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

Background:

The number of individuals who choose to travel out of their native country for medical treatment in the United States has been growing (Purnell & Paulanka, 1998). State-of-the art care for children with cancer or rare diseases is not available in all countries, especially those where the ubiquity of cancer is a new phenomenon (Granda-Cameron, 1999). Due to the proximity of Latin America and the growing numbers of Latinos already in the United States, many, though not all, of the international patients being treated in U.S. hospitals are from Spanish-speaking countries (Coatsworth, Duncan, Pantin, & Szapocznik, 2006). While there are benefits associated with obtaining care in the United States such as improved access to specialized medical services, barriers posed by linguistic and cultural differences may play a role in the provision of adequate care for these children and their families. Additional challenges associated with receiving care in another country include failure to adhere to medical regimen due to breakdowns in communication, increased stress upon the caregiver to navigate a foreign health system and adjust to a foreign culture, and being uprooted from supportive social networks and family members (Flores, Abreu, Schwartz, & Hill, 2000). Parents of children with more severe and/or complex diseases may find themselves settling in the United States at the cost of leaving behind loved ones and careers in their country of origin. Provision of optimal care for these patients includes addressing the adjustment needs of their families; the caregiver-patient relationship has a significant influence on the child s physical and psychological outcomes (Brown et al., 2008). Exploring the experiences and needs of internationalfamilies that come to the United States seeking medical care for their child may help health care centers to provide more appropriate resources and may improve the overall quality of culturally-sensitive care provided to these families.

Objective: This is a pilot, exploratory study designed to obtain greater understanding about the unique experiences of international families, mostly Latino families, who choose to participate in clinical research or seek medical treatment in the United States. Due to the lack of research on this phenomenon, the study will utilize qualitative methods to extrapolate the main themes that characterize this experience. The end goal of the study is to identify unique risk and protective factors that link directly to feasible interventions, so that we can provide this growing population with the standard of care expected by the mission of the NIH.

Aims:

To identify factors affecting the decision by international caregivers to seek treatment in the United States, with a specific focus on how medical information is obtained and utilized in the decision-making process.