An Exploratory Study of the Characteristics of and Challenges for International Families Seeking Medical Care in the United States
Condition: Cancer; Allogeneic Peripheral Blood Stem Cell Transplant; Bone Marrow Transplantation
Study type: Observational

Summary: 
      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.
    

Detailed description: 
      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.
    

Time perspective: Prospective
Keywords: Pediatric; Children; Cancer; Bone Marrow Transplant