Table 2.

Recommendations for Health Care Staff and Health Care Systems

Themes	Parents Want To...	Recommendations for:
		Health Care Staff	Health Care Systems
Informed understanding	Understand their child’s illness and medical plan Understand with quality interpretation	Be patient Speak in clear terms and do not use medical jargon Ask about understanding and clarify any misunderstandings/misconceptions Be sensitive to emotional words/topics Allow time for processing and emotional responses Include other family members as needed For LEP Parents Use interpreters for all medical conversations with LEP parents Use in-person interpreters as much as possible	Train staff in communication with clear simple English and supportive images, in patients’ preferred language Ensure access to professional interpreter services (in-person preferable to remote)18,19,20
	Be prepared	Express what is known, what is not known, and what the proposed plan will be Explain breadth of options Provide medical explanations to family members as needed	Ensure that staffing and time availability reflect commitment to provide for patient-centered care Establish processes to explain the health care system and everyone’s roles
	Have consistent team plans	Optimize continuity of communication Promote intra-medical team communication	Utilize staffing models that promote continuity of care21,22
Compassionate interactions	Feel cared about	Express caring both verbally and through nonverbal interactions Get to know the patient and family Allow time for processing and emotional responses Be sensitive to emotional words/topics
	Feel culturally and religiously respected	Avoid generalizations or stereotypes about culture given variations within communities Recognize, respect, and respond to cultural traditions and role of spirituality in how parents experience illness and healing Support parents’ access to religious/culturally relevant support services	Train staff in cultural humility, working with diverse communities’ cultural and religious beliefs, and societal conditions23,24
	Feel safe, and not discriminated against	Know that parents may be wary of power imbalances and be vulnerable to feeling they are being discriminated against Acknowledge mistakes/errors	Train staff about racism and implicit biases23,24
Respected parental advocacy	Be heard for parental wisdom	Listen to and respect parents’ knowledge of their child Respect parental need for involvement and advocacy Be open to alternative ideas presented by parents	Train staff to respect parents as partners in care for children
	Be respected for authority to make decisions	Find common ground Ensure a shared decision-making approach including all desired decision makers	Train staff on shared decision making
	Not be harmed after advocating	Recognize parents’ fear that speaking up may harm their relationship with staff and result in poor care	Train staff to respect parents as partners in care for children
	Have continuity in medical care	Reinforce processes that support continuity Explain current providers’ roles, and Communicate with/involve primary clinician, refer back to their primary clinician	Utilize staffing models that promote continuity of care
	Receive support	Refer to social services Refer to parental support groups Refer to palliative care when appropriate Involve spiritual care for patients and families	Create processes to connect parents with social support systems that address unmet health care needs Create processes to connect parents with other parents with similar lived experiences25 Provide cultural navigators to help remove and reduce barriers26

LEP = limited English proficiency.