In the high-stress environment of pediatric intensive care units (PICUs), obtaining consent for research studies poses significant challenges. These challenges are compounded by various sociodemographic factors, potentially leading to disparities in research participation. A recent study conducted at the Children’s Hospital of Philadelphia has shed light on how race, ethnicity, language, religion, and socioeconomic indicators influence research enrollment in PICUs.
A retrospective cohort study reviewed data from 3,154 children eligible for prospective consent in the PICU between July 1, 2011, and December 31, 2021. The study analyzed the impact of race and ethnicity, language, religion, and the Social Deprivation Index (SDI) on the likelihood of being approached for research and subsequently providing consent.
Key Findings
The study revealed that Black and Hispanic families, as well as families speaking Arabic and other non-English languages, had lower rates of being approached for research. This trend was also observed among Muslim families and those with higher SDI scores. When approached, Black children had significantly lower odds of giving consent compared to their White counterparts. Specifically, the unadjusted odds ratio (OR) for Black children was 0.73, and the adjusted OR was 0.68, indicating a persistent disparity even after accounting for other variables.
The mediation analysis provided further insight, showing that 51.0% of the reduced odds of consent among Black individuals could be attributed to the lower probability of being approached. This highlights a critical area for intervention to increase research participation among underrepresented groups.
Implications for Future Research
This study underscores the need for targeted strategies to address the barriers faced by minority groups in PICU research settings. By understanding the factors that contribute to lower approach and consent rates, researchers and healthcare providers can develop more inclusive and equitable approaches to patient recruitment.
Concrete Takeaways
Based on the findings, here are actionable insights for improving research participation in PICUs:
- Implement culturally sensitive communication practices to better engage non-English speaking families.
- Develop targeted outreach programs to address the specific needs of Black, Hispanic, and Muslim families.
- Increase awareness and training for healthcare providers on the importance of equitable research practices.
- Utilize mediation analysis to identify and mitigate barriers to research participation among underrepresented groups.
In conclusion, the study highlights significant sociodemographic disparities in PICU research consent rates, driven by differential approach rates. Addressing these disparities requires targeted efforts to ensure that all families have equal opportunities to participate in research, thereby enhancing the inclusivity and generalizability of PICU research findings.
Original Article: JAMA Netw Open. 2024 May 1;7(5):e2411375. doi: 10.1001/jamanetworkopen.2024.11375.
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