TABLE 1.

Factors and strategies to promote parents’ participation

Factors	Strategies
Alternating ‘expert’ role (accept that everyone is morally equivalent)	Listen to parents and avoid interruption
	Ask ‘open-ended’ questions to parents: “What do you need to help you to understand the situation?” or “What is your understanding of the situation?” or “What did you discuss with the medical team previously?”
Sharing ‘weighted’ information	Disclose the limits, risks and benefits of treatment options
	Describe the limits of statistical information when looking at the outcome for premature infants
Offering options	Discuss treatment options including options that may not be recommended from a medical perspective: “Would you like to discuss options that I may not have mentioned?” or “Have you thought about another approach that you would like to discuss with me?”
	Offer treatment options based on the infant’s expected or possible clinical progression: “In the case that your child does not respond to resuscitation manoeuvers, would you like to discuss limitations of care?”
Provide time to think	Mention that there is no need for an immediate answer or, if in an urgent situation, offer a few minutes for the parents to discuss alone
	Offer a follow-up visit
Trustful relationship	Make eye contact and engage in active listening
	Validate parents’ emotions, reactions and thoughts: “I realize that it is hard for you to discuss this issue” or “What you think is very important to your baby’s care?”
	Validate the decisions that were made in the past and build on them if needed: “What you have previously decided with the medical team is very appropriate, …”
	Ask parents how they would like to be supported: “Is there anything that I can do to help you?”

Adapted from reference 11