Experiences with Childhood Cancer Among Latinx Families: Identification of Informational and Support Needs

Background and Purpose Roughly 1 in 6,500 children and adolescents under the age of 20 will be diagnosed with pediatric cancer and of those, Latinx children generally have poorer health outcomes than their non-Latinx white counterparts (American Cancer Society, 2018). Very few studies have provided information about the experiences of childhood cancer among diverse families (Sobo, 2004). Among the dearth of studies, Munet-Vilaró (2004) highlighted that Latinx families have barriers to treatment services for their children with cancer, often defer to doctors to make clinical decisions for their children, and have specific cultural beliefs that influence their views of the childhood cancer experience. These studies are limited in scope, providing theoretical hypotheses and single-case examples. The objective of this study was to examine the experience of individuals of the Latinx community whose children have been diagnosed with cancer at the onset of diagnosis, the barriers surrounding the diagnostic process, and the resources families identify are needed post-diagnosis for Latinx families.

Methods We conducted 2 focus groups (1 in Spanish, 1 in English) with Latina mothers of children who have or experienced pediatric cancer. Three mothers participated in each group, all children were between the ages of 3 and 10. Focus group respondents were asked “What was it like for you to hear that your son or daughter had been diagnosed with cancer?”, “What was it like during the process of trying to get a diagnosis?”, and “What information or resources do you think, specifically to Latinx families, would be most helpful when a child is diagnosed (with cancer)?”

Results Themes included a sense of community support at the onset of diagnosis and feelings of disbelief, surrealism, and helplessness, with an overwhelm of information, and a need for advocacy in medical settings throughout the diagnostic process. Resources needed specifically for Latinx families included more palatable and simplified information, financial assistance and resources, increased social supports for parent caregivers, and accessible Spanish-speaking providers and translators.

Conclusions and Implications Communication continues to be a major barrier for the pediatric cancer treatment cycle from diagnosis through treatment stemming from language barriers but also the quality, quantity and type of information parents receive. These issues delay diagnosis and treatment, but also impede Latinx parents from having agency during their child’s treatment. Other barriers include the provision of financial resources and assistance considering the complicated insurance and medical billing system with such a high cost illness and also lacking social support for parent caregivers. Implications for the development of intervention programs to support Latinx families and reduce the racial and economic inequality Latinx families facing childhood cancer experience will be discussed.

References

American Cancer Society (2018). Cancer Facts & Figures for Hispanics/Latinos 2018-2020. Retrieved April, 4, 2019 from https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/cancer-facts-and-figures-for-hispanics-and-latinos/cancer-facts-and-figures-for-hispanics-and-latinos-2018-2020.pdf

Munet-Vilaró (2004). Delivery of culturally competent care to children with cancer and their families: The Latino experience. Journal of Pediatric Oncology Nursing, 21(3), 155-159.

Sobo, E. J. (2004). Good communication in pediatric cancer care: A culturally-informed research agenda. Journal of Pediatric Oncology Nursing, 21(3), 150-154.