ABP Roadmap Email Header _2_.png

Dear Friend of Roadmap,

 

On June 19, 1865, two years after the Emancipation Proclamation became law, thousands of slaves in Texas received news that they were free. This day has become known as Juneteenth – the oldest nationally-recognized commemoration of the ending of slavery in the United States.

 

Juneteenth became a federal holiday last year. May this day inspire us to address racial disparities and work for equitable health outcomes.

Children with chronic conditions and their families shoulder enormous emotional burdens as they deal 24/7 with the ongoing weight of illness and navigating health systems. These stresses are compounded for families of color. In spring 2021, The Roadmap Project hosted a panel of three Black parents of children with chronic conditions and one young adult patient to discuss the “Impact of Being Black on Living with a Chronic Condition.”

We asked the panelists what actions clinicians could take to make a difference for Black patients with chronic conditions and their families. The following are the panelists’ suggested strategies. 

Create a safe space in the clinical environment for children and families of color: “Even the pictures, like the marketing around the hospital and the clinic practice matters…the magazines, the posters, the coloring books, the dolls. Everything that you [do] to paint the picture… is one more sign that we can breathe a little bit."

 

Establish trusted relationships with children and families of color: “It was very helpful when I had their undivided attention. Sit down and be able to actually be present. When they looked me in the eye and stayed there as if they were checking in with me, asking the question about ‘What's going on, how am I doing, how's everything been going?’ Over time a couple of those visits helps to build in that trust that, ‘Oh they're going to ask me how I'm doing. They're going to want to know what's going on with me.’ And so, it starts to become a rhythm and it becomes comfortable and you can start to peel back the layers.”

 

Acknowledge that many aspects of health care are often negatively impacted by racism or bias for families of color. It may be helpful to: “Keep in mind the different outcomes, mortality rates, and the health disparities in regard to the minority patients that you're seeing. Mention them. Bring them up to let us know that you're aware. [Acknowledging these factors] might be a little bit awkward, but it's still those first stumbling blocks of conversation that [may help] you begin to build that relationship.” Another panelist agreed, “Be willing to have these uncomfortable conversations.”

  

Recognize when current events weigh heavily on patients and families (such as the murder of George Floyd, the Buffalo supermarket mass shooting, and many others): “If something has just happened in the news, saying, ‘It is a really hard time right now because of what has happened in X.’ This [acknowledgement] can help the patient and family know that you are aware.”

 

Advocate for diversity and inclusion within institutions: “I would challenge everyone to go back to their organizations and try and make them more inclusive and work from the inside out because representation matters. Advocate within your organization for building new sourcing pipelines and advocate for employee resource groups where you can have these conversations and advocate working with your HR. Make it look different.”

Click Here to Listen to the Entire Recorded Discussion

The Roadmap Project is committed to addressing disparities and ensuring equity in the care of children with chronic illness and their families – there is still much work to be done and we encourage you to continue to make a difference.

 

Sincerely,

The Roadmap Project

[email protected]

www.roadmapforemotionalhealth.org

ABP Foundation Logo _MASTER_ black - Medium 140_ _002_.png

The Roadmap Project is made possible with support from the American Board of Pediatrics Foundation and the David R. Clare and Margaret C. Clare Foundation.

Sun M, Oliwa T, Peek ME, Tung EL. Negative Patient Descriptors: Documenting Racial Bias In The Electronic Health Record: Study examines racial bias in the patient descriptors used in the electronic health record. Health Aff (Millwood). 2022:10.1377/hlthaff. 2021.01423.


Himmelstein G, Bates D, Zhou L. Examination of Stigmatizing Language in the Electronic Health Record. JAMA Netw Open. 2022;5(1):e2144967.


Berry JG, Bloom S, Foley S, Palfrey JS. Health inequity in children and youth with chronic health conditions. Pediatrics. 2010;126(Supplement_3):S111-S119.


Trent M, Dooley DG, Dougé J, Cavanaugh RM, Lacroix AE, Fanburg J, et al. The impact of racism on child and adolescent health. Pediatrics. 2019;144(2).


Matthew AJ, Clark MA, McDavid LM. Combating racism: the role of the pediatrician. Pediatr Res. 2021;90(4):708-710.