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

Abstract

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.

Shared responsibility for decision-making in NICU: A scoping review

“…The study design in five of the eight papers was empirical, qualitative studies [27][28][29][30][31] and three were discussion papers. [32][33][34] Some of the data were collected with semi-structured interviews, [27][28][29]31 including indepth face-to-face, 27,28 individual 28,29 or couple interviews. 28 One study used also non-structured telephone interviews.…”

“…28 One study used also non-structured telephone interviews. 28 Other data were collected by observing decision-making situations 27 and formal conversations between families and physicians. 30 A total of 124 mothers, 79 fathers, 11 physicians and four nurses participated in the studies and there was one study that comprised nine families.…”

“…30 The parents' ages in one study ranged from 27 to 49 years and the healthcare professionals ranged from 35 to 59 years 27 The mean age of the mothers was 34 in another study 28 and one study stated that the mean age of the parents was 32. 29 Some of the papers included the parents of infants who were born extremely preterm (before 28 weeks of gestation), very preterm (before 32 weeks), [27][28][29][30][31] moderate to late preterm (32-36 weeks), [27][28][29] and at full-term. 27,[29][30][31] The data collection took place when the infants were admitted to the neonatal intensive care units, which happened at 9-44 days of life in one study 27 and 6 days to 8 months in another.…”

“…31 One paper used hermeneutics as a philosophical approach. 29 The five empirical studies were conducted on neonatal intensive care units [27][28][29][30][31] and one comprised single-family rooms. 29 The discussion papers focused on neonatal intensive care units, 32,33 although one also described wider facilities for very young infants.…”

“…34 Duty referred to the parents' moral obligations and taking appropriate action. 33 Accountability referred to the duties of healthcare professionals, 27 and accountable was used when professionals had to deal with the consequences that their actions had on the parents. 27,30 Previous knowledge on shared responsibility for decision-making Inductive content analysis showed that shared responsibility for decision-making between parents and professionals was described in relation to the parents' intentions and emotions and the factors that facilitated or inhibited the process (Figure 2).…”