Barriers and facilitators to shared decision-making in neonatal medicine: A systematic review and thematic synthesis of parental perceptions

Systematically review parental perceptions of shared decision-making (SDM) in neonatology, identifying barriers and facilitators to implementation. Electronic database (Medline, PsycINFO, CINAHL and Scopus) and follow-up searches were conducted to identify qualitative studies. Data were extracted, thematically analysed and synthesised. Searches yielded 2445 papers, of which 25 were included. Thematic analysis identified six key themes. Key barriers included emotional crises experienced in the NICU setting, lack of medical information provided to parents to inform decision-making, inadequate communication of information, poor relationships with caregivers, lack of continuity in care, and perceived power imbalances between HCPs and parents. Key facilitators included clear, honest and compassionate communication of medical information, caring and empathetic caregivers, continuity in care, and tailored approaches that reflected parent’s desired level of involvement. The highly specialised environment, and the emotional crises experienced by parents impact significantly on their perceived capacity to engage in surrogate decision-making. Complex and multi-factorial interventions that address the training needs of HCPs, and the emotional, informational and decision support needs of parents are needed. SDM skills training, improved information delivery, and integrated emotional and decisional support could help parents to become more involved in SDM for their infant. •Power imbalance is a major barrier for SDM in neonatology.•Parents face emotional crises which can impact on their perceived capacity to be involved in decision-making about their infant.•Parents need activation, better information, and emotional support to participate in SDM in the NICU.•SDM skills training and checklists could support healthcare professionals to deliver SDM in neonatal settings.•SDM in the neonatal settings could be facilitated by an integrated psychologist on the team.