Trial Information

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.

To explore the experience of international caregivers in adapting to the medical and social
culture of the United States.

To explore the thoughts and concerns of international caregivers regarding termination of
treatment and subsequent re-entry into their native country.

To identify the presence and kind of positive growth experiences that occur in international
families seeking medical care in the United States

To develop a set of concrete risk and protective factors associated with this experience in
order to link to feasible interventions.

(The term caregiver in this protocol is used to encapsulate any individual, such as a
parent, close relative, foster parent, or head of household, who attends to the needs of the
ill child.)

Study Population:

This is a study taking place at the National Institutes of Health (NIH). All caregivers of
a child between the ages of 0-25 from a foreign country who have traveled to the United
States for the purpose of enrolling in a research protocol and/or seeking treatment for
their child's medical condition will be invited to participate in this study. Caregivers
who immigrated to the United States for reasons other than obtaining these services for
their child's condition will not be eligible to enroll in this study. Given the present
demographic populations at NIH, it is expected that participants will include, but not be
limited to, individuals from the Caribbean, Dominican Republic, Puerto Rico, Chile, Peru,
Guatemala, and Mexico. This sampling frame ensures that the presence of black, white, and
mixed race individuals will be represented, acknowledging ethnicities that are often
overlooked in studies focusing specifically on the experience of a given ethnic or racial
group.

Socioeconomic situation of the families is expected to vary widely; at NIH, individuals who
meet the criteria for this study are from all different socioeconomic strata and have
varying levels of education.

Design:

This is a qualitative study that will utilize narrative interview techniques to gather data,
and content analysis techniques to analyze data. Data will be gathered according to
theories of saturation of content, while collecting sufficient data to ensure credibility
and face validity (Mays & Pope, 2000). NVivo, a validated quantitative research tool will
be used for data analysis.