Perceptions of family, community and religious leaders and acceptability for minimal invasive tissue sampling to identify the cause of death in under-five deaths and stillbirths in North India: a qualitative study

Abstract

Background Minimal invasive tissue sampling (MITS) has emerged as a suitable alternative to complete diagnostic autopsy (CDA) for determination of the cause of death (CoD), due to feasibility and acceptability issues. A formative research was conducted to document the perceptions of parents, community and religious leaders on acceptability of MITS. Methods This qualitative study was conducted at and around the Safdarjung Hospital, Delhi, India. Participants for in-depth interview included the parents who had either child or neonatal death or stillbirth and the key community and religious representatives. The focus group discussions (FGDs) involved community members. Process of obtaining consent for MITS was observed. Data were analyzed inductively manually for emerging themes and codes. Results A total of 104 interviews (parents of deceased children, neonates or stillbirths, n = 93; community members, n = 8 and religious leaders, n = 7), 8 FGDs (n = 72) were conducted and process of obtaining consent for MITS (n = 27) was observed. The participants were positive and expressed willingness to accept MITS. The key determinants for acceptance of MITS were: (1) understanding and willingness to know the cause of death or stillbirth, (2) experience of the healthcare received and trust, (3) the religious and sociocultural norms. Parents and community favored for MITS over CDA when needed, especially where in cases with past stillbirths and child deaths. The experience of treatment, attitude and communication from healthcare providers emerged as important for consent. The decision making process was collective involving the elders and family. No religious leader was against the procedure, as both, the respect for the deceased and need for medical care were satisfied. Conclusions Largely, MITS appeared to be acceptable for identifying the causes of child deaths and stillbirths, if the parents and family are counseled appropriately considering the sociocultural and religious aspects. They perceived the quality of care, attitude and communication by the healthcare providers as critical factors for acceptance of MITS.

Primary motivations for and experiences with paediatric minimally invasive tissue sampling (MITS) participation in Malawi: a qualitative study

“…One notable exception was that single mothers were more likely to consent to MITS independently or with only female family members present, possibly explained by the matrilocal setting 20. In cases where the father was at least somewhat involved, they were engaged in the consent process and often had the principal authority to consent, corroborating hypothetical findings from formative MITS acceptability research in Mozambique, South Africa, Bangladesh, India and Pakistan 6 8 9 21 22. Interestingly, relationships with HCWs or research staff (neither positive nor negative) or dissatisfaction with the healthcare provided, did not seem to strongly influence decision-making among MiM participants, even though many did report negative interactions.…”

“…Interestingly, relationships with HCWs or research staff (neither positive nor negative) or dissatisfaction with the healthcare provided, did not seem to strongly influence decision-making among MiM participants, even though many did report negative interactions. This is in contrast to qualitative work pre-MiM study implementation from our group and other formative studies that suggested trust in the healthcare system and relationships with HCWs and research staff would be important drivers of consent 14 21. However, the data from our in-depth interviews are only among those who consented to MITS and reflect families’ experiences 6 weeks after the death and MITS procedure 4 5 14.…”

Community—Minimal Invasive Tissue Sampling (cMITS) using a modified ambulance for ascertaining the cause of death: A novel approach piloted in a remote inaccessible rural area in India

“…Proper counselling of the parents and family, based on sociocultural and religious grounds along with the good care, behaviour and empathetic conversation by the healthcare providers can improve acceptability of MITS[ 30 ]. Above descriptive findings are not anecdotal.…”

“…Our team got permission from independent ethical committee and health ministry screening committee of government of India for all of the procedures mentioned in the manuscript. Proper counselling of the parents and family, based on sociocultural and religious grounds along with the good care, behaviour and empathetic conversation by the healthcare providers can improve acceptability of MITS [ 30 ]. To know surely the cause of death (CoD) to guard their upcoming children was the key incentive for participation and consenting by parents in MITS.…”

Perinatal autopsy in Ghana: Healthcare workers knowledge and attitude

“…As such, in talking to parents or obtaining consent for an autopsy, it is necessary to bear this in mind and inform them about the different types of autopsies available. The uptake of PM has increased significantly amongst these religious groups in HMICs since the introduction of MITS and non-invasive autopsy ( 20 , 21 ).…”