foster the smooth delivery of basic health services. This is particularly so in the context of this research where funding for health services is mainly centralised in a decentralised country. Comparatively, the community engagement interventions had more progress than the interventions for increasing political commitment and funding. In poor and marginalised settings, effective and sustained community engagement can bridge resource gaps, empower users to demand accountability from officials and contribute to resilient health systems. Using the GMB systems thinking methodology presented a holistic approach to understanding the systemic barriers to CHPS implementation and identified enablers that can minimise their impact on the programme. This approach of bringing together community members, health workers and policymakers on a shared platform was particularly appreciated by community members who seldom share a common platform with government officials in matters of social discourse.Item A COLLABORATIVE CARE MODEL FOR PERINATAL MENTAL HEALTH CARE IN SIERRA LEONE(Queen Margaret University, Edinburgh, 2023-12-13) Bah, Abdulai JawoThis study explored idioms of distress and explanatory models for perinatal psychological distress, developed a reliable and validated screening tool, and culturally adapted a problem-solving and behavioural activation intervention. Based on the proposition of the biopsychosocial vulnerability distress and outcome model, I applied mixed methods research in three phases of the study to (1) understand how pregnant women and new mothers experience and express perinatal psychological distress, their coping strategies, and their help-seeking behaviour (2) develop and validate a ten-item screening tool for perinatal psychological distress and use it to assess the prevalence of and risk factors for perinatal psychological distress, and (3) culturally adapt a problem solving and behavioural activation intervention for these pregnant women and new mothers. The ethnographic phase showed women use their hearts and (heads, minds, and brains) to express their emotions and thoughts, respectively. Thinking too much and stress were the most frequently mentioned symptoms. Their distress was related to marital or partner disharmony, gender norms, problems with in-laws, poverty, ill health, and a lack of basic amenities. They consulted religious leaders, herbalists, friends, neighbours, and family members for help for the most part. Their coping strategies included prayers, sleeping, listening to music, and sometimes alcohol to forget about their problems. During the tool development phase, we developed a ten-item tool and established a cut-off point at eight using an emic-etic approach. In the survey phase, we recruited 420 participants and measured antenatal and postnatal psychological distress prevalence of 208 (55.3%) and 212 (64.2%), respectively. Hunger, insult or rude treatment from nurses during antenatal care, ill health, and hostile in-laws were found to be independent predictors of antenatal psychological distress. Furthermore, postnatal psychological distress was independently predicted by having an unfaithful partner, inter-partner violence, ill health, and hunger. However, an income-generating activity was found to be protective for both pregnant women and new mothers. During the intervention phase, using a mixed method approach, 39 perinatal women (control = 19, intervention = 20) were randomly allocated at the community level to culturally adapted problem solving and behavioural activation interventions and a control group. The effectiveness, feasibility, and acceptability of these interventions were explored. Primary outcomes included were psychological distress and functional capacity, which were assessed at baseline, after two weeks, and at the end of the 4-week period. The results showed a reduction in symptoms with a moderate effect size (Cohen’s d = 0.40) and an increased function with regards to their daily tasks. The intervention was deemed feasible and acceptable by the laywomen in the community that delivered the intervention as well as the pregnant women and new mothers. The study identified idioms of distress and explanatory models that can be used to improve communication during clinical encounters between perinatal women and healthcare workers, which will decrease stigma and increase engagement with services. The newly developed tool can be used to screen perinatal women into services and assess their response to these services over time. The study also showed that PST is likely to be feasible, acceptable and effective. There is a need to do further studies using a fully powered randomised control trial to demonstrate effectiveness and to understand how this intervention can be integrated into the primary health care and scaled up nationwide.Item ANTENATAL CARE EQUITY & SOCIAL EQUALITY FOR WOMEN WITH FEMALE GENITAL MUTILATION (FGM) IN SCOTLAND: A MULTI-STAKEHOLDER VIEW(Queen Margaret University, Edinburgh, 2023-10-25) Di Rosa, Amanda I.This thesis describes a case study of an NHS Scotland antenatal care pathway for women with female genital mutilation (FGM), and includes recommendations for the field of antenatal FGM management. Over the last decade, reports of substandard antenatal FGM management from a rapidly growing population of affected women have increased demands for just and equitable healthcare. Consequently, in 2015, a health board in the central belt of Scotland established a multidisciplinary FGM management programme. To determine the impact of this programme on antenatal care equity and social equality for women with FGM its guidelines, interviews with community midwives (CMWs), FGM specialists, and women with FGM were conducted. The findings were analysed using critical communicative methodology (CCM). The findings on the development, organisation, and delivery of the pathway demonstrate the transformative impact of multidisciplinary resources for FGM management and support on equitable antenatal care access when embedded into routine antenatal policies and practices. The findings also show how the absence of robust monitoring and evaluation processes enables contested practices and limits care equity for non-pregnant women with FGM. Novel contributions of this study link social and emotional FGM training to reciprocal improvements in confidence, trust, and communication between CMWs and women with FGM. FGM specialists who empower women to advocate for themselves and their relationship with the practice of FGM are also found to be central to the delivery of sensitive, relevant, and person-led antenatal care. Furthermore, the interdisciplinary implications of this study offer relevant insight for research, development, and service provision beyond Insight. Most notably, until unjust educational and financial health system policies are challenged, experiences of unresolved intersectional discrimination will continue to disproportionately disadvantage migrant women with FGM.