An Exploratory Study of the Characteristics of and Challenges for International Families Seeking Medical Care in the United States

Background: \- State-of-the art care for children with cancer or rare diseases is not available in all countries. Owing to the proximity of Latin America and the growing numbers of Latinos already in the United States, many international patients receiving specialized medical care in U.S. hospitals are from Spanish-speaking countries. Although there are benefits associated with obtaining specialized care in the United States, linguistic barriers and cultural differences as well as the general stresses of caring for a child with a serious illness may affect families ability to obtain adequate care for their children. Researchers are interested in exploring the experiences and needs of international Latino families receiving medical care for their child in the United States in order to help health care centers provide more appropriate resources and improve the overall quality of culturally sensitive care. Objectives: \- To understand the experiences of international Latino families who are receiving treatment for their child or have enrolled their child in a research study in the United States. Eligibility: * Caregivers of a child between birth and 25 years of ages who are from Latin America (which includes Mexico, all countries in Central America and South America, and Spanish-speaking Caribbean countries) and who have traveled to the United States to enroll their child in a research protocol and/or seek treatment for their child s medical condition. * Caregivers must have a child enrolled on a research protocol at the time of this study. * Caregivers must have been away from their country of origin for a minimum of 3 months. Design: * This study requires a single interview that should take approximately 1 hour. * Participants will complete the interview with a member of the research team who is bilingual or fluent in Spanish. * Participants will be asked open-ended questions about why they chose to come to the United States, how they are adjusting to living and getting medical care for their child in the United States, and what hopes they have for treatment outcomes and future medical care. * Researchers will record the interviews to be reviewed later. The recordings will be used for this study only.

Sex

All

Minimum age

18 Years

Maximum age

100 Years

* INCLUSION CRITERIA:
* Caregivers of children aged 0-25.
* The children of the participants must be involved in clinical research or be receiving treatment for their child s medical condition. This includes but is not limited to oncological and hematological diseases, conditions requiring transplant, and rare immunodeficiency or genetic conditions.
* The family traveled to the US for the purpose of addressing their child s medical condition.
* Caregivers must be from a country outside of the United States. Care givers must be fluent in Spanish or English.
* Caregiver has been away from the country of origin for a minimum of three months.
* The child s treatment protocol PI must agree to have the research team contact potential participants in order to explore their interest in this protocol.

EXCLUSION CRITERIA:

* The caregiver participant immigrated to the US for reasons other than enrolling in a research study or addressing their child s medical condition.
* Presence of psychotic symptoms or severe psychological distress, which in the judgment of the Principal or Associate Investigator or consulting psychiatrist would compromise the caregiver s ability to engage in the interview or is likely to interfere with the study procedures or results.

• BACKGROUNDAbbe M, Simon C, Angiolillo A, Ruccione K, Kodish ED. A survey of language barriers from the perspective of pediatric oncologists, interpreters, and parents. Pediatr Blood Cancer. 2006 Nov;47(6):819-24. doi: 10.1002/pbc.20841. PMID 16615062
• BACKGROUNDAlegria M, Canino G, Rios R, Vera M, Calderon J, Rusch D, Ortega AN. Inequalities in use of specialty mental health services among Latinos, African Americans, and non-Latino whites. Psychiatr Serv. 2002 Dec;53(12):1547-55. doi: 10.1176/appi.ps.53.12.1547. PMID 12461214
• BACKGROUNDBarakat LP, Kazak AE, Meadows AT, Casey R, Meeske K, Stuber ML. Families surviving childhood cancer: a comparison of posttraumatic stress symptoms with families of healthy children. J Pediatr Psychol. 1997 Dec;22(6):843-59. doi: 10.1093/jpepsy/22.6.843. PMID 9494321