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.

Pediatric clinical research in low-resourced countries involves individuals defined as “vulnerable” in research ethics guidance. Insights from research participants can strengthen the design and oversight of studies. We share family members' perspectives and experiences of an observational clinical study conducted in one Kenyan hospital as part of an integrated empirical ethics study. Employing qualitative methods, we explored how research encounters featured in family members' care-seeking journeys. Our data reveals that children's vulnerability is intricately interwoven with that of their families, and that research processes and procedures can inadvertently add to hidden burdens for families. In research, the potential for layered and intersecting situational and structural vulnerability should be considered, and participants' agency in constrained research contexts actively recognized and protected.

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.

Background Carefully planned research is critical to building policies and interventions to counter the physical, psychological and social challenges young people living with HIV/AIDS regularly face, without increasing burdens. Through embedded social science research in an ongoing longitudinal cohort study on neurobehavioural outcomes in Adolescents Living with HIV/AIDS in Kenya, we develop an account of researchers’ responsibilities towards young people involved in research, drawing on concepts of vulnerability and agency in the literature as ‘interacting layers’. Methods Using qualitative research methods of in-depth interviews, group discussions, observations and a participatory workshop, we explored key stakeholders’ views and experiences of vulnerability and resilience for young people living with HIV/AIDS. Our enquiry included domains of home and community, school, health clinic and research participation in Kilifi County in Kenya. The study involved 62 policy, provider, research and community-based stakeholders, including 27 young people living with HIV/AIDS and participating in research. Three linked research phases supported an iterative process of learning and enquiry, drawing on Framework Analysis. Results Young people faced many forms of vulnerability related to risks of stigmatisation across health clinics, schools and in homes. Sources of vulnerability were interrelated and cross sectoral with varying experiences of vulnerability and capacity for resilience that were importantly underpinned by access to social and economic resources. Interacting layers of vulnerability acted to progressively undermine wellbeing, leading to clusters of increasingly serious physical and mental health, social, educational and economic outcomes. Such vicious circles of vulnerability, or cascades, could be reversed, with positive inputs within and across sectors building resilience and leading to positive outcomes. Experiences of research participation reflected a potential to increase forms of vulnerability but importantly also to promote resilience for many young people. Conclusions The potential for experiences of research participation to exacerbate vulnerability and strengthen resilience for young people living with HIV/AIDS, through contributing to positive or negative cascades, has important implications for research planning. We argue that researchers’ responsibilities include addressing structural causes of vulnerability for research participants living with HIV, giving examples of strategies, and for the importance of embedded empirical ethics research to identify context-specific risks and opportunities.