Parental factors affecting their participation in decision-making for neonates with life-threatening conditions: A qualitative study Parents' participation in decision-making

Abstract

Background: Parents and healthcare professionals make decisions for neonates with life-threatening conditions (LTCs). Parents may be inadequately included. Limited studies have evaluated influential factors. We aimed to explore parental factors affecting parents' participation in decision-making (DM) for neonates with LTCs.

Materials and methods: A qualitative study was conducted in four level III neonatal intensive care units (NICUs) in Tehran, and twenty-two in-depth, semi-structured, face-to-face interviews were conducted in 2019. Interviews were transcribed and analyzed using a conventional content analysis approach. During the coding process, participants' words were condensed into meaning units, and 297 open-coded were extracted and then grouped into thirteen subcategories based on similarities and differences. This process was repeated until four main categories were identified.

Results: Main categories and subcategories include "parental capabilities" (level of health literacy, emotional state, paradoxical feelings, and perception of the situation), "a sense of parental self-efficacy" (perception of parental role, awareness of self-abilities, and willingness to accept the parental role), "convictions" (religious beliefs and cultural values), and "living conditions" (job balance, household management and caring for siblings, and commuting) were found.

Conclusion: Although factors were parental, professionals who care for neonates with LTCs should be trained in family-centered care (FCC) principles to involve parents in DM. Nurses should be aware of parents' abilities and inform them of their rights. Parents' presentation at the bedside prevents their marginalization, reduces feelings of guilt, and helps them understand their baby's behavior and surrounding reality. A formal neonatal palliative care (NPC) program can encourage open communication between professionals and parents. A multidisciplinary team should consider parents' needs and values.

Keywords: Decision-making; life-threatening conditions; neonates; parental factors; parents’ participation; qualitative study.