“We Feel Alone and Not Listened To”: Parents’ Perspectives on Pediatric Serious Illness Care in Somali, Hmong, and Latin American Communities

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

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

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

Optimize continuity of communication

Promote intra-medical team communication

Utilize staffing models that promote continuity of care^21,22

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

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 conditions^23,24

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 biases^23,24

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

Find common ground

Ensure a shared decision-making approach including all desired decision makers

Train staff on shared decision making

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

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

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