Introduction by Vice Chancellor Steve Goldstein
In this installment of our Bridging the Gap series, Michelle Fortier, PhD, brings our attention to a problem experienced by Latinx children who have cancer.
Fortier, a pediatric psychologist, is an associate professor in UCI Bill and Sue Gross School of Nursing’s departments of anesthesiology & perioperative care and psychology & social behavior. She is also on staff in the department of pediatric psychology at Children’s Hospital of Orange County (CHOC) and is co-director of the UCI Center on Stress and Health. Fortier specializes in cognitive-behavioral therapy for children with chronic pain through the Pain Management Center at UC Irvine, a multidisciplinary research collaboration between UCI Health and CHOC. Fortier’s work has shown that the pain management treatment of Latinx children – and their outcomes – are too often inadequate when compared to non-Latinx white children. Besides the immediate impact of not assisting a child in need, researchers have found that there are long term consequences to poorly managed pain that amplify health inequities for Latinx patients when they are adults including changes in their physiological responses to pain and avoidance of preventive healthcare to support wellness.
Following the UCI Health Affairs commitment to Discover, Teach, Heal, Fortier does not stop with elucidating the problem, but seeks remedies. Her UCI-CHOC team partnered with community members to create Corazones Unidos Por Una Vida (Hearts United for Life), a project that educates healthcare providers and empowers Latinx families by helping them understand their child’s diagnosis, teaches them how to manage pain, and offers guidance to support the child and the family. I am inspired by the work of UCI experts like Fortier and her peers; they are united in the UCI One Health alliance that is reshaping the future of healthcare to deliver patient-centered, whole-person, data-driven, team-based care for all the communities that we serve.
Latinx Children with Cancer, Culturally Appropriate Support for Families
By Michelle Fortier, PhD
Associate professor, Sue & Bill Gross School of Nursing; Clinical psychologist and pediatric pain expert, UCI Center on Stress and Health
Pediatric Pain and Long-term Health Consequences
Pediatric pain may not be the first topic that comes to mind when you think of health equity. Still, it is one of particular significance in achieving better health outcomes because poorly managed pain in children can have a cascade of lifelong adverse effects. It can lead to avoidance of proper healthcare in adulthood, such as not scheduling needed immunizations. Further, there is growing evidence that poorly managed pain impacts us physiologically and may have long-term impacts on our pain response system.
When I joined UCI and Children’s Healthcare Orange County (CHOC) in 2008, I became increasingly aware that current clinical practices for pediatric pain management were not effective for patients in every cultural context, especially those from Latinx and Spanish-speaking families. Latinx children and children of Spanish-speaking parents in Orange County receive fewer analgesic doses to manage pain and report higher levels of pain, as well as poorer quality of life during cancer treatment.
The academic literature reflects these disparities on a broader scale. More than 30% of Spanish-speaking caregivers of patients with pediatric cancer surveyed reported feeling that their child would have received better care if English was their primary language. Further, studies I’ve been a part of found Spanish-speaking Hispanic parents endorsed more misconceptions about children’s pain expression compared to the other groups and underscored the importance of assessing parent background and cultural beliefs as predictors of at-home pain management. Overall, Latinx children with cancer generally have poorer health outcomes than their non-Latinx White counterparts.
Addressing Disparities in Cancer-related Psychosocial Outcomes through Culturally Sensitive Health Literacy Intervention
To help address these health inequities – which expand far beyond the pediatric pain disparity that first caught my attention – we partnered with the community and CHOC to develop Corazones Unidos Por Una Vida, which translates to Hearts United for Life. It is a prototype support program for Latinx families with children undergoing cancer treatment at CHOC. The program is unique because it is specifically designed to be culturally relevant to Latinx families in Orange County.
Corazones Unidos Por Una Vida consists of twelve comprehensive and synchronous virtual sessions over the course of twelve weeks. The session focuses range from social work case coordination to a culinary medicine cooking demonstration, in which a renowned chef teaches participants to make recipes with a special emphasis on cancer-specific nutrition. Other popular sessions include teaching caregivers cancer-specific aromatherapy, acupressure, and massage techniques for their children.
In addition to these sessions, we developed a resource that distilled what is classically a chock-full binder of information presented in English into a simple Spanish language brochure that captures essential details for the families of children with cancer. It lists the most relevant facts about their child’s diagnosis and treatment, as well as information about their providers and contact information for important entities, including the child’s oncologist, social worker, pharmacy, etc.
Initial Intervention Results and Potential for Broader Program Implementation
At the conclusion of the Corazones Unidos Por Una Vida prototype, we interviewed each family to gather feedback about the program. The feedback received was overwhelmingly positive. Perhaps even more encouraging, though, is the organic peer navigation our team has observed as a direct result of the program. Corazones Unidos Por Una Vida families have used what they learned in the program to help other Latinx families navigate the medical environment. Additionally, CHOC wants to adopt the brochure we developed to offer to every Spanish language family in the Cancer Center.
Still, there’s more work to be done to address knowledge gaps and health disparities surrounding palliative care and pediatric oncology. Our immediate next steps are to conduct a preliminary efficacy trial to benchmark changes in quality of life in health literacy and satisfaction with treatment, and adjust the program based on feedback received from pilot participants. We have submitted a grant proposal to test the fully virtual format versus a hybrid model where some of the sessions are held in person. Looking ahead, we hope to disseminate Corazones Unidos Por Una Vida’s approach more broadly and move the needle for psychosocial outcomes and health equity at large.
