Care-seeking patterns among families that experienced under-five child mortality in rural Rwanda

Background Over half of under-five deaths occur in sub-Saharan Africa and appropriate, timely, quality care is critical for saving children’s lives. This study describes the context surrounding children’s deaths from the time the illness was first noticed, through the care-seeking patterns leading up to the child’s death, and identifies factors associated with care-seeking for these children in rural Rwanda. Methods Secondary analysis of a verbal and social autopsy study of caregivers who reported the death of a child between March 2013 to February 2014 that occurred after discharge from the child’s birth facility in southern Kayonza and Kirehe districts in Rwanda. Bivariate analyses using Fisher’s exact tests were conducted to identify child, caregiver, and household factors associated with care-seeking from the formal health system (i.e., community health worker or health facility). Factors significant at α = 0.10 significance level were considered for backwards stepwise multivariate logistic regression, stopping when remaining factors were significantly associated with care-seeking at α = 0.05 significance level. Results Among the 516 eligible deaths among children under-five, 22.7% (n = 117) did not seek care from the health system. For those who did, the most common first point of contact was community health workers (45.8%). In multivariate logistic regression, higher maternal education (OR = 3.36, 95% CI: 1.89, 5.98), having diarrhea (OR = 4.21, 95%CI: 1.95, 9.07) or fever (OR = 2.03, 95%CI: 1.11, 3.72), full household insurance coverage (3.48, 95%CI: 1.79, 6.76), and longer duration of illness (OR = 22.19, 95%CI: 8.88, 55.48) were significantly associated with formal care-seeking. Conclusion Interventions such as community health workers and insurance promote access to care, however a gap remains as many children had no contact with the health system prior to death and those who sought formal care still died. Further efforts are needed to respond to urgent cases in communities and further understand remaining barriers to accessing appropriate, quality care. This study is a secondary analysis of data that the authors collected for a verbal and social autopsy study, which interviewed primary caregivers that experienced the death of a child under-five years of age between March 2013 to February 2014 in the Kirehe District Hospital and Rwinkwavu District Hospital catchment areas, in Kirehe and southern Kayonza Districts, respectively. In these two catchment areas, there are three levels of healthcare delivered by the Ministry of Health (MOH) with support from Partners In Health/Inshuti Mu Buzima (PIH/IMB). At the community level, there are three community health workers for each village and two of them (called “binomes”) provide services for children under-five, including the diagnosis and treatment of pneumonia, malaria, and diarrhea through community IMCI. Health centers (15 in Kirehe District and 8 in southern Kayonza District) provide mainly outpatient primary healthcare. District hospitals provide secondary care, mostly to patients referred from health centers. The most complicated cases are referred to tertiary hospitals [25], which are primarily based in the capital city of Kigali. The terrain in rural Rwanda is hilly and the average walking distance from households to the nearest health facility in Kirehe is 92.4 minutes and 64.2 minutes in Kayonza [26]. The most common forms of transportation in these districts are walking and fee-per-use methods such as bicycles, minibuses, and motorcycle taxis. The STROBE checklist (S1 File) is available in the supplementary materials. The original data collection aimed to have a census of all under-five deaths during the study period. For the main verbal and social autopsy study, all under-five deaths during the study period were identified from community and health facility records by triangulating existing MOH reporting systems and the Monitoring of Vital Events using Information Technology (MoVe-IT) program. MoVe-IT was introduced in the two districts in 2012 to complement existing reporting systems, and consisted of text message reporting by community health workers of all vital events among mothers and under-five children [27]. Families that experienced an under-five death were located in the community with the help of community health workers. For this secondary analysis, all children under-five that died and were captured in the original data collection were included unless they met the exclusion criteria for our secondary analysis: neonatal deaths that occurred before discharge from the facility where they were born and children whose caregivers did not report on care-seeking were excluded. Those born outside of a facility were included if the caregivers reported on care-seeking. Data was collected through household interviews with caregivers of the deceased child. Caregivers were asked to report on demographic characteristics, and the symptoms and care-seeking patterns prior to the child’s death using a structured interview questionnaire adapted from the World Health Organization’s (WHO) verbal autopsy tool [28]. The WHO’s verbal autopsy tool contains a series of questions about specific symptoms the child experienced during the illness that resulted in the child’s death, such as presence of a fever or diarrhea, the duration of the illness prior to death, as well as contextual factors such as whether the child was involved in an accident, distance of the household to a health facility, and caregiver perception of illness severity. The questionnaire also included a subset of questions from the MOH’s Death Audit Tool (i.e, place of birth, places where care was sought, reasons for not seeking care, time spent in health facilities, perceived quality of care, status of mother and father, household religion, household occupation, and health insurance coverage) and the 2010 Rwanda Demographic and Health Survey (i.e., household assets and housing materials). Variables were grouped into predisposing factors, enabling factors, and perceived and evaluated need based on the Andersen framework for care-seeking (Fig 1).[6] No personal identifiers were stored on the data collection form; instead, caregivers’ identifiers were stored in a separate file in a secure location with matching study IDs for data cleaning and validation. Initial data were collected on paper with double entry for data quality control but the majority of data were collected using Android tablets. The primary outcome of interest in this study was formal care-seeking prior to the child’s death, which was defined as seeking care from the formal health system through community health workers or health facilities (health posts, health centers, hospitals, or private clinics). Taking a child to traditional healers or seeking self-treatment from a pharmacy or from neighbors were all categorized as not seeking formal care. We describe child, caregiver and household variables and test for their associations with care-seeking using a Fisher’s exact test. All variables associated with care-seeking at α = 0.10 significance level in the bivariate analyses were entered into a full logistic regression model. We used backwards stepwise regression to identify predictors and risk factors associated with seeking care upon noticing the child’s illness among children under-five, stopping when all remaining variables were significant at the α = 0.05 significance level. All analyses were completed in Stata version 13 (StataCorp 2011. College Station, TX). This study was approved by Rwanda National Ethics Committee (RNEC) and the Partners Institutional Review Board in Boston, Massachusetts under the Population Health Implementation and Training (PHIT) program, a partnership between PIH/IMB, the University of Rwanda and the Rwanda MOH. All caregivers who participated provided written informed consent. Given the sensitive nature of the questionnaire, all data collectors were trained to be considerate of and sensitive to the caregiver’s needs such as giving time to respond, ensuring caregivers understood that all answers were voluntary, providing comfort in any instance where a caregiver may have become upset, and postponing or ending the interview if preferred by the caregivers.