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. 2019 May 10;16(1):53.
doi: 10.1186/s12978-019-0730-9.

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

Anam Feroz  1 , Mohsina Noor Ibrahim  2 , Elizabeth M McClure  3 , Anum Shiraz Ali  4 , Shiyam Sunder Tikmani  4 , Sayyeda Reza  4 , Zahid Abbasi  4 , Jamal Raza  2 , Haleema Yasmin  5 , Khadija Bano  5 , Afia Zafar  6 , Sameen Siddiqi  4 , Robert L Goldenberg  7 , Sarah Saleem  4
Affiliations

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

Anam Feroz et al. Reprod Health. .

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 check-ups. 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.

Keywords: Acceptability; Cause of death; Concerns; Counseling; Minimal invasive tissue sampling; Neonates; Parents; Perceptions; Qualitative study; Religious leaders; Stillbirth.

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Conflict of interest statement

Ethics approval and consent to participate

Ethical approval for this study was obtained from the NICH hospital [11/2018] and Aga Khan University Ethical Review Committee (AKU-ERC) – [5358-CHS-ERC- 18]. Written informed consent was provided by all study participants. Informed consent included permission to audio record the interviews and use anonymized quotes. Voluntary participation and the right to ask any questions and to decline participation at any time were emphasized during the data collection.

Consent for publication

Written informed consent for publication was obtained.

Competing interests

The authors declare that they have no competing interests.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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