Healthcare professionals-related factors affecting parents' participation in decision making for neonates with life-threatening conditions: A qualitative study.

RATIONALE, AIMS, AND

OBJECTIVES

Neonates with life-threatening conditions face complex clinical circumstances that confront parents and professionals with ethical decisions. Parents' participation in decision making has not gained sufficient attention in practice. Understanding factors affecting parents' participation is required. This study is part of a comprehensive project that explored the process of parents' participation in decision making for neonates with life-threatening conditions. The current study aimed to explore healthcare professionals-related factors affecting parents' participation in decision-making for neonates with life-threatening conditions.

METHODS

A grounded theory methodology was used in the comprehensive project. Twenty-two interviews/68 hours of observation were conducted. Data were concurrently analysed throughout data generation and constant comparative analysis. Data collected until theoretical saturation was reached, the extracted categories were coherent and the emerging theory made sense. After coding stages, the core category and the relationships with other main categories involved in the process of parents' participation in decision-making were developed. For this study, the category reflecting healthcare professionals-related factors affecting parents' participation in decision-making was reported.

RESULTS

Four themes were found: risk aversion including fear of litigation, fear of being accountable to the parents, and fear of bearing emotional distress; unprofessionalism including poor adherence to professional ethics, inadequate skill/knowledge, poor communication, and nurses' negligence in playing their professional role; information deficiencies including insufficient information, conflicting information, and complex and technical information, and clashes of attitudes including conflict about parents' participation in decision-making and conflict about the best interest of neonates.

CONCLUSION

Professionals should be aware of their role in involving parents in decision making. Training professionals on family centred care principle and communication skills contribute to support parents emotionally and respond empathically to their negative expressions. Training on ethics, development, and dissemination of guidelines and rules of conduct can make professionals more sensitive to ethical aspects of their work and may reduce their fear of litigation.