Accepted for/Published in: JMIR Public Health and Surveillance
Date Submitted: May 8, 2025
Date Accepted: Jul 6, 2025
(closed for review but you can still tweet)
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Experiences and Perceptions about Death Reporting and Notification among Rural Communities on the Islands of Lake Victoria, Uganda: Lessons for Strengthening Mortality Surveillance in Africa
ABSTRACT
Background:
Mortality data are critical for planning and prioritization of public health interventions and are generated through national Civil Registration and Vital Statistics (CRVS) systems like mortality surveillance systems. However, many low- and middle-income countries lack comprehensive CRVS systems. Moreover, frameworks for building and strengthening mortality surveillance systems do not acknowledge the cultural relativism surrounding death or the societal and cultural variations in the interpretation and meaning of death and how these influence strategies to improve mortality surveillance systems.
Objective:
This paper aimed to describe the experiences and perceptions about death reporting and notification among rural dwellers on the islands of Lake Victoria in Central Uganda to inform strategies for strengthening mortality surveillance.
Methods:
The study was conducted in Buvuma and Kalangala Districts on Lake Victoria using a phenomenological qualitative research design. We conducted 12 in-depth interviews with community members who had experienced the death of a next of kin and notified and reported and 8 in-depth interviews with those who had experienced the loss of a next of kin but did not notify and report the death. Key informant interviews were also conducted with two police officers and two cultural leaders. Four focus group discussions were conducted among village leaders. Interviews were abductively analyzed to generate grand narratives.
Results:
The findings revealed six grand narratives of the perceptions and experiences of the process of death reporting and notification among the rural dwellers. These include 1) death reporting and notification is preceded by a tragic event that affects how, when and if it is conducted, 2) a long and cumbersome process, 3) a process which involves multiple stakeholders with official and unofficial roles and responsibilities, 4) a process with little perceived individual or societal value, 5) a process with several mandatory but unofficial costs and 6) a process preceded by events with deep cultural undertones.
Conclusions:
Death reporting and notification is perceived to be tedious and cumbersome, which discourages community members from conducting it. There is a need to evaluate the process to remove any perceived or actual barriers through strategies such as decentralization of the process to lower levels of political administration. Death reporting and notification is also part of a broader social context that includes cultural beliefs, norms, and traditions. Efforts to strengthen mortality surveillance systems would profit from acknowledging the broader socio-cultural issues around death and grieving and the role that cultural and religious institutions can contribute to addressing misconceptions and articulating the benefit of the process to society. Clinical Trial: Not Applicable
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