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

Anam Shahil Feroz, Christina Paganelli, Milka Bunei, Beza Eshetu, Shahana Parveen, Sayyeda Reza, Chaitali Sanji, Shiyam Sunder Tikmani, Shivaprasad S. Goudar, Guruprasad Goudar, Sarah Saleem, Elizabeth M. McClure, Robert L. Goldenberg

Research output: Contribution to journalReview articlepeer-review

12 Citations (Scopus)


Globally, more than 5 million stillbirths and neonatal deaths occur annually. For many, the cause of death (CoD) is unknown. Minimally invasive tissue sampling (MITS) has been increasingly used in postmortem examinations for ascertaining the CoD in stillbirths and neonates. Our study compared the counseling and consent methods used in MITS projects in five countries in Africa and south Asia. Key informant interviews were conducted with researchers to describe the characteristics and backgrounds of counselors, the environment and timing of consent and perceived facilitators and barriers encountered during the consent process. Counselors at all sites had backgrounds in social science, psychology and counseling or clinical expertise in obstetrics/gynecology or pediatrics. All counsellors received training about techniques for building rapport and offering emotional support to families; training duration and methods differed across sites. Counselling environments varied significantly; some sites allocated a separate room, others counselled families at the bedside or nursing stations. All counsellors had a central role in explaining the MITS procedure to families in their local languages. Most sites did not use visual aids during the process, relying solely on verbal descriptions. In most sites, parents were approached within one hour of death. The time needed for decision making by families varied from a few minutes to 24 h. In most sites, extended family took part in the decision making. Because many parents wanted burial as soon as possible, counsellors ensured that MITS would be conducted promptly after receiving consent. Barriers to consent included decreased comprehension of information due to the emotional and psychological impact of grief. Moreover, having more family members engaged in decision-making increased the complexity of counselling and achieving consensus to consent for the procedure. While each site adapted their approach to fit the context, consistencies and similarities across sites were observed.

Original languageEnglish
Article number120
JournalReproductive Health
Issue number1
Publication statusPublished - 12 Aug 2020


  • CHAMPS Bangladesh
  • Comparative
  • Informed consent processes
  • MITS counseling
  • PRESS 2 Kenya
  • PURPOSe India
  • PURPOSe Pakistan
  • SIP Ethiopia


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