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Background: Out-of-hospital death among children living in resource poor settings occurs frequently. Little is known about the location and circumstances of child death following a hospital discharge. Objectives: This study aimed to understand the context surrounding out-of-hospital deaths and the barriers to accessing timely care for Ugandan children recently discharged from the hospital. Methods: This was a mixed-methods sub-study within a larger cohort study of post-discharge mortality conducted in the Southwestern region of Uganda. Children admitted with an infectious illness were eligible for enrollment in the cohort study, and then followed for six months after discharge. Caregivers of children who died outside of the hospital during the six month post-discharge period were eligible to participate in this sub-study. Qualitative interviews and univariate logistic regression were conducted to determine predictors of out-of-hospital deaths. Results: Of 1,242 children discharged, 61 died during the six month post-discharge period, with most (n=40, 66%) dying outside of a hospital. Incremental increases in maternal education were associated with lower odds of out-of-hospital death compared to hospital death (OR: 0.38, 95% CI: 0.19 – 0.81). The qualitative analysis identified health seeking behaviors and common barriers within the post-discharge period which delayed care seeking prior to death. For recently discharged children, caregivers often expressed hesitancy to seek care following a recent episode of hospitalization. Conclusion: Mortality following discharge often occurs outside of a hospital context. In addition to resource limitations, the health knowledge and perceptions of caregivers can be influential to timely access to care. Interventions to decrease child mortality must consider barriers to health seeking among children following hospital discharge.
This study was conducted on a sub-set of participants of a larger cohort study focused on determining predictors of post-discharge mortality among children admitted with infectious illness. A detailed review of the methods has been previously described.8 Briefly, all children aged 6 months to 5 years admitted to Mbarara Regional Referral Hospital (MRRH) and Holy Innocents Children’s Hospital (HICH) with a suspected or confirmed infectious illness were eligible for inclusion into the main study. All enrolled children had baseline characteristics measured which included clinical, laboratory and social variables. Patients received routine care during admission and were subsequently followed-up at 6 months post-discharge for a brief questionnaire to determine health status and health seeking during the post-discharge period. An interim analysis of this study suggested that most post-discharge deaths occurred outside of the hospital context. The study protocol was, therefore, amended to conduct detailed qualitative interviews with families of study subjects who died during this period. The purpose of these interviews was to gain further insights into the circumstances behind these out- of- hospital deaths and to determine the most important barriers to seeking hospital care during the post-discharge period from the caregiver’s perspective. All subjects who were enrolled in the primary study and who died outside of the hospital during the 6 month post-discharge period were eligible for re-enrollment and re-consent. This amendment was approved by the institutional review boards at the Mbarara University of Science and Technology in Mbarara, Uganda and the University of British Columbia in Vancouver, BC. The families of eligible subjects who died outside of the hospital during follow-up were contacted by phone and invited to participate in this study. If verbal consent was obtained, the primary caregiver was visited at their home and formally re-consented. A research nurse trained in qualitative methods administered a structured questionnaire recorded using a digital audio recorder (Table 1). The questionnaire consisted of eight open-ended questions related to events leading up to the child’s death and subsequent probes. Questions sought to explore health seeking behavior and barriers to care just prior to death. Structured interview questionnaire and probes Interviews were translated and transcribed from Runyankole-Rukiga into English. Thematic codebook development followed a standardized framework.9 Through an iterative process, interviews were coded and analyzed for descriptive and interpretive themes. Descriptive themes included barriers to care and health seeking behavior during the post-discharge period, while interpretive themes focused on caregiver perspectives of child death and the role of the health care system. Thematic frequencies were generated to quantify medical symptoms, health seeking behavior, and barriers to care. Common themes were summarized to describe conceptual frameworks elicited by caregivers. To determine if the demographic, social or environmental factors reported at admission were associated with out of hospital death (vs. in-hospital death), univariate logistic regression analysis was conducted. Analyses were limited to univariate analysis due to the relatively few outcomes available. All quantitative analyses were conducted using SAS 9.3 (Carey, NC).
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