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Objectives We sought to understand healthcare-seeking patterns and delays in obtaining effective treatment for rural Rwandan children aged 1-5 years by analysing verbal and social autopsies (VSA). Factors in the home, related to transport and to quality of care in the formal health sector (FHS) were thought to contribute to delays. Design We collected quantitative and qualitative cross-sectional data using the validated 2012 WHO VSA tool. Descriptive statistics were performed. We inductively and deductively coded narratives using the three delays model, conducted thematic content analysis and used convergent mixed methods to synthesise findings. Setting The study took place in the catchment areas of two rural district hospitals in Rwanda-Kirehe and Southern Kayonza. Participants were caregivers of children aged 1-5 years who died in our study area between March 2013 and February 2014. Results We analysed 77 VSAs. Although 74% of children (n=57) had contact with the FHS before dying, most (59%, n=45) died at home. Many caregivers (44%, n=34) considered using traditional medicine and 23 (33%) actually did. Qualitative themes reflected difficulty recognising the need for care, the importance of traditional medicine, especially for â € poisoning’ and poor perceived quality of care. We identified an additional delay-phase IV-which occurred after leaving formal healthcare facilities. These delays were associated with caregiver dissatisfaction or inability to adhere to care plans. Conclusion Delays in deciding to seek care (phase I) and receiving quality care in FHS (phase III) dominated these narratives; delays in reaching a facility (phase II) were rarely discussed. An unwillingness or inability toadhere to treatment plans after leaving facilities (phase IV) were an important additional delay. Improving quality of care, especially provider capacity to communicate danger signs/treatment plans and promote adherence in the presence of alternative explanatory models informed by traditional medicine, could help prevent childhood deaths.
During the study period, there were 23 health centres (HC) in Kirehe and Southern Kayonza serving a population of 538 405. HCs were staffed by nurses who provided inpatient and outpatient services.11 12 Community health workers (CHWs) provided integrated community case management of paediatric illnesses (c-IMCI).13 They diagnosed and treated pneumonia, diarrhoea and malaria, monitored malnutrition and made referrals. An estimated average of one CHW served 50 people under age 5; there were two c-IMCI-trained CHWs per village.13 14 Kirehe was served by one district hospital and Kayonza by two. The study was conducted in the catchment area of one hospital in Kirehe and another in Kayonza. Area households in the two districts were located a median 3.5 km from their closest HC.11 Community-based health insurance (CBHI, also referred to as ‘Mutuelle de Santé’ or ‘mutuelle’) was available in the study districts and achieved over 90% coverage in Rwanda overall (Makaka et al, 2012).15 The catchment area for this study was rural and the majority of families relied on subsistence agriculture. Paved roads connected the main towns, and unpaved roads extended to most communities. Homes were predominantly made of natural materials such as earth and thatch and few communities had access to electricity. According to the 2014 Rwandan Demographic and Health Survey, nearly 40% of the population lived below the poverty line, although nearly all women in Kirehe and Kayonza worked in agriculture. Educational attainment was low in both areas, with most women not having completed primary school.16 Data were collected through VSAs with caregivers of 259 U5s who died between March 2013 and February 2014. VSA is a process used to assign causes of death in cases where no standard autopsy was done and social autopsy augments the structured interview of a verbal autopsy with open-ended questions about the beliefs, decisions and perspectives of those who cared for the decedent.10 17–24 Quantitative and qualitative data were collected during one visit with a family. Deaths were identified through health records, Rwandan Ministry of Health (RMOH) reporting systems and the Monitoring of Vital Events Using Information Technology programme in which CHWs reported vital events by telephone. CHWs then helped locate families, and families who consented were interviewed between 3 weeks and 1 year after the death. The minimum waiting period of 3 weeks was selected considering the Rwandan custom of a formal 1-week mourning period and literature from other countries suggesting that several weeks is an appropriate delay.25 26 Importantly, families could decline participation and could choose a time for the interview if they consented. This paper is a subanalysis of VSA data of children between the ages of 1 year and 5 years. This age range was chosen because it includes children with shared developmental characteristics (eg, the ability to crawl/walk), clinical characteristics (eg, causes of pneumonia) and social experiences (eg, not being in primary school). Quantitative data were collected using the validated WHO 2012 verbal autopsy semi-structured interview tool (InterVA4)27 and supplemented by questions from the RMOH’s Death Audit Tool and the 2010 Rwanda Demographic and Health Survey. Trained interviewers used handheld electronic devices and conducted semi-structured interviews in the local language, Kinyarwanda. Informants were asked to describe events surrounding the death of the child. Segments during which interviewees expanded on symptoms, decision-making, care-seeking and perceptions of care received were transcribed and then back-transcribed from Kinyarwanda to English for quality and accuracy review. The research question was informed by the work of Partners in Health/Inshuti Mu Buzima (PIH/IMB), which has supported the RMOH to strengthen healthcare delivery and systems in Kirehe and Southern Kayonza districts since 2005. This VSA project was part of a larger initiative to better understand and reduce U5 mortality. Patients were not involved in the recruitment to and conduct of the study, nor were they involved in the design of the study. However, as a service delivery organisation, PIH/IMB has a deep experience with patients and their families/caregivers that helped shape the study. Aggregated early results were shared with the MOH and IMB in a timely manner to facilitate improved healthcare delivery. We used the three delays model28 as a framework to begin our thematic content analysis. This model was originally developed to understand maternal mortality.28 Phase I delays relate to deciding to seek care, phase II delays occur while trying to reach a facility and phase III delays occur after arrival at a facility in the form of poor quality of care. We use the Lancet Global Health Commission on High Quality Health Systems framework to understand high-quality care. Specifically, high-quality care includes competent care and systems, positive user experience as well as better health, confidence in the system and economic benefit.29 A mix of inductive and deductive coding was used to develop a codebook,30 which was discussed and revised by an interdisciplinary team of researchers, physicians and public health professionals. A subset of interviews (11) were double coded to ensure inter-rater reliability and then the codebook was applied to the dataset until saturation of codes was reached at 77 interviews. Iterative thematic analysis using coding, recoding, categorisation and reorganisation was used to further develop the themes and generate hypotheses. Dedoose was used for qualitative and mixed methods analysis (V.7.5.9, SocioCultural Research Consultants, Los Angeles, California, USA). The most likely cause of death (COD) was determined using InterVA4.27 COD and sociodemographic variables from verbal autopsies were analysed using descriptive statistics. Quantitative analytics were performed using STATA V.14 (StataCorp, College Station, Texas, USA). Associations between descriptive variables and qualitative themes were explored using a convergent mixed methods approach.31 This approach is recommended by experts to better understand complex phenomenon, such as care-seeking behaviour, because it helps uncover patterns that may not have been accessible through only quantitative data analysis or only qualitative data analysis.32 Excerpts were first organised by phase of delay and then divided by quantitative variables. These variables were chosen based on hypotheses which were generated during the qualitative analysis of the interviews. Hypotheses included 1) maternal education impacts care-seeking by giving caregivers more access to accurate health information, 2) children who died at home experienced more phase I delays, 3) less common causes of death are associated with more phase III delays. Thematic analysis of these subgroups of excerpts was conducted to identify divergent themes. Interviews were coded and analysed until saturation of codes was achieved, ie, saturation was achieved when no new codes or ideas were identified.33 Verbal consent was deemed permissible by two ethics review boards. A consent form was read to potential participants by Kinyarwanda-speaking data collectors who also answered questions. Participants were asked to verbally confirm that the consent was understood. Data collectors were trained in sensitivity, patience and consideration with families who had lost a child. Each interview was assigned a number that matched with caregiver identifying information and was stored in a separate file in a secure location. No individual identifiers were recorded on the data collection forms.
