Disparities in “Difficult Relationships” Between Clinicians and Parents of Children With Cancer: How We Mend and Move Forward

Although difficult conversations are well-studied in pediatric oncology, difficult relationships are less understood. This is important because difficult relationships between patients, their caregivers, and clinicians are common, may break therapeutic alliances, and contribute to clinician burnout and family distress. What makes a parent-clinician relationship difficult? What is the parent’s perspective? What is the clinician’s perspective? Are some families more at risk to experience these challenges than others? How can we repair a damaged relationship?

In a rigorous survey-based investigation of parents of children with cancer and their clinicians (physicians and nurse practitioners) at 2 large academic centers, Mack and colleagues provide valuable new-found answers to some of these questions.¹ Specifically, investigators invited parents to identify their primary oncology clinicians and then both parties completed versions of a survey querying relationship challenges. Based on the group’s previous work defining key factors of challenging relationships, the parent version focused on perceptions of respect, trust, and listening. Challenging relationships for parents were defined as any single response to a question in the lowest 2 of 4 categories. For example, to the question “How much do you trust your child’s oncology provider?” a response of “not at all” or “somewhat” was categorized as a challenging relationship. The clinician survey focused on perceived time and effort required to deliver high quality care. A relationship was defined as challenging by clinicians if a single response included the most negative 3 ratings on a scale from 1 (“not at all”) to 6 (“a great deal”). For example, a negative response to “How time-consuming has it been to work with this patient’s parents?” was considered challenging. Parent surveys also included validated instruments to assess symptoms of anxiety and depression, and both parents and clinicians self-reported demographic data such as race, ethnicity, and level of educational attainment.

Results suggested 3 major findings. First, multivariable analyses adjusting for parent gender suggested that parents who identified as Asian or “other” racial and ethnic minority groups, who reported high school or less education, and who endorsed symptoms of anxiety were more likely to experience challenging relationships than White parents, those with more education, and those without anxiety. Small similar differences were seen among Black and Hispanic parents in bivariate analyses, although these findings were not statistically significant in multivariable analysis. Parents also reported challenging relationships when they received mixed messages from clinicians or perceived a lack of patient-centeredness during transitions of clinical care.

Second, there were no consistent parent or patient characteristics associated with clinician-perceived challenges. Third, a significant proportion of challenging relationships experienced by parents went unrecognized by the clinician. Indeed, concordance between parents and clinicians regarding which relationships were challenging was less than 10%.

It has long been recognized that Black and Hispanic individuals experience discrimination in the US health system, which has led to marked disparities in health outcomes. This study adds parents who identify as Asian or “other” racial and ethnic minority groups to the list of caregivers who may experience fewer positive therapeutic relationships with clinicians. Specifically, parents in this study identified barriers to therapeutic alliance by disagreeing with statements that the clinician “takes the time to listen to [my] concerns” or “respects [my] opinion,” or agreeing with statements such as “[my] child is not getting the best possible medical care” or that the clinician “may make mistakes that could affect [my] child’s care.” These are concerns we cannot afford to ignore.

The existence of racial and ethnic disparities in challenging parent-clinician relationships is an important addition to growing literature that communication, particularly with racial and ethnic minority families in pediatric oncology, is not equitable. Disparities exist in critical points of communication with families of children with cancer including discussion of prognosis and end-of-life. Previous studies suggest pediatric oncology clinicians incorrectly assume that Black and Hispanic families prefer less information about prognosis, and that Asian, Black, and Hispanic families have poorer comprehension of medical information compared with White families.² Similarly, a recent cohort study of pediatric palliative care referrals found that White children spent less time (3 days) in the hospital during the last 3 months of their lives, compared with Asian children (12.5 days), Black children (8 days), and Hispanic children (14 days).³ The root cause to these disparities requires further study, and may include bias, racism, and cultural, and language differences.

A potential contributor to these problems in communication is failure to achieve a diverse workforce in pediatric oncology. Unfortunately, this study mirrored the US national deficit of racial and ethnically diverse clinicians with only 1 Black clinician and 2 Hispanic clinicians out of 80 physician and nurse practitioner participants. While investigators in this study did not find that racially matched clinicians and families had better relationships, they also lacked the power to do so. Organizations like the National Academy of Medicine and the American Society of Clinical Oncology have called for diverse clinicians to match an increasingly diverse patient population, recognizing that diversity enhances cultural competency, and improves patient satisfaction and trust.⁴

Additionally, miscommunication related to differences in language, religion, and cultural understanding of health can adversely affect health outcomes in children. Although the Mack et al survey did not find differences among parents who spoke English compared with those who did not speak English, there were differences seen in among parents who received mixed messages from clinicians or perceived a lack of patient-centeredness during transitions of clinical care. In this survey, clinicians defined “challenging” based on the time needed to provide care for a given patient and family. This begs the question: if taking the necessary time to explore patient-centric or cultural needs translates to challenging, how can clinicians expect to build culturally humble, respectful, and therapeutic relationships?

This study suggests that parents reporting symptoms of anxiety were more likely to experience challenging relationships. Although the cross-sectional nature of this study could not determine the direction of these associations, this finding underscores the concern that parents with poor mental health are another group at risk. Those with high psychological or social distress may be less able to care for their ill child and themselves.⁵ Indeed, care for pediatric patients with serious illnesses like cancer must be holistic and include comprehensive psychosocial care for children and their caregivers.⁶ Such comprehensive support is especially important for racial and ethnic minority families and those with less income because such groups may be additionally underserved in mental health compared with their White counterparts and those with more income.⁷

Fortunately, we can mend and move forward. The first step is to be aware of parent dissatisfaction, and the only way to do that is to ask. We might start by stating, “It is important to me that we work well together to take care of your child. What makes a successful relationship, to you? How can I do my job better?” Next, we listen to the answer. Finally, it is never too late to rebuild trust, respect, and therapeutic alliance with patients, and no relationships are without their moments of tension. The key is to be purposeful and persistent. Such effort is critical when caring for families whose trust we have historically not earned, whose respect we have not upheld in practices of discrimination and racism of all forms, and whose voices we have often been silenced. An effective and positive therapeutic relationship is required to achieve quality care for patients. As Mack and colleagues acknowledge, this is the standard of care and all children and their families are entitled to it equally.

Published: November 17, 2021. doi:10.1001/jamanetworkopen.2021.32873

Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2021 Karvonen KA et al. JAMA Network Open.

Corresponding Author: Abby R. Rosenberg, MD, MS, MA, Palliative Care and Resilience Lab, Seattle Children’s Research Institute, 1920 Terry Ave, CURE-4, Seattle, WA 98101 (abby.rosenberg@seattlechildrens.org).

Conflict of Interest Disclosures: Dr. Karvonen is supported in part by the Ruth L. Kirschstein National Research Service Award T32CA009351. Dr. Rosenberg reported grants from National Institutes of Health, the American Cancer Society, Arthur Vining Davis Foundations, Cambia Health Solutions outside the submitted work, Conquer Cancer Foundation of ASCO, CureSearch for Children’s Cancer, and the Seattle Children’s Research Institute. No other disclosures were reported.

Disclaimer: The opinions herein represent those of the authors and not necessarily those of their institutions or funders.