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

Abstract

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.

Vulnerability, Agency, and the Research Encounter: Family Members' Experiences and Perceptions of Participating in an Observational Clinical Study in Kenya

“…For three children, the primary caregivers were an aunt or grandmother. As described previously (Zakayo et al, 2020), many caregivers arrived at Kilifi County Hospital after having undergone a complex and lengthy period of treatment-seeking: children were often first monitored and treated at home, sometimes for extended periods, before being taken to traditional or religious healers, peripheral public health facilities, or local small private clinics. Most participants reported treatment-seeking journeys for "this illness"often difficult to distinguish from previous illnesses-of at least 3 months (Table 3) before admission.…”

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

“…The narrative approach involved the construction of a detailed summary for each child, drawing on all available data collected for that household. We used household stories to examine families' overall pathways through care, and to look for patterns of similarity and difference across households, facilitated by the construction of charts (see Zakayo et al for a more detailed explanation) [47]. For the thematic analysis, all transcriptions were coded by the research team who also conducted the interviews in NVivo11 software using a coding framework developed based on our initial study objectives and preliminary emerging themes of interest.…”

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

“…The narrative approach involved the construction of a detailed summary for each child, drawing on all available data collected for that household. We used household stories to examine families' overall pathways through care, and to look for patterns of similarity and difference across households, facilitated by the construction of charts (see Zakayo et al for a more detailed explanation) [47]. For the thematic analysis, all transcriptions were coded by the research team who also conducted the interviews in NVivo 10 software using a coding framework developed based on our initial study objectives and preliminary emerging themes of interest.…”