PURPOSE Parent engagement in childhood cancer treatment is central for positive outcomes. Aspects of fruitful engagement have been described mainly in high-income countries (HICs) where family autonomy is valued, health care provider-patient relationships are less hierarchical, and active family participation in health care is welcomed. In many low- and middle-income countries (LMICs), these aspects are not always valued or encouraged. We explored childhood cancer treatment engagement in Latin America as part of a larger engagement study in 10 LMICs worldwide. METHODS A qualitative investigation was conducted with parents (with the exception of one grandmother and two aunts in loco parentis; n = 21) of children with cancer in El Salvador, Peru, and Mexico. Participants were recruited by two Childhood Cancer International foundations and two local hospitals. A pediatric oncology psychologist and a medical anthropologist (experienced, native Latin Americans researchers) conducted focus-group discussions and in-depth interviews that were recorded and transcribed, and analyzed data. RESULTS Parents in the three countries actively engage in their child’s treatment, despite challenges of communicating effectively with health care staff. Hierarchical health care provider relationships and generalized socioeconomic disparities and cultural diversity with health care staff notwithstanding, parents find ways to navigate cancer treatment by exerting their agency and exploiting resources they have at hand. CONCLUSION In Latin America, engagement materializes in ways that are not necessarily reflected in existing literature from HICs and, thus, engagement may seem nonexistent. Health care teams’ recognition of parents’ substantial sacrifices to adhere to complex demands as treatment engagement, may positively impact the children’s (and family’s) quality of life, treatment experience, adherence, and posttreatment circumstances.
Background: Over the last decade, the population of childhood cancer survivors has rapidly increased in Latin America, opening a long chapter of challenges for healthcare providers in these countries to provide follow-up and adult care.Aim: In the process of exploring childhood cancer parent and patient engagement in resource-limited settings, we highlight the challenges faced by Latin American survivors from El Salvador, Mexico, and Peru as they transitioned from receiving cancer treatment to life as a cancer survivors.Methods and Results: Focus group discussions and interviews were performed as part of a larger qualitative study involving 10 low and middle-income countries in four continents regarding patient and caregiver engagement in childhood cancer treatment. We present the results of the Latin-American survivors and their experiences finishing treatment and life outside the pediatric oncology follow-up system.Themes regarding a) losing eligibility for pediatric surveillance and care, b) the importance of peer survivors, and c) the need for giving back were part of their stories.
Conclusion:We suggest that given the lack of organized support from healthcare systems and providers for survivors' proper transition into adult-centered care, foundations and non-governmental organizations can provide transitional support, offer space for guidance/information, and work towards collaboration among systems for future integrated programs.
Artículo de investigación científica resultado del proyecto de investigación "Sistemas de información en el marco de Justicia y Paz: ¿Medios para reparar la nación y escribir historia?" financiado por la convocatoria
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.