Since the 1970s there has been an increase in the prevalence of childhood cancer survivors (CCS) (SEER Cancer Statistics, 2015). While approximately 84% of childhood cancer survivors now survive greater than 5 years, the majority will experience a chronic condition, often related to their cancer treatment(s), later in life (Phillips et al., 2015). Given the high burden of long-term morbidity and potential mortality, long-term follow-up health care is important for this population. However, cancer-related follow-up is suboptimal with fewer than half of CCS receiving recommended long-term care (Milam et al., 2015; Nathan et al., 2008).

Parents of CCS experience significant responsibilities for their child’s health care and medical decision-making (Jones, 2012). Specifically, they take responsibility for coordinating cancer care, interacting with healthcare systems, and oftentimes helping their children transition from pediatric to adult care. The parent-child relationship can facilitate children’s long-term adjustment and achievement, including effective engagement with healthcare (National Academies of Sciences et al., 2016; Schepers, Long, Russell, & Phipps, 2018). Thus, parents’ interactions and open communication with medical providers can lead to improved awareness of health risks on the part of the child, and greater motivation to seek healthcare while gaining autonomy later as an adolescent and young adult (Zamora et al., 2016). Both CCS and their parents are often unaware of the risk of long-term side effects from treatment, which can reduce their engagement in long-term follow-up care (Cherven et al., 2014; Kaye & Mack, 2013; Signorelli et al., 2017).

Patient and family-centered care encourages information sharing (Rawson & Moretz, 2016) among survivors, parents, and medical providers. Parents value communicating with medical providers regarding their child’s specific symptoms (Casillas et al., 2010) and receiving frequent information from healthcare providers (i.e. daily plan of action for the child’s care) (Fisher & Broome, 2011; Uhl, Fisher, Docherty, & Brandon, 2013). Parent and child communication about the cancer experience can also assist survivors with taking an active role in their decision-making (Zwaanswijk et al., 2007) and closing the gaps in information needs about late effects and follow-up care (Vetsch et al., 2017). It is also important to know the sources of information that parents access to understand their child’s cancer diagnosis as research has emerged demonstrating that caregivers of older adults seek information from a range of sources including medical providers (in person an online via portals), mass media and web-based sources, other survivors, and family members (Bangerter, Griffin, Harden, & Rutten, 2019; Oh, 2015).

A history of cancer involves the understanding and sharing of information, such as how to navigate the healthcare system and future healthcare need, and culture and language factors are believed to influence communication and health information seeking and sharing. Language barriers compromise the quality of care received by limited English-proficient individuals (VanderWielen et al., 2014). There is evidence that Hispanics are less likely to access health information from the internet compared to non-Hispanic whites (Peña-Purcell, 2008). Previous research has also suggested that immigrant and Spanish-speaking Hispanic/Latinos from safety net clinics may have less access to the internet and often require family or friend’s assistance in accessing the internet (Selsky, Luta, Noone, Huerta, & Mandelblatt, 2013). Satisfaction with care received and the relationship between the parent and provider may also be affected by language barriers when the parent does not speak English or the provider does not speak Spanish, even when translators are available (Hadler, Chen, Gonzalez, & Roby, 2012; Mier-Chairez, Arellano, Tucker, Marquez, & Hooper, 2019; Taira, Kim, & Mody, 2019). Hispanic cultural values such as familismo (Organista, Marín, & Chun, 2018), which emphasize the importance of unity within the immediate and extended family, including the responsibility to take care of family members and discussions for medical decision-making may influence the frequency of communication within parents and CCS. For example, a study among Spanish-speaking Latino/Hispanic patients with language concordant providers found that patients relied on family members for communication, not due to language barriers but to help manage the decision-making (Zamudio, Sanchez, Altschuler, & Grant, 2017). Yet, few studies have examined the role language plays in cancer-related information seeking, communication between CCS, their caregivers, and medical providers (Levit, Balogh, Nass, & Ganz, 2013; McGinnis, Stuckhardt, Saunders, & Smith, 2013).

Given the importance of communication in cancer care between family members as well as with medical providers, and the documented healthcare disparities as a result of language barriers, the purpose of this exploratory study was to examine and explore how parent language preference affects information seeking, communication, and satisfaction with medical care. The aims of this study were (1) to describe the sources of information that parents of CCS use for accessing cancer-related information by parent language preference and (2) to examine the association between language preference and the health care-related satisfaction and health communication experiences of Hispanic and non-Hispanic parents of CCS.

Data for this analysis were from the Project Forward pilot study, a cross-sectional study that used population-based survey methods to evaluate factors associated with receiving follow-up care among CCS and their parents’ role in their cancer care (Milam et al., 2015). CCS were selected from the Los Angeles Cancer Surveillance Program, the Surveillance, Epidemiology, and End Results (SEER) program cancer registry for Los Angeles County (“Cancer Surveillance Program,” 2019). Eligibility included being diagnosed with cancer between the ages of 5–18 and being treated between 2000 and 2007 at two large pediatric medical centers in Los Angeles County. CCS with any cancer except for Hodgkin Lymphoma (who were ineligible because they were enrolled in another cancer registry study), who were at least two years from diagnosis, and who were aged 15 to 25 years in 2009 were eligible for this study. Exclusion criteria included inability to speak English or Spanish, and patients deemed to be incapable of completing a survey due to illness or significant cognitive impairment.

Parents of CCS were recruited via two methods. If CCS were minors, an initial packet was mailed to the parent inviting both the parent and child to participate in the study. If CCS were adults, materials were mailed directly to patients and then patients were asked for parental contact information and permission to mail survey materials to the parent. Both CCS and their parents received a $20 gift card as compensation for the completion of the survey that took 30–45 minutes to complete. Participants had the option to complete the survey by paper, online or over the phone (in Spanish or English).

All parents who participated provided informed consent for themselves. For parents of minor CCS (ages 15–17), parental permission was obtained for requesting their children’s participation in the study. Minor CCS then provided written or verbal assent for their own participation. CCS ages 18 or older were contacted directly and provided informed consent. All study procedures were approved by the California Committee for the Protection of Human Subjects, California Cancer Registry, and by human subjects’ committees at the University of Southern California, Children Hospital of Los Angeles, and Miller Children’s Hospital.

Among 470 eligible CCS, a total of 171 parents participated; however, for 11 of them, their CCS did not participate due to illness or other reasons. Thus, of these 171, our analytical sample consisted of these 160 participants were both parent and CCS patient responded to the survey. The overall response rate for parents was 34.2% (Hamilton et al., 2018). There were differences in response rate by ethnicity, such that Hispanic parents (36.6% vs 46.7%, p=0.001) were less likely to respond compared to non-Hispanic white parents, and parents of younger CCS were more likely to respond than those of older CCS(Hamilton et al., 2018).

We found that Spanish-speaking parents were much more likely to talk to their CCS about cancer related follow-up care than either the English-speaking Hispanic parents or the non-Hispanic parents. However, if the CCS had a regular doctor, levels of satisfaction with care received by their CCS did not differ by parent’s ethnicity or language. Patterns differed regarding sources for receiving health information, with Hispanics (both Spanish and English speaking) relying more on hospital sources for information about their child’s cancer than non-Hispanics, who utilized the internet and social media.

While few studies have assessed characteristics of health information provided among Hispanic parents and childhood cancer survivors, Miller et al. (2018) found that Hispanic young adult CCS, like we found for their parents, most frequently reported receiving cancer-related information from hospital sources. Our results showed that Hispanic parents (regardless of preferred language) relied more on hospital sources for cancer-related information and that the Spanish-speaking Hispanic parents were the least likely to use the internet or social media to look for information. This might suggest that these are difference levels of comfort or access in seeking cancer information online among Hispanic parents.

These finding support previous studies which have shown that Spanish-speaking Hispanics report greater difficulties accessing cancer information (Vanderpool, Kornfeld, Rutten, & Squiers, 2009) and Hispanics who are not comfortable speaking English have lower trust in health information from the internet (Clayman, Manganello, Viswanath, Hesse, & Arora, 2010). Previous findings have shown that both U.S. born, and foreign-born Hispanics do not use the internet or access health information online at the same rate as non-Hispanic whites (Gonzalez, Sanders-Jackson, & Wright, 2019). Furthermore, considering that there were differences in parents’ level of education among Hispanics, this might also be a result of health literacy, as it is known that individuals that report lower levels of education also have lower levels of health literacy (Kutner, Greenburg, Jin, & Paulsen, 2006), and English fluency might be barrier to internet use. There are also differences among Hispanic demographic subgroups in the use of mobile phones or tablets as a form of internet, where Hispanic adults with less than high school education and with a family income of less than $30,000 are less likely to access the internet via a mobile device (Anna Brown, 2016). Among Central and South American Latino subgroups previous findings have also shown that they have lower odds of using a patient portal to email health care providers than non-Hispanic whites (Gonzalez et al., 2019), however, family and friends assistance facilitated their gathering of information from the Internet (Selsky et al., 2013).

In contrast to the internet sources, hospitals were most important source of information for Hispanics, and especially Spanish-speaking families, to learn and communicate about medical history and future risks with medical providers. Future studies should assess whether the information that these families are receiving in the hospital are in a format that is culturally congruent to ensure that health communication is maximized (Schim & Doorenbos, 2010). Likewise, more information on what other groups are receiving through the internet should be evaluated.

We found no racial/ethnic difference in parent satisfaction with their child’s medical provider among those who reported having a regular doctor. Our results differed from a recent study of caregivers of pediatric cancer patients which found that Spanish-speaking caregivers reported higher satisfaction with care compared to English-speaking caregivers (Zamora et al., 2016). In our study Hispanics and non-Hispanic parents all rated their child’s medical provider very highly. This is an important finding because greater satisfaction with cancer care has been found to be associated with an increase in confidence in managing communication with provider and health related quality of life among Hispanic adults who are cancer survivors (Moreno et al., 2018). Future research is needed with larger sample size and with heterogenous group of Hispanic samples.

There were differences in communication patterns based on parents’ language preference. Spanish-speaking parents reported more frequent communication regarding follow-up care with their child. One explanation for this finding, is that greater communication between Hispanic parent-child compared to non-Hispanics may be reflective of familismo, a fundamental cultural value for Hispanics that expresses strong loyalty, reciprocity, and solidarity among family members (Organista et al., 2018). While this finding supports the broader application of patient and family-centered care and the value of health information sharing (Clay & Parsh, 2016), it may also indicate that among Spanish-speaking Hispanic parents of CCS (where the vast majority of children speak English), CCS become language brokers, where the child is responsible for gathering and sharing medical information for the parent (Kam, 2011). Research is needed to determine the extent to which CCS from Spanish-speaking homes act as language brokers and whether this positively or negatively impacts communication throughout the cancer experience. This is particularly important because federal guidelines indicate that non-professional interpreters (including family members) should not be utilized in healthcare settings (VanderWielen et al., 2014), and medical practitioners have raised concerns regarding children acting as language brokers because of fidelity of the translation and the complexity of information being disclosed (Mier-Chairez et al., 2019; Vikki, 2014). Despite efforts to improve communication through the availability of translators and interpreters (Hadler et al., 2012), language services are underutilized and there is a continued use of non-professionals interpreters (including family members, commonly known as language brokering) (Hadler et al., 2012; Mier-Chairez et al., 2019; Taira et al., 2019).