Hospital Diversity, Equity, and Inclusion Efforts: Perspectives of Patient and Family Advisors

Patient and family advisory councils are common within children's hospitals. However, lack of diversity among patient and family advisors (PFAs) may result in exclusion of crucial perspectives and perpetuate inequities. We sought to understand PFA perspectives on how children's hospitals should approach: (1) recruitment and support of PFAs from groups at greater risk of health inequities; and (2) development of meaningful partnerships with PFAs or patient and family advisory councils on institutional diversity, equity, and inclusion (DEI) efforts.

We conducted a qualitative study of PFAs of children's hospitals from communities at greater risk for health inequities based on self-identified race, ethnicity, gender, socioeconomic status, disability, language, or other factors. Focus groups were virtual and group discussions were recorded, transcribed, and analyzed using inductive qualitative analysis.

In total, 17 PFAs participated across 5 focus groups (4 in English, 1 in Spanish). We identified 6 themes: (1) PFA diversity is necessary to understand existing health inequities; (2) diversity needs to be considered broadly; (3) recruiting for diverse PFAs requires intentionality, visibility of PFACs within and outside of the hospital, and deliberate connections with families and communities; (4) efforts to increase PFAC diversity must be accompanied by work to develop inclusive environments; (5) diversity efforts require meaningful engagement and equity; and (6) diverse PFACs can enrich DEI efforts but require organizational commitment and follow-through.

Insights from our qualitative study of PFAs can be used by healthcare systems to foster diversity and inclusion in PFACs and advance hospital DEI efforts.