Perceptions of parents and religious leaders regarding minimal invasive tissue sampling to identify the cause of death in stillbirths and neonates: results from a qualitative study

Abstract

Background: Recently, the minimal invasive tissue sampling (MITS) procedure has been developed to support determination of the cause of death as an alternate to conventional autopsy, especially in countries where complete diagnostic autopsy is not routine. To assess the feasibility of implementation of the MITS procedure for a study to determine cause of death in premature births and stillbirths in south Asia, we explored the views and perceptions of parents and religious leaders on the acceptability of MITS. Methods: A qualitative study was conducted at the National Institute of Child Health (NICH) hospital of Karachi, Pakistan. Focus group discussions (FGDs) were conducted with parents of newborns who visited well-baby clinics of the NICH hospital for post-natal checkups. Key-informant interviews (KIIs) were conducted with religious leaders. Data were analyzed using NVivo 10 software. Results: A total of 13 interviews (FGDs = 8; KIIs = 5) were conducted. Three overarching themes were identified: (I) acceptability of MITS; (II) concerns affecting the implementation of MITS; and (III) religious and cultural perspectives. Participants' acceptance of MITS was based on personal, religious, cultural and social beliefs. Parents widely recognized the need for this procedure in cases where the couple had experienced multiple stillbirths, neonatal deaths and miscarriages. Counseling of parents was considered vital to address emotional concerns of the parents and the family. Religious leaders indicated acceptability of the MITS procedure from a religious perspective and advised that respect for the deceased and consent of the guardians is mandatory when performing MITS. Conclusions: This qualitative study provided a unique opportunity to understand the views of parents and religious leaders towards the use of MITS. Generally, MITS appears to be an acceptable method for identifying the cause of death in neonates and stillbirths, provided that the deceased is respected and buried as soon as possible without any delays and parents are counseled appropriately. Findings from this research are essential in approaching families for consent for MITS.

A comparison of MITS counseling and informed consent processes in Pakistan, India, Bangladesh, Kenya, and Ethiopia

“…MITS may be more acceptable to parents because it is non-disfiguring, and can be performed quickly, with fewer delays for the potential burial practices. MITS also provides researchers, policy-makers and society with high quality pathology-based postmortem data to inform the design and implementation of interventions to prevent neonatal deaths and stillbirths [ 5 ].…”

Thoughts on assigning cause of death for stillbirth and neonatal death: a commentary

“…In addition, it is important to develop counselling methodologies to provide accurate information to the parents so that consent is really informed. In studies by our group and others, preliminary results of studies addressing these issues are presented …”

“…The challenges of expert panels for cause‐of‐death ascertainment have been identified during studies both in the USA and in LMICs, including the US Stillbirth Collaborative Research Network (SCRN) study, the Study of Illness in Preterms (SIPS) in Ethiopia, and the multi‐country Child Health and Mortality Prevention Surveillance (CHAMPS) network . For experts defining a cause of death, the data elements necessary to determine the cause were often time consuming to locate.…”

“…In studies by our group and others, preliminary results of studies addressing these issues are presented. 10 We and others have used computer algorithms with clinical data to estimate the cause of death for stillbirths and neonatal deaths. 1 Nonetheless, and especially in research settings, an evaluation by a panel of experts is considered the most accurate method to determine the cause of death.…”

Perceptions of the healthcare providers regarding acceptability and conduct of minimal invasive tissue sampling (MITS) to identify the cause of death in under-five deaths and stillbirths in North India: a qualitative study

“…MITS is being used in project mode in few countries. The formative researchers and early implementation experiences have revealed positive theoretical acceptability for MITS among parents, community members and religious leaders [28][29][30][31][32]. Acceptance for MITS among the healthcare providers at facility and community levels have been encouraging [33][34][35][36].…”