“We feel alone and not listened to”: Somali, Hmong and Latin American Parents’ Perspectives on Pediatric Serious Illness

• DOI: 10.1370/afm.22.s1.6714
• Publication Date: 2024-11-28T19:28:57Z
• Authors: Kathleen Culhane-...; Sey Lee; Pilar De La Parra; Jennifer Needle; Jinhee Cha; Shannon Pergament; Rodolfo Batres; Amran Ahmed
• Keywords: Somali

<h3>Context:</h3> The experience of ethnically diverse parents children with serious illness in the US healthcare system has not been well studied. Listening to families from these communities about their experiences could identify modifiable barriers quality pediatric care and facilitate development potential improvements. <h3>Objective:</h3> Identify parents' perspectives good healthcare, poor needed improvements for children's Somali, Hmong, Latin American communities. <h3>Study Methods Analysis:</h3> Qualitative community-based participatory action research (CBPAR) study focus groups individual interviews. Common themes were identified inductively through immersion-crystallization, a analysis process that included Americans as team community advisory board members. <h3>Setting:</h3> Minneapolis-St Paul metropolitan area. <h3>Participants:</h3> Twenty-six parent participants (eight ten eight American) recruited local clinics hospitals. <h3>Intervention:</h3> NA. <h3>Outcome Measures:</h3> <h3>Results:</h3> Parents desired two-way trusting respectful relationships medical staff. Three supported this trust, based on challenging supportive healthcare: 1) Informed understanding allows understand prepare child's care; 2) Compassionate interactions staff allow feel are cared for; 3) Respected parental advocacy wisdom is heard. Effective communication one key improving understanding, expressing compassion, partnering parents, including interpretation low-English proficient parents. <h3>Conclusions:</h3> shared desire authentic improved health processes. Processes enhance communication, support, connection, system-level interventions driven by voices, hold reducing disparities illness.