Publication Date

2010

Document Type

Masters Thesis

Department

School for Social Work

Keywords

Bone marrow-Transplant-Patients, Hispanic American parents, Hispanic American teenagers-Family relationships, Communication and culture, Communication in medicine, Physician and patient, Language and culture barriers, Medical adherence, Bone marrow transplant, Patient compliance, Childrens Hospital of Los Angeles

Abstract

This study examined correlations and the impact between culture, language barriers, medical adherence, post transplant recovery and quality of life among monolingual Spanish or bilingual English and Spanish female and male pediatric Latino/Hispanic transplant recipients between the ages of 13 to 21 who have undergone either an autologous or allogeneic blood stem cell (bone marrow) transplant and their parent(s)/caretakers. By definition, bone marrow transplant is the treatment of hematopoietic stem cell from bone marrow, cord blood or peripheral blood. An allogeneic bone marrow transplant is the infusion of healthy blood stem cells from a related or unrelated person, called a donor who is identified by bone marrow registries as genetically human leukocyte antigen (HLA) compatible with the transplant recipient. Donors in this case may be family members such as the transplant recipient's (patient's) sibling(s) or the donor may be someone who is outside of the family system who is genetically compatible with the patient. An autologous bone marrow transplant is the infusion of the patients' own blood stem cells. The study design had two parts. Part I included the researcher's behavioral observations between the study participants and the participants health care providers, which included bone marrow transplant (BMT) doctors, nurses, social workers and medical interpreters. The behavioral observations were conducted at the BMT Outpatient Clinic located at Childrens Hospital Los Angeles (CHLA) Outpatient Tower. The BMT outpatient clinic visit interactions between the participants and transplant health care providers were observed, documented and audio taped during the participants routinely scheduled clinic visits. Although behavioral observations at CHLA's Walgreens pharmacy were included in the study design, the lack of participant pharmacy visits to this site led the researcher to remove Walgreens behavioral observations from the study. Therefore, the behavioral observations were completed at the BMT outpatient and not at CHLA Walgreen's Pharmacy. Part II of the study included Outpatient Focus Groups in which participants interacted with one another and the dialogue was guided by semistructured open-ended study questions developed by the researcher. Eleven voluntary participants enrolled in this study. The researcher observed one outpatient medical clinic visit with transplant recipients, their parent(s)/caretakers and the transplant health care providers and participants participated in two post transplant outpatient focus groups that were audio recorded. The findings from this study revealed that culture impacts medical adherence among Latino/Hispanic teenagers/young adults and their parent(s)/caretakers, and language, which is a cultural component unequivocally, impacts the process of medical adherence, post transplant recovery and long-term quality of life. Findings from this study suggest that effective communication patterns between health care providers, transplant recipients and their parent(s)/caretakers and the distribution of educational information improves post transplant recovery and long-term quality of life. The study's findings also showed that culturally competent health care providers who are knowledgeable and skilled in cultural differences increase communication patterns and strategies that aid in bridging communication gaps between health care providers and Latino/Hispanic transplant recipients. Medically trained interpreters were also found to aid bridge communications gaps between health care providers and Latino medical transplant recipients. Findings also showed that when the transplant recipient teens/young adults served as interpreters, significant errors in interpretation and understanding were noted.

Language

English

Comments

v, 157 p. : col. ill. Thesis (M.S.W.)-Smith College School for Social Work, Northampton, Mass., 2010. Includes bibliogrpahical references (p. 87-89)