Perceptions of parents and healthcare professionals regarding minimal invasive tissue sampling to identify the cause of death in stillbirths and neonates: a qualitative study protocol

Abstract

BackgroundGlobally, around 2.6 million neonatal deaths occur world-wide every year and the numbers of stillbirths is almost similar. Pakistan is ranked among the highest countries in the world for neonatal mortality. In 2016, for every 1000 babies born in Pakistan, 46 died before the end of the first month of life. Also, Pakistan had the highest rate of stillbirths (43.1/1000 births) in 2015. To meet sustainable development (SDG) targets of reducing neonatal mortality and stillbirths, it is essential to gain understanding about the causes of neonatal death and stillbirths. In Pakistan, full autopsies are conducted only in medico-legal cases and are very rarely performed to identify a definitive cause of death (CoD) and because of cost and insufficient staff are generally not feasible. Recently, minimally invasive tissue sampling (MITS) has been used to determine CoD in neonates and stillbirths as it addresses some of the socio-cultural and religious barriers to autopsy. However, it is not known how families and communities will perceive this procedure; therefore, exploring family and healthcare professionals’ perceptions regarding MITS is essential in determining acceptable and feasible approaches for Pakistan.MethodsThe study will employ an exploratory qualitative research design. The study will be conducted at the National Institute of Child Health (NICH) hospital of Karachi. The data collection method will consist of key-informant interviews (KIIs) and focus group discussions (FGDs). FGDs will be conducted with the families and relatives of newborns who are visiting the outpatient department (OPD) and well-baby clinics of NICH hospital. KIIs will be conducted with the NICH - medical director, healthcare providers, professionals involved in proceedings related to death and dying, religious leaders, health sector representatives from the government, public health experts, maternal and child health (MCH) specialists, obstetricians and neonatologists and experts from the bioethics committee. Study data will be analyzed using NVivo 10 software.DiscussionThe research will help explore specific cultural, religious and socio-behavioral factors that may increase or decrease the acceptability of MITS for identifying COD in neonates and stillbirths. The findings of the qualitative study will provide a better understanding of parents’ and healthcare professionals’ attitudes towards the use of MITS on neonatal deaths and stillborns.

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

“…We used an exploratory qualitative research design to collect data from the purposively sampled population as described in detail elsewhere [10]. The study was conducted at the National Institute of Child Health (NICH) hospital, because of their well-established pediatric care protocols and willingness to participate in the study.…”

“…To address these concerns, we undertook a study to explore and understand the acceptability of MITS among parents, and religious leaders in Pakistan [10]. This study was conducted in preparation for a larger study, the Project to Understand and Research Preterm Pregnancy Outcome in South Asia (PURPOSe).…”

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

“…Unlike a complete diagnostic autopsy, MITS can be performed with limited infrastructure and by trained medical technicians such as histopathologist or mortuary assistants [ 3 ]. Compared with complete diagnostic autopsy, MITS is faster, less expensive, and markedly less invasive, and has demonstrated potential to support accurate cause of death determination in stillbirths and neonates [ 1 , 4 ]. 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.…”

Perceptions of health professionals regarding minimally invasive tissue sampling (MITS) to identify the cause of death in stillbirths and neonates: results from a qualitative study

“…As a result, the majority of the families and health professionals with a perinatal death are left without understanding the CoD. Minimally invasive tissue sampling (MITS) is being explored as an alternate method to CDA to investigate the cause of stillbirth and neonatal death [11, 12]. MITS involves body inspection and recording of basic anthropometric data, body palpation, body imaging and a series of post-mortem needle punctures using biopsy needles to obtain body fluids and tissue samples of lungs, brain, liver and other organs, within the first few hours after death.…”

“…MITS involves body inspection and recording of basic anthropometric data, body palpation, body imaging and a series of post-mortem needle punctures using biopsy needles to obtain body fluids and tissue samples of lungs, brain, liver and other organs, within the first few hours after death. The samples are then sent to laboratories for a thorough histopathological and microbiological examination that would help identify the CoD [11, 13]. In Mozambique, the validation of MITS compared to CDA has been conducted and the results showed a moderate to substantial concordance between the two methods (Kappa values ranging from 0.40 to 0.78) [13, 14].…”