Pilot of a Perinatal Verbal Autopsy System for Rohingya Refugees in Cox’s Bazar, Bangladesh Open Access

Zainul, Hasna (Spring 2020)

Permanent URL: https://etd.library.emory.edu/concern/etds/n296x0316?locale=en


Background: An estimated one million Rohingya live in refugee camps in Cox’s Bazar, making it the largest concentration of refugees in the world. In 2018, a partial Maternal and Perinatal Death Surveillance and Response (MPDSR) system was implemented to count and determine causes of death for mothers and newborns. This system aims to count all maternal and perinatal deaths and determine causes of death for all maternal deaths. Perinatal deaths are also reviewed if they occur in health facilities to determine causes of death. However, there is a need to determine causes of death for perinatal deaths which occur in the community. This provided the rationale for creation of a Perinatal Verbal Autopsy system for Cox’s Bazar.

Purpose: The purpose of this special studies project is to document the development, implementation, and pilot testing of a Perinatal Verbal Autopsy system in Rohingya refugee camps in Cox’s Bazar, Bangladesh.

Methods: The author developed an initial data collection tool in May 2019 which was further developed in collaboration with CDC and local NGO partners in Cox’s Bazar. The refined tool was then translated by local partners into Bangla and pilot tested in 2 rounds, where the author observed pilot testing and made significant changes to the protocol accordingly. Lastly, the author conducted informal interviews with stakeholders to determine the best methods to create a sustainable protocol.

Results: The final protocol for the Perinatal Verbal Autopsy can be broken into 12 steps, while the final form of the questionnaire contains 12 sections with a total of 235 questions. Questions are asked about maternal health and antenatal care, a narrative section about the death, a structured symptom duration checklist, and a discussion on the family’s attempt to seek care. A sample training guide, completed protocol, and interview guide were created to accompany the Perinatal Verbal Autopsy questionnaire.

Recommendations: To feasibly implement a Perinatal Verbal Autopsy system in the Rohingya refugee context, several changes to the standard WHO protocol need to be made. These changes can improve data quality, create trust between the Rohingya and Bangladeshi CHW Supervisors/midwives, and form new linkages between the formal health sector and informal systems currently used in camp communities. Adaptations of this Perinatal Verbal Autopsy system have the potential to be scaled up for multiple humanitarian settings, allowing for community-based data collection practices to occur for perinatal deaths. 

Table of Contents

Introduction 1

Background 4

Rohingya Situation in Cox’s Bazar 4

History in Myanmar 5

Rohingya Refugee Needs 5

Documented Barriers to Maternal Child Health 8

Current Maternal and Child Mortality 10

Verbal Autopsy 12

Overview of Typical Verbal Autopsy Procedure 12

Ethical Considerations in Verbal Autopsy Methodology 13

Potential Verbal Autopsy Use in Humanitarian Settings 15

Limitations of the Verbal Autopsy 16

Examinations of Non-Traditional Verbal Autopsy Roles 17

Maternal and Perinatal Death Surveillance and Response System in Cox’s Bazar 20

Methods 23

Development and Pilot Testing of a Perinatal Verbal Autopsy System in Cox’s Bazar 23

Results 26

Finalized Protocol for Cox’s Bazar 26

Sample Training and Quality Assurance System 33

Interview Guide for Perinatal Verbal Autopsy Questionnaire 36

Section 1. Attempted Interviewer Visits 41

1.2 Interviewer Location Information 46

1.3 Birth, Life, and Death of the Deceased 48

Section 2. Basic Information on the Respondent(s) 49

Section 3. Information on the Mother and Respondent 52

Section 4. Basic Information on the Deceased 54

Section 5. Respondent’s Account of Illness/Events that Led to Death 56

Section 6. Antenatal Care 58

Section 7. Delivery History 73

Section 8. History of Accidents/Injuries 95

Section 9. Signs and Symptoms Noted During the Final Illness 97

Section 10. Access to Care 106

Section 11. Data Abstracted from Other Health Records 116

Section 12. Interviewer’s Observations 118

12.1 CHW Supervisor’s Observations 118

Common Perinatal Verbal Autopsy Questions and Scenarios 120

Discussion 124

Challenges and Opportunities from Pilot Testing of the Perinatal Verbal Autopsy 124

Further Implications of Data and the Perinatal Verbal Autopsy in Cox’s Bazar 127

Conclusions 130

References 131 

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