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Measuring impacts of patient and public involvement and engagement (PPIE): a narrative review synthesis of review evidence.
INTRODUCTION: Patient and public involvement and engagement (PPIE), in its various forms, offers a wide range of potential benefits to research, health services and systems, and to those involved in this collaborative process. As PPIE has expanded over the years, so too have expectations regarding the evaluation of its effects and impacts. METHODS: We conducted a narrative review synthesis of review articles around measurement of PPIE impact - conceptualising 'impact' to include any type of effect on people or processes, both proximate and longer-term. We searched PubMed, Cochrane Library of Systematic Reviews, and CINAHL electronic databases and conducted hand searches. Inclusion criteria comprised: public involvement, reporting impacts of public involvement, and using a review methodology. This yielded 27 review articles based on studies in the UK, US, Canada and Australia. We employed a three-part analysis process: 1) extracting all subcategories of impact reported into Excel (n = 37); 2) combining and categorising this list into primary and subcategories of impact based on thematic analysis; and 3) cross-checking these categories with the original review. RESULTS: Our review of reviews indicates that studies often do not report impacts of PPIE activities and when they do, they report a wide range, with little consistency across studies. We classified four broad types of PPIE impacts on: people (PPIE contributors, researchers, healthcare staff and policymakers), different phases of the research process, services and systems and on PPIE processes themselves. Across these categories, the most commonly documented impacts relate to impacts on PPIE collaborators, including individual empowerment and recovery, on researchers, improving their understanding of and collaboration with people typically excluded from research and on earlier phases of the research process. Studies reported both positive and negative impacts. Methodologically, previous evaluations of PPIE impact predominantly relied on retrospective self-reporting, with little triangulation from other data sources or prospective data collection over time. CONCLUSION: The impacts of PPIE appear to be under- and inconsistently reported. More robust evaluation of PPIE impact, drawing on the broad categories we present, offers opportunities for PPIE contributors, researchers and funders to better understand the effects of these investments
Evaluation of a Hub-and-Spoke Model to Enhance Healthcare Professionals' Practice of Antimicrobial Stewardship (AMS) Programmes in the Volta Region of Ghana.
Background: Antimicrobial resistance (AMR) poses a critical global health challenge, particularly in resource-limited settings. A hub-and-spoke model, decentralising expertise and distributing resources to peripheral facilities, has been proposed as a strategy to enhance the antimicrobial stewardship (AMS) capacity in low- and middle-income countries. Aim: This study sought to understand healthcare professionals' experiences of a hub-and-spoke AMS model in the Volta Region of Ghana and its influence on clinical practice, leadership, and collaborative endeavours to address AMR. Methods: A qualitative descriptive design was adopted. In-depth interviews were conducted with 11 healthcare professionals who participated in the AMS program. Thematic analysis was used to identify key themes related to the knowledge and skills that were gained, clinical and leadership practice changes, capacity building, and challenges. Results: Participants reported an increased awareness of AMR, particularly regarding the scale and clinical implications of antimicrobial misuse. The clinical practice improvements included more judicious prescribing and enhanced adherence to infection prevention and control measures. Many respondents highlighted stronger leadership skills and a commitment to capacity building through AMS committees, multidisciplinary collaboration, and cross-organisational knowledge exchange. Despite resource constraints and logistical hurdles, participants expressed optimism, citing data-driven approaches such as point prevalence surveys to track progress and inform policy. Engagement with hospital management and public outreach were viewed as essential to sustaining AMS efforts and curbing over-the-counter antibiotic misuse. Conclusions: The hub-and-spoke model caused observable improvements in AMS knowledge, clinical practice, and leadership capacity among healthcare professionals in Ghana. While challenges remain, particularly in securing sustainable resources and shifting community behaviours, these findings underscore the potential of network-based programs to catalyse systemic changes in tackling AMR. Future research should explore long-term outcomes and strategies for embedding AMS practices more deeply within healthcare systems and communities
Exploring Service Users' Experiences of a Community-Based Intervention to Improve Follow-Up at Bharatpur Eye Hospital in Nepal: Qualitative Study.
BACKGROUND: Follow-up to eye care services for children, especially in the context of Nepal, is essential for ensuring a continuum of care. Hence, as a continued effort, we designed this study to explore the service users' experience of a community-based intervention to improve follow-up at Bharatpur Eye Hospital (BEH) in Nepal. OBJECTIVE: This study aimed to explore service users' experiences and perceptions of the community-based follow-up intervention for eye care services implemented by BEH in Nepal. METHODS: A qualitative study using an in-depth interview approach was used. Participants were purposively selected for this research study. Participants who were part of a quasi-experimental study conducted to improve follow-up services in BEH and their service catchment area were chosen. Participants who had not attended even a single follow-up visit and participants who attended at least one follow-up were recruited for this qualitative study. Based on the distance from the base hospital and the follow-up status, 65 participants were initially found eligible for the qualitative study. However, only 17 participants were available and consented. Topic guides were developed for the purpose of in-depth interviews specifically for participants who had not attended even the first follow-up visits and those who attended at least one follow-up visit. A total of 2 ophthalmic assistants, who were not a part of the main intervention study, conducted the interviews. RESULTS: In total, 17 service users whose children were receiving services from BEH participated in the qualitative study. We identified 4 key themes that provided invaluable information about the barriers and facilitators to follow-up as well as the experiences (positive or negative) of the participants that need to be considered in any future initiatives to improve follow-up in Nepal. CONCLUSIONS: This study highlights the need for systematic development of interventions to address the unmet need for eye care services in the community through innovative, scalable solutions. As a next step, the BEH team will be working to develop such scalable solutions for Nepal. Such interventions will also need to be optimized for similar settings and countries to meet the goals of universal health coverage, vision 2030, and sustainable development goals worldwide
Feasibility of a Low-Intensity Task-Shared Intervention for Common Mental Disorders in Survivors of Intimate Partner Violence in India: A Mixed Methods Study.
Our mixed-methods study evaluated the acceptability and feasibility of a lay-counselor-delivered low-intensity psychosocial intervention for women who experienced intimate partner violence in India. We found statistically significant improvements in mental health outcomes like depression and anxiety. Participants also reported positive changes in thoughts, behavior, emotional management, relationships, self-care, and daily functioning. The use of lay-counselors offers a scalable solution in resource-limited settings, addressing a critical need in low- and middle-income countries. This approach highlights a novel and effective strategy for supporting IPV survivors in culturally diverse contexts
Corruption and the emergence of a healthcare 'marketplace' in Nigeria's primary health centres: reframing drivers and solutions.
Corruption in the health systems of low- and middle-income countries (LMICs) is fuelled by many factors, including health system failures, practical norms, informal rules, and social networks. Researchers have historically scrutinized these factors in isolation, often failing to grasp the intricate interconnections and the combined manner in which they manifest. In this ethnographic study, we present evidence from Nigeria's healthcare system, where these factors converge, fundamentally reshaping the structure and operation of the healthcare system away from those set out in policy. Our study entailed three months of simultaneous participant observation at six Primary Health Centres in Enugu, Nigeria by four researchers. Following this, we conducted in-depth interviews with healthcare workers and their managers, and focus group discussions with service users. Our findings show that informal payments and rent-seeking, are widespread. Failures to provide basic infrastructure, staff and commodities means that healthcare providers have to use informal means to raise money in order to address these deficiencies. These practices are deeply embedded in reciprocal obligations among staff members, coordinated by groups who collaborate and engage in sustained interactions. Over time, their shared norms and networks are underpinned by informal agreements when and how to charge patients and allocating collected resources. Under this situation, healthcare facilities metamorphose from the ideal of primary health facilities as a setting in which care is provided according to need, into a 'marketplace,' where access to care and health commodities is profoundly shaped by economic imperatives and intricate social processes. The findings of this study suggest that any single "silver bullet" approach, such as solely focusing on norms, and health system failures, is likely to have minimal impact. Instead, policy makers should seek innovative ways through which more equitable access to care can be achieved in the current context
A survey on the use of continuous positive airway pressure in newborn care in Kenya in 2017-2018.
BACKGROUND: Globally, complications of preterm birth are the leading cause of under-5-mortality. Respiratory distress syndrome (RDS) is a common and life-threatening complication among preterm infants. Continuous positive airway pressure (CPAP) is a relatively simple and effective intervention that is recommended for RDS treatment. However, appropriate infrastructure and processes are required to ensure that it is used safely, effectively and sustainably. This study describes how CPAP was used in newborn care in Kenya between 2017-2018. Our aim was to identify enablers, barriers and gaps in CPAP use. METHODS: A cross-sectional survey was carried out across all newborn baby units in Kenya between 2017-2018, as part of a evaluation of CPAP use in newborn care. Descriptive statistics were used to analyse the quantitative data. RESULTS: Twenty-three hospitals across 15 (32%) of the counties in Kenya were providing CPAP in newborn care. The survey was conducted in 19 hospitals, amounting to 83% of all hospitals providing CPAP in newborn care in the country. Sub-county (level 4) and county (level 5) referral had fewer resources (i.e., trained staff, infrastructure and equipment) than the national referral (level 6) and private hospitals. In addition, there was a wide variation in the CPAP devices used and the resources for supporting CPAP use across different hospitals. CONCLUSION: We found access to CPAP for neonates with RDS was inequitable in Kenya. There were also disparities in the availability of resources, personnel, and guidelines to support its implementation. Lack of standardisation of CPAP use in newborn care was especially evident in the public sector. To optimise coverage and standardisation of CPAP use in newborn care in Kenya, our results support ongoing partnerships to strengthen public and private healthcare sectors involving the implementation of strategies to improve infrastructure for newborn care, train and retain staff, and provide additional equipment
Implications of progressive lung damage and post-tuberculosis sequelae for the health benefits of prompt tuberculosis treatment in high HIV prevalence settings: a mathematical modelling analysis.
BACKGROUND: Untreated pulmonary tuberculosis causes ongoing lung damage, which can persist after treatment. Conventional modelling approaches for assessing tuberculosis health effects might not fully capture these mechanisms. We evaluated how tuberculosis-associated lung damage and post-tuberculosis sequelae affect the lifetime health consequences of tuberculosis in high HIV prevalence settings. METHODS: We developed a microsimulation model (computer simulations that reproduce disease natural history and intervention effects for sampled individuals) representing dynamic changes in lung function for individuals evaluated for tuberculosis in routine clinical settings. We parametrised the model with data (from a previously published study) for three African countries with a high burden of tuberculosis and HIV: Uganda, Kenya, and South Africa, and estimated lifetime health outcomes under prompt, delayed, and no tuberculosis treatment scenarios. We compared results to earlier modelling approaches that omit progressive lung damage and post-tuberculosis sequelae. FINDINGS: We estimated a 5·1 years (95% uncertainty interval 3·8-6·4) reduction in life expectancy due to tuberculosis with prompt treatment, 7·7 years (5·5-10·1) with delayed treatment, and 18·5 years (15·5-20·6) with no treatment. Estimated per-person disability-adjusted life-years (DALYs) from tuberculosis were 11·4 years (8·9-14·2) with prompt treatment, 17·1 years (13·1-22·1) with delayed treatment, and 37·7 years (34·3-40·3) with no treatment. Compared with individuals without HIV, individuals with HIV had a greater proportion of tuberculosis-attributable deaths, but fewer life-years lost to tuberculosis. Post-tuberculosis DALYs represented 52·5% of total DALYs with prompt treatment, 42·7% with delayed treatment, and 9·1% with no treatment. Modelling approaches that omit progressive lung damage and post-tuberculosis sequelae underestimated lifetime health losses of tuberculosis by 48-57% and underestimated the benefits of prompt treatment by 45-64%. INTERPRETATION: Delayed initiation of tuberculosis treatment causes greater lung damage and higher mortality risks during and after the disease episode than prompt treatment. In settings with coprevalent tuberculosis and HIV, accounting for these factors substantially increased estimates of the lifetime disease burden and life expectancy loss caused by tuberculosis. These findings imply greater health effects and cost-effectiveness for interventions to prevent tuberculosis and achieve earlier treatment initiation than indicated in previous analytical approaches. FUNDING: US National Institutes of Health
The unintended outcome: a retrospective cross-sectional study using a urine lateral flow assay to detect ART use reveals non-disclosure of taking ART in South Africa's public health system.
INTRODUCTION: Differentiated service delivery (DSD) models for HIV and tuberculosis (TB) care prioritize efficient resource allocation and targeted interventions, and benefit from accurate assessment of patients' antiretroviral therapy (ART) pill-taking status. Accurate ART use identification is essential for ensuring proper care transition services rather than unnecessary initiation. A point-of-care urine tenofovir (TFV) assay may identify undisclosed ART use in settings with high rates of TB and HIV coinfection. METHODS: A cohort of people living with HIV (PWH) presenting for routine care, including newly diagnosed and those returning to care, and reporting no ART use within 90 days, was enrolled in a clinic-based cross-sectional study of TB prevalence which tested for TB using sputum and urine-based TB tests in two clinics in KwaZulu-Natal, South Africa. CD4 counts were determined at the time of ART initiation, per national guidelines. A novel urine-based lateral flow assay (LFA) which detects TFV ingested within the past 4-7 days was used to assess ART use from thawed urine samples, which were collected concurrently with the self-report assessment. Conditional logistic regression models assessed predictors of ART non-disclosure. RESULTS: Between 12/2021 and 5/2024, 404 PWH (40% male) reporting no recent ART use presented for ART initiation. TB testing identified 14 (3%) PWH with undiagnosed TB. Seventy-nine (20%) had detectable TFV in urine indicating undisclosed ART use, with a median CD4 count of 466 cells/mm3 (IQR 277-625) compared to 322 cells/mm3 (IQR 175-490, p = 0.001) in those without undisclosed ART use. In a multivariable model, undisclosed ART use was associated with older age, rural clinic site, higher CD4 count and having active TB, but not with gender, education or employment. CONCLUSIONS: Among people presenting for HIV treatment initiation, 20% had evidence of ART use within 4-7 days by TFV urine LFA testing. Integration of point-of-care urine TFV assays into DSD models of HIV care may support providers to engage PWH about treatment challenges, address potential barriers to disclosure and facilitate seamless transfers between clinics. If successful, this strategy may reduce duplicative care entries and promote more efficient use of resources
Towards equitable partnerships in global health research: experiences from Ethiopia, Uganda, Lao PDR and Vietnam.
Equitable partnerships in global health research can counteract power imbalances in this field. Theoretical perspectives have been provided on equitable global health partnerships, but there are few reports from researchers actively engaged in such partnerships. This article departs from the experiences of four long-term global health research partnerships, two in Africa and two in Asia. It describes the challenges in enhancing an equitable research partnership and how these were addressed. The examples illustrate that funders can play a pivotal role in counteracting power imbalances by assigning leadership roles and directing primary funding to institutions where the research occurs. Such a transition requires adaptations and a new mindset on both sides. Embedded research capacity enhancement, part of all four partnership examples, is essential in correcting power imbalances. Capacity enhancement should preferably include enhancing the broader research ecosystem within the partner university, across academic institutions in the country or beyond. The development of mutual trust and respect takes time and requires long-term engagement, transparency in budgeting, project planning and all steps of the research process. Reciprocity in learning is important for all partners. It may include twinning of research students, joint degrees and efforts to bring research findings into policy and practice in all partner contexts. The partnership examples illustrate the achievements and challenges in bringing new research evidence into policy and practice, where early involvement and continuous buy-in by policymakers are crucial
Feasibility and effectiveness of tailored interventions for two populations at high-risk of malaria in Senegal: Koranic school children and gold miners.
Senegal has made significant progress in reducing the malaria burden over the last decade. However, malaria remains a major cause of morbidity in some regions and key challenges exist among high-risk populations who have high exposure to mosquitos, but low coverage and use of vector control measures and limited access to healthcare. Two identified high-risk populations are goldminers and talibés (Koranic school students). We conducted a controlled pre/post survey to measure the impact of targeted malaria interventions, including expansion of active community case management and distribution of LLINs, on reported LLIN usage and Plasmodium falciparum infection prevalence at mining sites and Koranic schools (daaras) during the high transmission season in Senegal. We randomly assigned four health facility catchment areas in Kaolack (a city with many daaras) and four in Saraya (a district with gold mining sites) to intervention or control groups. Surveys were conducted pre (Oct 2021; n = 1740 talibés and gold miners) and post (Feb 2022; n = 2200) delivery of the intervention package to assess intervention coverage and infection prevalence by rapid diagnostic test and qPCR. We compared infection prevalence and self-reported LLIN usage, by group and arm, between the two time periods using a difference in difference framework with binomial generalized linear mixed models. Among the talibés, the package of interventions was associated with an adjusted 12.6-percentage point relative reduction in RDT-derived malaria prevalence (p < 0.05, adjusted risk difference: -12.6, 95% CI: -2.7, -22.4) and an adjusted 44.0-percentage point increase in reported prior night net use (p < 0.001, aRD: 44.0, 95% CI: 36.3, 51.6) in the intervention group compared to the counterfactual. However, among the gold miners there was no measured association between the package of interventions and these outcomes. While there was high acceptability in both groups, interventions should be tailored to address high mobility amongst gold miners and maximize impact