Factors Associated With Parental Acceptance of Minimally Invasive Tissue Sampling to Identify the Causes of Stillbirth and Neonatal Death

Author:

Tikmani Shiyam Sunder1,Saleem Sarah1,Moore Janet L2,Reza Sayyeda1,Gowder Guruprasad3,Dhaded Sangappa4,Yogesh Kumar S4,Goudar Shivaprasad S4,Kulkarni Vardendra3,Kumar Sunil3,Acetuino Anna2,Parlberg Lindsay2,McClure Elizabeth M2,Goldenberg Robert L5

Affiliation:

1. Department of Community Health Sciences, Aga Khan University, Karachi, Pakistan

2. RTI International, Durham, North Carolina, USA

3. JJM Medical College, Davengere, India

4. KLE Academy of Higher Education and Research’s Jawaharlal Nehru Medical College, Belagavi, India

5. Department of Obstetrics and Gynecology, Columbia University School of Medicine, New York, New York, USA

Abstract

Abstract Background Minimally invasive tissue sampling (MITS) is a noninvasive technique used to determine the cause of deaths. Very little is known about the factors that affect MITS acceptance or refusal. We present findings from a prospective study conducted in Southeast Asia on the reasons for accepting or refusing MITS. Methods This substudy was conducted in India and Pakistan to determine the acceptability of MITS in women who had a stillbirth or preterm live birth who later died. A formal questionnaire was used to gather observations during the consent for MITS, such as reasons for acceptance or refusal of MITS, as well as which family members were involved in the decision process. Results In Pakistan, the MITS acceptability forms were completed for 470 of 477 women (98.5%) with an eligible stillbirth for this substudy, and 334 of 337 (99.1%) with an eligible preterm neonatal death. In India, MITS acceptability forms were completed in 219 of 305 women (71.8%) with an eligible stillbirth and 260 of 264 (98.4%) with an eligible preterm neonatal death. In India, the most common reasons for MITS refusal for both stillbirths and preterm neonatal deaths were cultural concerns, while in Pakistan, the most common reason for MITS refusal was a potential delay in the funeral. The primary reason for accepting MITS was that the parents wanted to understand the cause of death. At both sites, fathers, mothers, and relatives, often in consultation, choose whether or not to accept MITS to determine the cause of death in stillbirths and preterm neonatal deaths. Conclusions MITS was more commonly accepted in India than in Pakistan. Cultural concerns in India and funeral delays in Pakistan were common reasons for refusal. Parents from both sites were curious to know the cause of stillbirths and preterm neonatal deaths. The father, mother, and relatives were key decision makers for consenting to or declining MITS.

Funder

Bill and Melinda Gates Foundation

Publisher

Oxford University Press (OUP)

Subject

Infectious Diseases,Microbiology (medical)

Reference16 articles.

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