International Adaptation: Psychosocial and Parenting Experiences of Caregivers Who Travel to the United States to Obtain Acute Medical Care for Their Seriously Ill Child

Abstract

Despite the increasing trend of travel for medical purposes, little is known about the experience of parents and other caregivers who come to the United States specifically to obtain medical treatment for their seriously ill child. In this exploratory, descriptive qualitative study, we used a semi-structured narrative guide to conduct in-depth interviews with 22 Spanish or English-speaking caregivers about the challenges encountered and adaptation required when entering a new medical and cultural environment. Caregivers identified the language barrier and transnational parenting as challenges while reporting hospital staff and their own families as major sources of support. Using the results of the study as a guide, clinical and program implications are provided and recommendations for social work practice discussed.

Ethics of care in medical tourism: Informal caregivers' narratives of responsibility, vulnerability and mutuality

“…Industry reports and recent studies show that these individuals are often active participants in the practice of medical tourism, although the scope and scale of their care work has only been partially documented (see NaRanong and NaRanong, 2011;Yu and Ko, 2012;Yeoh et al, 2013;Margolis et al, 2013;Casey et al, 2013aCasey et al, , 2013b. These reports and studies document caregiver-companions taking on roles such as providing hands-on care, liaising with health workers, booking accommodations, coordinating travel, monitoring symptoms, and maintaining communication with friends and family at home.…”

Care management for foreign children, adolescents, young adults with cancer, and their families

“…The socioeconomic and familial impact of the care is often mentioned in the literature but remains poorly studied in pediatric oncology, as well as in other disciplines . In our study, most patients and families experienced major socioeconomic or familial consequences.…”

Psychosocial care for children receiving chimeric antigen receptor (CAR) T‐cell therapy

“…Psychosocial evaluation prior to arrival can serve to explore the family's health literacy, family‐specific concerns, and their understanding of the disease and expected treatment course 37 . This is particularly relevant for international patients.…”

“…There is little published guidance on the care of international patients. However, suggestions for improving care of international patients include preappointment orientation to the medical system, establishing collaborative expectations, understanding cultural norms and any associated specific needs, identifying ways that support and other resources may differ from the patient's home country, and early and deliberate transition of care back to the primary medical team 37‐40 . Identification of a primary contact within the home institution at the time of initial consultation and regular communication during the treatment course is necessary to facilitate transfer of care back to the primary team.…”

“… 43‐45 Thus, evaluation of risk for financial hardship should be considered for all patients undergoing CAR T‐cell therapy. Because most CAR T‐cell treatment is provided away from the family's usual social and financial supports, this evaluation should be completed prior to arrival in order for timely identification of financial stressors and housing needs 37 . Ongoing risk assessment is also important; the transition to outpatient or home care has been identified as a particularly high‐risk time for distress 46 .…”