Background: Significantly improvements in the medical science and advanced in medical equipment and hospital facilities have increased the survival rate of poor prognosis infants (PPIs), including premature/extremely low birth weight, asphyxiated, and born with potentially lethal congenital disorders. However, availability of medical resources was not at the same levels across Iran’s cities. Thus, the country health care system encounters to a challenging question about providing advanced care to PPIs. Methods: The present study aimed to develop a national guideline for management of PPIs. We reviewed 120 articles, protocols, and guidelines, and held 15 sessions with 42 active participants. Semi-structured interviews were performed separately with medical specialist teams, medical ethicists, religious masters (Shia clerics), and parents of PPIs. Results & Conclusions: This guideline is the first nationwide attempt to prepare a comprehensive framework that can support prenatal counseling in Iranian hospitals with various medical facilities to achieve more homogeneity in newborn medical care. In addition, we collected an extensive list of lethal congenital malformations, genetic disorders, inborn errors of metabolism and covers the main areas of concern with a clearly states of responsibilities for decision-making regarding prenatal counseling for PPIs across Iran.
Advances in medicine and medical technology have presented new moral challenges in terms of the management of extremely preterm infants and newborns with severe anomalies and advanced asphyxia. The aim of the present study was to examine the attitudes of health care providers and parents regarding decisions about the treatment of these neonates. The attitude of the Shia clerics is assessed in this study as well. In this qualitative content analysis research, data were collected through semi-structured interviews and focus group discussions (FGDs) with 98 participants, including physicians, nurse practitioners, medical ethicists, Shia clerics, and parents. Purposive sampling was employed by selecting those members of the community whom we thought would provide us with the best information and were also eager to participate. Data collection continued until data saturation was reached. Data analysis was carried out using conventional content analysis. Analysis of the data resulted in the extraction of 332 codes along with the following four categories: the necessity for preparation of a national guideline for the management of neonates with poor prognosis, the establishment of hospital neonatal-management committees, decision-making regarding the limits of viability, and parental support. This study affirms that the responsibility in terms of decision-making for neonates with poor prognosis lies upon hospital neonatal-management committees based on approved national guidelines such that decisions are made according to the aforementioned guidelines, Islamic moral codes, and scope of services available in medical units. This study dismisses individual decision-making and underlines the responsibility of a hospital neonatal-management committee in making decisions based on approved guidelines that conform to the regulations of national law and Islamic moral codes that determine the continuation or withdrawal of medical care and treatment of infants with a poor prognosis while bearing in mind that regulations, hospital facilities, resources, and other conditions differ in various hospitals within the country and with developed countries.
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