Why parents agree or disagree for minimally invasive tissue sampling (MITS) to identify causes of death in under-five children and stillbirth in North India: a qualitative study

Abstract

Plain English summary Information about exact cause of death and stillbirth are essential for appropriate care of children and pregnant women. Autopsy assists in establishing exact cause of death, but not preferred by the parents/families. Minimally invasive tissue sampling (MITS) is a suitable alternate to autopsy for establishing causes of death and stillbirth. A pilot project on MITS was initiated at a tertiary care hospital in north India (New Delhi). An exploratory formative research was conducted to document the experiences of counselling and consenting for MITS. Under this study, observation of the counselling and consenting process for conduct of MITS in under-five children (including neonates) and stillbirths were done. Additionally, in-depth interviews with MITS team members were also conducted. Counselling for MITS was done in one corner of the ward or adjacent corridor and mostly targeted at the father and family members present. Counselling was primarily verbal explanation in local language. The key concerns from parents/family were disfigurement, time needed and possible benefits. Most of the parents consulted family members before decision. Benefit during next pregnancy, past previous pregnancy or neonatal loss and senior treating doctor’s involvement were key factors for consent. Poor quality of care and comprehension were the reasons for refusal.

Keywords

• Minimal invasive tissue sampling
• MITS
• Counselling
• Informed consent
• Children
• Stillbirth, formative research, qualitative