In an article being early released this week in Pediatrics, Dr. Ijeoma Julie Eche-Ugwua (of the Dana-Farber Cancer Institute and the Tan Chingfen Graduate School of Nursing, University of Massachusetts Chan Medical School) and colleagues from across the US conducted a qualitative study focusing on the psychosocial needs and support systems of African-American parents of children who had received cancer care (10.1542/peds.2024-070319).
This unique study included in-depth semi-structured interviews of English-speaking parents who self-identified as African-American and had children (<18 years of age) with cancer, either on or off treatment, at one of 3 US pediatric cancer centers. The lead author, who self-identifies as Black and has expertise in pediatric oncology nursing, conducted all interviews. The study focused on this population because African-American parents are underrepresented in intervention research aiming to reduce stress among parents of children with cancer.
I promise to summarize the study, but I encourage you to first immerse yourself in the topic by reading the “additional exemplary quotes” from study participants in Table 3. The study team beautifully shares the deep heartbreak experienced by parent participants, and this understanding frames the study.
The authors used an approach called Grounded Theory, in which researchers seek to construct theory from data, using a constant comparative approach to analyze data, rather than beginning with a specific hypothesis. Each structured interview informed the next, as themes were identified and organized, and the interview guide was iteratively revised throughout to better understand the participants’ views.
Forty-five African-American parents were interviewed, of whom most were college-educated women from single-parent homes earning <$50,000 annually; a subgroup of 12 participants were re-interviewed to “deepen or dispel” identified themes.
The study team summarized the longitudinal distress participants experienced as “Magnified Existential Crisis” with:
► External threats related to structural racism, including:
○ Economic hardship (with job loss and resource scarcity) and
○ Medical care perceived as disconnected and discordant, with poor racial representation on the provider team a major barrier.
These threats were mitigated by:
► Coping resources identified as:
○ Religiosity and spirituality, even with perceived testing of their faith
○ Optimism, drawing on a mindset that stresses a positive outlook
○ Bolstered communication, including prayer and talking to family and clinicians.
In this close look at the experiences of historically marginalized people, the effects of race-discordant care and of a widespread perception of being misunderstood were deeply felt by participants.
This study uniquely lets us “walk in another’s shoes” and emphasized to me that parental stress may be intersectional: when race-related care disconnection and lack of racial representation on the medical team combine with the extraordinary anxiety of having a child with a cancer diagnosis, this creates an intolerable personal crisis.
We have the opportunity and challenge to acknowledge and recognize cultural differences, and then to find ways to create better treatment relationships, so that every parent of a child with cancer can experience warmth, empathy, and connectedness during this period of extraordinary stress in their lives.
