Beyond the healthcare system: The societal and contextual factors impacting parents’ participation in decision-making for neonates with life-threatening conditions

Background: Parents of neonates with life-threatening conditions and professionals, bear the burden of making complex decisions. Parents may not be fully involved in decision-making, and there is a paucity of evidence regarding the influence of social context on parents’ participation. We aimed to explore factors that extended beyond the healthcare system and impacted parents’ participation in decision-making for neonates with life-threatening conditions. Materials and methods: This qualitative research was carried out in 2019 in four level-III Iranian NICUs, (neonatal intensive care units) where twenty-three face-to-face semi-structured interviews were conducted, transcribed, and analyzed using a conventional content analysis technique. Interviews were condensed into meaningful units during the coding phase, resulting in 206 open codes. These codes were then categorized into eleven categories based on commonalities and distinctions. This iterative process continued until 4 main subcategories were established. Results: The main categories and sub-categories were “unmodified regulations according to the neonatology advances” (lack of regulations to modify ineffective treatments, lack of a legally documented do not resuscitate order, lack of a defined regional neonatal viability threshold, and lack of maternal guardianship of child medical care), “deficiencies of the health insurance system” (covering the cost of ineffective treatments and lack of insurance covering for palliative care services), “treatment-oriented culture in society” (expecting a miracle for medical science, difficult acceptance of neonatal death and difficult acceptance of home death), and “physician-oriented culture in society” (excessive respect for physicians’ decision-making eligibility and social position of physicians). Conclusion: The findings revealed concepts surrounding parents’ participation in decision-making for life-threatening conditions neonates are influenced by social, legal, cultural, and financial aspects. To bridge the gap between healthcare professionals’ attitudes and cultural and religious beliefs, fatwas, and laws, a collaborative approach is necessary. To address the complex challenges of decision-making for these neonates, involving stakeholders like clinicians, legal experts, Islamic scholars, sociologists, jurists, judges, and medical ethicists is crucial for modifying laws to align with neonatology advancements.