Layered vulnerability and researchers' responsibilities: learning from research involving Kenyan adolescents living with perinatal HIV infection.

BACKGROUND: Carefully planned research is critical to developing policies and interventions that counter physical, psychological and social challenges faced by young people living with HIV/AIDS, without increasing burdens. Such studies, however, must navigate a 'vulnerability paradox', since including potentially vulnerable groups also risks unintentionally worsening their situation. Through embedded social science research, linked to a cohort study involving Adolescents Living with HIV/AIDS (ALH) in Kenya, we develop an account of researchers' responsibilities towards young people, incorporating concepts of vulnerability, resilience, and agency as 'interacting layers'. METHODS: Using a qualitative, iterative approach across three linked data collection phases including interviews, group discussions, observations and a participatory workshop, we explored stakeholders' perspectives on vulnerability and resilience of young people living with HIV/AIDS, in relation to home and community, school, health care and health research participation. A total of 62 policy, provider, research, and community-based stakeholders were involved, including 27 ALH participating in a longitudinal cohort study. Data analysis drew on a Framework Analysis approach; ethical analysis adapts Luna's layered account of vulnerability. RESULTS: ALH experienced forms of vulnerability and resilience in their daily lives in which socioeconomic context, institutional policies, organisational systems and interpersonal relations were key, interrelated influences. Anticipated and experienced forms of stigma and discrimination in schools, health clinics and communities were linked to actions undermining ART adherence, worsening physical and mental health, and poor educational outcomes, indicating cascading forms of vulnerability, resulting in worsened vulnerabilities. Positive inputs within and across sectors could build resilience, improve outcomes, and support positive research experiences. CONCLUSIONS: The most serious forms of vulnerability faced by ALH in the cohort study were related to structural, inter-sectoral influences, unrelated to study participation and underscored by constraints to their agency. Vulnerabilities, including cascading forms, were potentially responsive to policy-based and interpersonal actions. Stakeholder engagement supported cohort design and implementation, building privacy, stakeholder understanding, interpersonal relations and ancillary care policies. Structural forms of vulnerability underscore researchers' responsibilities to work within multi-sectoral partnerships to plan and implement studies involving ALH, share findings in a timely way and contribute to policies addressing known causes of vulnerabilities.

A scoping review of ethics review processes during public health emergencies in Africa.

BACKGROUND: The COVID-19 pandemic forced governments, multilateral public health organisations and research institutions to undertake research quickly to inform their responses to the pandemic. Most COVID-19-related studies required swift approval, creating ethical and practical challenges for regulatory authorities and researchers. In this paper, we examine the landscape of ethics review processes in Africa during public health emergencies (PHEs). METHODS: We searched four electronic databases (Web of Science, PUBMED, MEDLINE Complete, and CINAHL) to identify articles describing ethics review processes during public health emergencies and/or pandemics. We selected and reviewed those articles that were focused on Africa. We charted the data from the retrieved articles including the authors and year of publication, title, country and disease(s) reference, broad areas of (ethical) consideration, paper type, and approach. RESULTS: Of an initial 4536 records retrieved, we screened the titles and abstracts of 1491 articles, and identified 72 articles for full review. Nine articles were selected for inclusion. Of these nine articles, five referenced West African countries including Liberia, Guinea and Sierra Leone, and experiences linked to the Ebola virus disease. Two articles focused on South Africa and Kenya, while the other two articles discussed more general experiences and pitfalls of ethics review during PHEs in Africa more broadly. We found no articles published on ethics review processes in Africa before the 2014 Ebola outbreak, and only a few before the COVID-19 outbreak. Although guidelines on protocol review and approval processes for PHEs were more frequently discussed after the 2014 Ebola outbreak, these did not focus on Africa specifically. CONCLUSIONS: There is a gap in the literature about ethics review processes and preparedness within Africa during PHEs. This paper underscores the importance of these processes to inform practices that facilitate timely, context-relevant research that adequately recognises and reinforces human dignity within the quest to advance scientific knowledge about diseases. This is important to improve fast responses to PHEs, reduce mortality and morbidity, and enhance the quality of care before, during, and after pandemics.

Respecting relational agency in the context of vulnerability: What can research ethics learn from the social sciences?

Despite advances in theory, often driven by feminist ethicists, research ethics struggles in practice to adequately account for and respond to the agency and autonomy of people considered vulnerable in the research context. We argue that shifts within feminist research ethics scholarship to better characterise and respond to autonomy and agency can be bolstered by further grounding in discourses from the social sciences, in work that confirms the complex nature of human agency in contexts of structural and other sources of vulnerability. We discuss some of the core concepts and critiques emerging from the literature on women and children's agency in under-resourced settings, highlighting calls to move from individualistic to relational models of agency, and to recognise the ambiguous, value-laden, and heterogeneous nature of the concept. We then draw out what these conceptual shifts might mean for research ethics obligations and guidance, illustrating our analysis using a case vignette based on research ethics work conducted in South Africa. We conclude that if research practices are to be supportive of agency, it will be crucial to scrutinise the moral judgements which underpin accounts of agency, derive more situated definitions of and responses to agency, and enable people and participants to influence these based on their own experiences and self-perceptions.

Examining the influence of health sector coordination on the efficiency of county health systems in Kenya.

BACKGROUND: Health systems are complex, consisting of multiple interacting structures and actors whose effective coordination is paramount to enhancing health system goals. Health sector coordination is a potential source of inefficiency in the health sector. We examined how the coordination of the health sector affects health system efficiency in Kenya. METHODS: We conducted a qualitative cross-sectional study, collecting data at the national level and in two purposely selected counties in Kenya. We collected data using in-depth interviews (n = 37) with national and county-level respondents, and document reviews. We analyzed the data using a thematic approach. RESULTS: The study found that while formal coordination structures exist in the Kenyan health system, duplication, fragmentation, and misalignment of health system functions and actor actions compromise the coordination of the health sector. These challenges were observed in both vertical (coordination within the ministry of health, within the county departments of health, and between the national ministry of health and the county department of health) and horizontal coordination mechanisms (coordination between the ministry of health or the county department of health and non-state partners, and coordination among county governments). These coordination challenges are likely to impact the efficiency of the Kenyan health system by increasing the transaction costs of health system functions. Inadequate coordination also impairs the implementation of health programmes and hence compromises health system performance. CONCLUSION: The efficiency of the Kenyan health system could be enhanced by strengthening the coordination of the Kenyan health sector. This can be achieved by aligning and harmonizing the intergovernmental and health sector-specific coordination mechanisms, strengthening the implementation of the Kenya health sector coordination framework at the county level, and enhancing donor coordination through common funding arrangements and integrating vertical disease programs with the rest of the health system. The ministry of health and county departments of health should also review internal organizational structures to enhance functional and role clarity of organizational units and staff, respectively. Finally, counties should consider initiating health sector coordination mechanisms between counties to reduce the fragmentation of health system functions across neighboring counties.

How do foundation year and internship experience shape doctors' career intentions and decisions? A meta-ethnography.

PURPOSE: Foundation years or internships are an important period for junior doctors to apply their knowledge and gain clinical competency. Experiences gained during the foundation years or internships are likely to inform newly qualified doctors' opinions about how they want to continue their career. We aimed to understand how medical doctors' internship experiences influence their career intention/decision. METHODS: We conducted qualitative evidence synthesis using meta-ethnography. We searched six electronic bibliographic databases for papers published between 2000-2020 and included papers exploring how foundation years or internship experiences shape doctors' career intention/decisions, including in relation to migration, public/private/dual practice preference, rural/urban preference, and specialty choice. We used the GRADE-CERQual framework to rate confidence in review findings. RESULTS: We examined 23 papers out of 6085 citations screened. We abstracted three high-level inter-related themes across 14 conceptual categories: (1) Deciding the personal best fit both clinically and in general (which option is 'more me'?) through hands-on and real-life experiences (2) Exploring, experiencing and witnessing workplace norms; and (3) Worrying about the future in terms of job market policies, future training and professional development opportunities. Confidence in findings varied but was rated high in 8 conceptual categories. CONCLUSIONS: Our meta-ethnographic review revealed a range of ways in which internship experience shapes medical doctors' career intentions/decisions allowing us to produce a broad conceptual model of this phenomenon. The results highlight the importance of ensuring sufficient, positive and inspiring clinical exposure, improving workplace environment, relationship and culture, refraining from undermining specific specialities and communicating contractual and job market policies early on to young doctors, in order to attract doctors to less popular specialties or work locations where they are most needed. We propose our conceptual model should be further tested in new research across a range of contexts.

Management of human resources for health: implications for health systems efficiency in Kenya.

BACKGROUND: Human resources for health consume a substantial share of healthcare resources and determine the efficiency and overall performance of health systems. Under Kenya's devolved governance, human resources for health are managed by county governments. The aim of this study was to examine how the management of human resources for health influences the efficiency of county health systems in Kenya. METHODS: We conducted a case study using a mixed methods approach in two purposively selected counties in Kenya. We collected data through in-depth interviews (n = 46) with national and county level HRH stakeholders, and document and secondary data reviews. We analyzed qualitative data using a thematic approach, and quantitative data using descriptive analysis. RESULTS: Human resources for health in the selected counties was inadequately financed and there were an insufficient number of health workers, which compromised the input mix of the health system. The scarcity of medical specialists led to inappropriate task shifting where nonspecialized staff took on the roles of specialists with potential undesired impacts on quality of care and health outcomes. The maldistribution of staff in favor of higher-level facilities led to unnecessary referrals to higher level (referral) hospitals and compromised quality of primary healthcare. Delayed salaries, non-harmonized contractual terms and incentives reduced the motivation of health workers. All of these effects are likely to have negative effects on health system efficiency. CONCLUSIONS: Human resources for health management in counties in Kenya could be reformed with likely positive implications for county health system efficiency by increasing the level of funding, resolving funding flow challenges to address the delay of salaries, addressing skill mix challenges, prioritizing the allocation of health workers to lower-level facilities, harmonizing the contractual terms and incentives of health workers, and strengthening monitoring and supervision.

Health system responsiveness: a systematic evidence mapping review of the global literature.

BACKGROUND: The World Health Organisation framed responsiveness, fair financing and equity as intrinsic goals of health systems. However, of the three, responsiveness received significantly less attention. Responsiveness is essential to strengthen systems' functioning; provide equitable and accountable services; and to protect the rights of citizens. There is an urgency to make systems more responsive, but our understanding of responsiveness is limited. We therefore sought to map existing evidence on health system responsiveness. METHODS: A mixed method systemized evidence mapping review was conducted. We searched PubMed, EbscoHost, and Google Scholar. Published and grey literature; conceptual and empirical publications; published between 2000 and 2020 and English language texts were included. We screened titles and abstracts of 1119 publications and 870 full texts. RESULTS: Six hundred twenty-one publications were included in the review. Evidence mapping shows substantially more publications between 2011 and 2020 (n = 462/621) than earlier periods. Most of the publications were from Europe (n = 139), with more publications relating to High Income Countries (n = 241) than Low-to-Middle Income Countries (n = 217). Most were empirical studies (n = 424/621) utilized quantitative methodologies (n = 232), while qualitative (n = 127) and mixed methods (n = 63) were more rare. Thematic analysis revealed eight primary conceptualizations of 'health system responsiveness', which can be fitted into three dominant categorizations: 1) unidirectional user-service interface; 2) responsiveness as feedback loops between users and the health system; and 3) responsiveness as accountability between public and the system. CONCLUSIONS: This evidence map shows a substantial body of available literature on health system responsiveness, but also reveals evidential gaps requiring further development, including: a clear definition and body of theory of responsiveness; the implementation and effectiveness of feedback loops; the systems responses to this feedback; context-specific mechanism-implementation experiences, particularly, of LMIC and fragile-and conflict affected states; and responsiveness as it relates to health equity, minority and vulnerable populations. Theoretical development is required, we suggest separating ideas of services and systems responsiveness, applying a stronger systems lens in future work. Further agenda-setting and resourcing of bridging work on health system responsiveness is suggested.

Applying a gender lens to understand pathways through care for acutely ill young children in Kenyan urban informal settlements.

BACKGROUND: In many African settings, gender strongly influences household treatment-seeking and decision-making for childhood illnesses. While mothers are often the primary engagers with health facilities, their independence in illness-related decisions is shaped by various factors. Drawing on a gender lens, we explored treatment-seeking pathways pre- and post-hospital admission for acutely ill young children living in low income settlements in Nairobi, Kenya; and the gendered impact of child illness both at the household and health system level. METHODS: Household members of 22 children admitted to a public hospital were interviewed in their homes several times post hospital discharge. In-depth interviews covered the child's household situation, health and illness; and the family's treatment-seeking choices and experiences. Children were selected from an observational cohort established by the Childhood Acute Illness and Nutrition (CHAIN) Network. RESULTS: Treatment-seeking pathways were often long and complex, with mothers playing the key role in caring for their children and in treatment decision-making. Facing many anxieties and dilemmas, mothers often consulted with significant influencers - primarily women - particularly where illnesses were prolonged or complex. In contrast to observations in rural African contexts, fathers were less prominent as influencers than (often female) neighbours, grandparents and other relatives. Mothers were sometimes blamed for their child's condition at home and at health facilities. Children's illness episode and associated treatment-seeking had significant gendered socio-economic consequences for households, including through mothers having to take substantial time off work, reduce their working hours and income, or even losing their jobs. CONCLUSION: Women in urban low-income settings are disproportionately impacted by acute child illness and the related treatment-seeking and recovery process. The range of interventions needed to support mothers as they navigate their way through children's illnesses and recovery include: deliberate engagement of men in child health to counteract the dominant perception of child health and care as a 'female-domain'; targeted economic strategies such as cash transfers to safeguard the most vulnerable women and households, combined with more robust labour policies to protect affected women; as well as implementing strategies at the health system level to improve interactions between health workers and community members.

Gender-related influences on adherence to advice and treatment-seeking guidance for infants and young children post-hospital discharge in Bangladesh.

BACKGROUND: Post-hospital discharge mortality risk is high among young children in many low and middle-income countries (LMICs). The available literature suggests that child, caregiver and health care provider gender all play important roles in post-discharge adherence to medical advice, treatment-seeking and recovery for ill children in LMICs, including those with undernutrition. METHODS: A qualitative study was embedded within a larger multi-country multi-disciplinary observational cohort study involving children aged less than 2 years conducted by the Childhood Acute Illness and Nutrition (CHAIN) Network. Primary data were collected from family members of 22 purposively selected cohort children. Family members were interviewed several times in their homes over the 6 months following hospital discharge (total n = 78 visits to homes). These in-depth interviews were complemented by semi-structured individual interviews with 6 community representatives, 11 community health workers and 12 facility-based health workers, and three group discussions with a total of 24 community representatives. Data were analysed using NVivo11 software, using both narrative and thematic approaches. RESULTS: We identified gender-related influences at health service/system and household/community levels. These influences interplayed to family members' adherence to medical advice and treatment-seeking after hospital discharge, with potentially important implications for children's recovery. Health service/system level influences included: fewer female medical practitioners in healthcare facilities, which influenced mothers' interest and ability to consult them promptly for their child's illnesses; gender-related challenges for community health workers in supporting mothers with counselling and advice; and male caregivers' being largely absent from the paediatric wards where information sessions to support post-discharge care are offered. Gendered household/community level influences included: women's role as primary caretakers for children and available levels of support; male family members having a dominant role in decision-making related to food and treatment-seeking behaviour; and greater reluctance among parents to invest money and time in the treatment of female children, as compared to male children. CONCLUSIONS: A complex web of gender related influences at health systems/services and household/community levels have important implications for young children's recovery post-discharge. Immediate interventions with potential for positive impact include awareness-raising among all stakeholders - including male family members - on how gender influences child health and recovery, and how to reduce adverse consequences of gender-based discrimination. Specific interventions could include communication interventions in facilities and homes, and changes in routine practices such as who is present in facility interactions. To maximise and sustain the impact of immediate actions and interventions, the structural drivers of women's position in society and gender inequity must also be tackled. This requires interventions to ensure equal equitable opportunities for men and women in all aspects of life, including access to education and income generation activities. Given patriarchal norms locally and globally, men will likely need special targeting and support in achieving these objectives.

Level and determinants of county health system technical efficiency in Kenya: two stage data envelopment analysis.

BACKGROUND: Improving health system efficiency is a key strategy to increase health system performance and accelerate progress towards Universal Health Coverage. In 2013, Kenya transitioned into a devolved system of government granting county governments autonomy over budgets and priorities. We assessed the level and determinants of technical efficiency of the 47 county health systems in Kenya. METHODS: We carried out a two-stage data envelopment analysis (DEA) using Simar and Wilson's double bootstrap method using data from all the 47 counties in Kenya. In the first stage, we derived the bootstrapped DEA scores using an output orientation. We used three input variables (Public county health expenditure, Private county health expenditure, number of healthcare facilities), and one outcome variable (Disability Adjusted Life Years) using 2018 data. In the second stage, the bias corrected technical inefficiency scores were regressed against 14 exogenous factors using a bootstrapped truncated regression. RESULTS: The mean bias-corrected technical efficiency score of the 47 counties was 69.72% (95% CI 66.41-73.01%), indicating that on average, county health systems could increase their outputs by 30.28% at the same level of inputs. County technical efficiency scores ranged from 42.69% (95% CI 38.11-45.26%) to 91.99% (95% CI 83.78-98.95%). Higher HIV prevalence was associated with greater technical inefficiency of county health systems, while higher population density, county absorption of development budgets, and quality of care provided by healthcare facilities were associated with lower county health system inefficiency. CONCLUSIONS: The findings from this analysis highlight the need for county health departments to consider ways to improve the efficiency of county health systems. Approaches could include prioritizing resources to interventions that will reduce high chronic disease burden, filling structural quality gaps, implementing interventions to improve process quality, identifying the challenges to absorption rates and reforming public finance management systems to enhance their efficiency.

Strengthening the role of community health workers in supporting the recovery of ill, undernourished children post hospital discharge: qualitative insights from key stakeholders in Bangladesh and Kenya.

BACKGROUND: Undernourished children in low- and middle-income countries remain at elevated risk of death following hospital discharge, even when treated during hospitalisation using World Health Organisation recommended guidelines. The role of community health workers (CHWs) in supporting post-discharge recovery to improve outcomes has not been adequately explored. METHODS: This paper draws on qualitative research conducted as part of the Childhood Acute Illnesses and Nutrition (CHAIN) Network in Bangladesh and Kenya. We interviewed family members of 64 acutely ill children admitted across four hospitals (a rural and urban hospital in each country). 27 children had severe wasting or kwashiorkor on admission. Family members were interviewed in their homes soon after discharge, and up to three further times over the following six to fourteen months. These data were supplemented by observations in facilities and homes, key informant interviews with CHWs and policy makers, and a review of relevant guidelines. RESULTS: Guidelines suggest that CHWs could play a role in supporting recovery of undernourished children post-discharge, but the mechanisms to link CHWs into post-discharge support processes are not specified. Few families we interviewed reported any interactions with CHWs post-discharge, especially in Kenya, despite our data suggesting that opportunities for CHWs to assist families post-discharge include providing context sensitive information and education, identification of danger signs, and supporting linkages with community-based services and interventions. Although CHWs are generally present in communities, challenges they face in conducting their roles include unmanageable workloads, few incentives, lack of equipment and supplies and inadequate support from supervisors and some community members. CONCLUSION: A multi-pronged approach before or on discharge is needed to strengthen linkages between CHWs and children vulnerable to poor outcomes, supported by clear guidance. To encourage scale-ability and cost-effectiveness of interventions, the most vulnerable, high-risk children, should be targeted, including undernourished children. Intervention designs must also take into account existing health worker shortages and training levels, including for CHWs, and how any new tasks or personnel are incorporated into hospital and broader health system hierarchies and systems. Any such interventions will need to be evaluated in carefully designed studies, including tracking for unintended consequences.

The ethical implications of verbal autopsy: responding to emotional and moral distress.

BACKGROUND: Verbal autopsy is a pragmatic approach for generating cause-of-death data in contexts without well-functioning civil registration and vital statistics systems. It has primarily been conducted in health and demographic surveillance systems (HDSS) in Africa and Asia. Although significant resources have been invested to develop the technical aspects of verbal autopsy, ethical issues have received little attention. We explored the benefits and burdens of verbal autopsy in HDSS settings and identified potential strategies to respond to the ethical issues identified. METHODS: This research was based on a case study approach centred on two contrasting HDSS in Kenya and followed the Mapping-Framing-Shaping Framework for empirical bioethics research. Data were collected through individual interviews, focus group discussions, document reviews and non-participant observations. 115 participants were involved, including 86 community members (HDSS residents and community representatives), and 29 research staff (HDSS managers, researchers, census field workers and verbal autopsy interviewers). RESULTS: The use of verbal autopsy data for research and public health was described as the most common potential benefit of verbal autopsy in HDSS. Community members mentioned the potential uses of verbal autopsy data in addressing immediate public health problems for the local population while research staff emphasized the benefits of verbal autopsy to research and the wider public. The most prominent burden associated with the verbal autopsy was emotional distress for verbal autopsy interviewers and respondents. Moral events linked to the interview, such as being unsure of the right thing to do (moral uncertainty) or knowing the right thing to do and being constrained from acting (moral constraint), emerged as key causes of emotional distress for verbal autopsy interviewers. CONCLUSIONS: The collection of cause-of-death data through verbal autopsy in HDSS settings presents important ethical and emotional challenges for verbal autopsy interviewers and respondents. These challenges include emotional distress for respondents and moral distress for interviewers. This empirical ethics study provides detailed accounts of the distress caused by verbal autopsy and highlights ethical tensions between potential population benefits and risks to individuals. It includes recommendations for policy and practice to address emotional and moral distress in verbal autopsy.

Examining health sector application and utility of program-based budgeting: County level experiences in Kenya.

INTRODUCTION: In 2012, Kenya enacted a new Public Finance Management Act to guide the public-sector planning and budgeting process. This new law replaced the previous line item budgeting, with a new program-based budgeting (PBB) process. This study examined the experience of health sector PBB implementation at the county level in Kenya. METHODS: We carried out a review of the literature documenting the health sector application and utility of PBB in low- and middle-income countries. We then collected empirical data to examine the experience of health sector application of PBB at County Level in Kenya. RESULTS: In the financial year 2017/18, counties utilised the PBB approach for health sector planning. The PBB approach was perceived by key stakeholders; to have improved the alignment of technical priorities with budgetary allocation, and to have increased transparency, accountability and openness of the process. Its challenges included lack of clear tools and guidelines to support implementation, low capacity at county level, political interference and the organisation of the public sector electronic financial management system around line item budgeting system. CONCLUSION: PBB is potentially a useful tool for aligning health sector planning and budgeting and ensuring the Annual Work Plan is more result oriented. However, realisation of this goal would be enhanced by the developing clear tools and guidelines to support its implementation, building capacity for county health sector managers to better understand the PBB application, and reforming the public-sector budgetary management system to align it with the PBB approach.

Prolonged health worker strikes in Kenya- perspectives and experiences of frontline health managers and local communities in Kilifi County.

BACKGROUND: While health worker strikes are experienced globally, the effects can be worst in countries with infrastructural and resource challenges, weak institutional arrangements, underdeveloped organizational ethics codes, and unaffordable alternative options for the poor. In Kenya, there have been a series of public health worker strikes in the post devolution period. We explored the perceptions and experiences of frontline health managers and community members of the 2017 prolonged health workers' strikes. METHODS: We employed an embedded research approach in one county in the Kenyan Coast. We collected in-depth qualitative data through informal observations, reflective meetings, individual and group interviews and document reviews (n = 5), and analysed the data using a thematic approach. Individual interviews were held with frontline health managers (n = 26), and group interviews with community representatives (4 health facility committee member groups, and 4 broader community representative groups). Interviews were held during and immediately after the nurses' strike. FINDINGS: In the face of major health facility and service closures and disruptions, frontline health managers enacted a range of strategies to keep key services open, but many strategies were piecemeal, inconsistent and difficult to sustain. Interviewees reported huge negative health and financial strike impacts on local communities, and especially the poor. There is limited evidence of improved health system preparedness to cope with any future strikes. CONCLUSION: Strikes cannot be seen in isolation of the prevailing policy and health systems context. The 2017 prolonged strikes highlight the underlying and longer-term frustration amongst public sector health workers in Kenya. The health system exhibited properties of complex adaptive systems that are interdependent and interactive. Reactive responses within the public system and the use of private healthcare led to limited continued activity through the strike, but were not sufficient to confer resilience to the shock of the prolonged strikes. To minimise the negative effects of strikes when they occur, careful monitoring and advanced planning is needed. Planning should aim to ensure that emergency and other essential services are maintained, threats between staff are minimized, health worker demands are reasonable, and that governments respect and honor agreements.

Vulnerability and agency across treatment-seeking journeys for acutely ill children: how family members navigate complex healthcare before, during and after hospitalisation in a rural Kenyan setting.

BACKGROUND: Child mortality rates during hospitalisation for acute illness and after discharge are unacceptably high in many under-resourced settings. Childhood vulnerability to recurrent illness, and death, is linked to their families' situations and ability to make choices and act (their agency). We examined vulnerability and agency across treatment-seeking journeys for acutely ill children and considered the implications for policy and practice. METHOD: A qualitative sub-study was embedded within the prospective CHAIN Network cohort study, which is investigating mechanisms of inpatient and post-hospital discharge mortality among acutely ill young children across a spectrum of nutritional status. Primary data were collected from household members of 20 purposively selected cohort children over 18 months through formal interviews (total n = 74), complemented by informal discussions and observations. Data were analysed using narrative and thematic approaches. RESULTS: Treatment-seeking pathways were often long and complex, particularly for children diagnosed as severely malnourished. Family members' stories reveal that children's carers, usually mothers, navigate diverse challenges related to intersecting vulnerabilities at individual, household and facility levels. Specific challenges include the costs of treatment-seeking, confusing and conflicting messaging on appropriate care and nutrition, and poor continuity of care. Strong power inequities were observed between family members and health staff, with many mothers feeling blamed for their child's condition. Caregivers' agency, as demonstrated in decision-making and actions, often drew on the social support of others but was significantly constrained by their situation and broader structural drivers. CONCLUSION: To support children's care and recovery, health systems must be more responsive to the needs of families facing multiple and interacting vulnerabilities. Reducing incurred treatment costs, improving interpersonal quality of care, and strengthening continuity of care across facilities is essential. Promising interventions need to be co-designed with community representatives and health providers and carefully tested for unintended negative consequences and potential for sustainable scale-up.

Deliberately infecting healthy volunteers with malaria parasites: Perceptions and experiences of participants and other stakeholders in a Kenyan-based malaria infection study.

Controlled human malaria infection (CHMI) studies involve the deliberate infection of healthy volunteers with malaria parasites under controlled conditions to study immune responses and/or test drug or vaccine efficacy. An empirical ethics study was embedded in a CHMI study at a Kenyan research programme to explore stakeholders' perceptions and experiences of deliberate infection and moral implications of these. Data for this qualitative study were collected through focus group discussions, in-depth interviews and non-participant observation. Sixty-nine participants were involved, including CHMI study volunteers, community representatives and research staff. Data were managed using QSR Nvivo 10 and analysed using an inductive-deductive approach, guided by ethics literature. CHMI volunteers had reasonable understanding of the study procedures. Decisions to join were influenced by study incentives, trust in the research institution, their assessment of associated burdens and motivation to support malaria vaccine development. However, deliberate malaria infection was a highly unusual research strategy for volunteers, community representatives and some study staff. Volunteers' experiences of physical, emotional and social burdens or harms were often greater than anticipated initially, and fluctuated over time, related to specific procedures and events. Although unlikely to deter volunteers' participation in similar studies in furture, we argue that the dissonance between level of understanding of the burdens involved and actual experiences are morally relevant in relation to community engagement, informed consent processes, and ongoing support for volunteers and research staff. We further argue that ethics oversight of CHMI studies should take account of these issues in deciding whether consent, engagement and the balance of benefits and harms are reasonable in a given context.

Ethical practice in my work: community health workers' perspectives using photovoice in Wakiso district, Uganda.

BACKGROUND: Health service delivery should ensure ethical principles are observed at all levels of healthcare. Working towards this goal requires understanding the ethics-related priorities and concerns in the day-to-day activities among different health practitioners. These practitioners include community health workers (CHWs) who are involved in healthcare delivery in communities in many low-and middle-income countries such as Uganda. In this study, we used photovoice, an innovative community based participatory research method that uses photography, to examine CHWs' perspectives on ethical concerns in their work. METHODS: We explored perspectives of 10 CHWs (5 females and 5 males) on ethical dimensions of their work for 5 months using photovoice in a rural community in Wakiso district, Uganda. As part of the study, we: 1. Oriented CHWs on photovoice research and ethics; 2. Asked CHWs to take photographs of key ethical dimensions of their work; 3. Held monthly meetings to discuss and reflect on the photos; and 4. Disseminated the findings. The discussions from the monthly meetings were audio recorded, transcribed, and emerging data analysed using conventional content analysis with the help of Atlas ti version 6.0.15. RESULTS: CHWs were aware of and highly concerned about the need to observe ethical principles while carrying out their roles. The ethical principles CHWs were aware of and endeavoured to observe during their work were: maintaining professional integrity and abiding by ethical principles of practice; ethical responsibility in patient care; maintaining confidentiality while handling clients; respect for persons and communities; and enhancing their knowledge and skills for better practice. However, CHWs also identified challenges concerning their observance of ethical principles including: low commitment to their work due to other obligations; availability of some reference materials and guidelines in English yet majority could only read in the local language; and minimal avenues for knowledge enhancement such as trainings. CONCLUSIONS: CHWs were aware of and keen to discuss ethical issues in their work. However, there is need to address the challenges they face so as to facilitate observing ethical principles during the course of their work in communities.

Producing routine malaria data: an exploration of the micro-practices and processes shaping routine malaria data quality in frontline health facilities in Kenya.

BACKGROUND: Routine health information systems can provide near real-time data for malaria programme management, monitoring and evaluation, and surveillance. There are widespread concerns about the quality of the malaria data generated through routine information systems in many low-income countries. However, there has been little careful examination of micro-level practices of data collection which are central to the production of routine malaria data. METHODS: Drawing on fieldwork conducted in two malaria endemic sub-counties in Kenya, this study examined the processes and practices that shape routine malaria data generation at frontline health facilities. The study employed ethnographic methods-including observations, records review, and interviews-over 18-months in four frontline health facilities and two sub-county health records offices. Data were analysed using a thematic analysis approach. RESULTS: Malaria data generation was influenced by a range of factors including human resource shortages, tool design, and stock-out of data collection tools. Most of the challenges encountered by health workers in routine malaria data generation had their roots in wider system issues and at the national level where the framing of indicators and development of data collection tools takes place. In response to these challenges, health workers adopted various coping mechanisms such as informal task shifting and use of improvised tools. While these initiatives sustained the data collection process, they also had considerable implications for the data recorded and led to discrepancies in data that were recorded in primary registers. These discrepancies were concealed in aggregated monthly reports that were subsequently entered into the District Health Information Software 2. CONCLUSION: Challenges to routine malaria data generation at frontline health facilities are not malaria or health information systems specific; they reflect wider health system weaknesses. Any interventions seeking to improve routine malaria data generation must look beyond just malaria or health information system initiatives and include consideration of the broader contextual factors that shape malaria data generation.

Intersectionality and global health leadership: parity is not enough.

There has been a welcome emphasis on gender issues in global health in recent years in the discourse around human resources for health. Although it is estimated that up to 75% of health workers are female (World Health Organization, Global strategy on human resources for health: Workforce 2030, 2016), this gender ratio is not reflected in the top levels of leadership in international or national health systems and global health organizations (Global Health 50/50, The Global Health 50/50 report: how gender responsive are the world's leading global health organizations, 2018; Clark, Lancet, 391:918-20, 2018). This imbalance has led to a deeper exploration of the role of women in leadership and the barriers they face through initiatives such as the WHO Global Strategy on Human Resources for Health: Workforce 2030, the UN High Level Commission on Health Employment and Economic Growth, the Global Health 50/50 Reports, Women in Global Health, and #LancetWomen. These movements focus on advocating for increasing women's participation in leadership. While efforts to reduce gender imbalance in global health leadership are critical and gaining momentum, it is imperative that we look beyond parity and recognize that women are a heterogeneous group and that the privileges and disadvantages that hinder and enable women's career progression cannot be reduced to a shared universal experience, explained only by gender. Hence, we must take into account the ways in which gender intersects with other social identities and stratifiers to create unique experiences of marginalization and disadvantage.

Kenyan health stakeholder views on individual consent, general notification and governance processes for the re-use of hospital inpatient data to support learning on healthcare systems.

BACKGROUND: Increasing adoption of electronic health records in hospitals provides new opportunities for patient data to support public health advances. Such learning healthcare models have generated ethical debate in high-income countries, including on the role of patient and public consent and engagement. Increasing use of electronic health records in low-middle income countries offers important potential to fast-track healthcare improvements in these settings, where a disproportionate burden of global morbidity occurs. Core ethical issues have been raised around the role and form of information sharing processes for learning healthcare systems, including individual consent and individual and public general notification processes, but little research has focused on this perspective in low-middle income countries. METHODS: We conducted a qualitative study on the role of information sharing and governance processes for inpatient data re-use, using in-depth interviews with 34 health stakeholders at two public hospitals on the Kenyan coast, including health managers, providers and researchers. Data were collected between March and July 2016 and analysed using a framework approach, with Nvivo 10 software to support data management. RESULTS: Most forms of clinical data re-use were seen as an important public health good. Individual consent and general notification processes were often argued as important, but contingent on interrelated influences of the type of data, use and secondary user. Underlying concerns were linked to issues of patient privacy and autonomy; perceived risks to trust in health systems; and fairness in how data would be used, particularly for non-public sector re-users. Support for engagement often turned on the anticipated outcomes of information-sharing processes, as building or undermining trust in healthcare systems. CONCLUSIONS: As reported in high income countries, learning healthcare systems in low-middle counties may generate a core ethical tension between supporting a public good and respecting patient autonomy and privacy, with the maintenance of public trust acting as a core requirement. While more evidence is needed on patient and public perspectives on learning healthcare activities, greater collaboration between public health and research governance systems is likely to support the development of efficient and locally responsive learning healthcare activities in LMICs.