Identifying and addressing barriers to African American and non—African American families' discussions about preemptive living related kidney transplantation

Abstract

CONTEXT: Ethnic/racial minority and nonminority families' perceived barriers to discussing preemptive living related kidney transplantation (LRKT) and their views on the potential value of health care professionals trained to address barriers are unknown. OBJECTIVE, SETTING, AND PARTICIPANTS: To collect pilot data for evaluating perceived barriers to preemptive LRKT and to inform the development of a culturally sensitive intervention to improve families' consideration of LRKT. In 4 structured group interviews of African American and non-African American patients (2 groups) with progressing chronic kidney disease and their family members (2 groups), participants' perceived barriers to initiating LRKT discussions and their views regarding the value of social workers to support discussions were explored. RESULTS: Patients' barriers included concerns about their (1) ability to initiate discussions, (2) discussions being misinterpreted as donation requests, (3) potential burdening of family members, (4) uncertainty about when to initiate discussions, and (5) inducing guilt or coercing family members. Family members' barriers included (1) feeling overwhelmed by patients' illness, (2) patients' denial about their illness, (3) caregiver stress, and (4) uncertainty about their own health or the health of other family members who might donate or need a kidney in the future. Participants reported that social workers could facilitate difficult or awkward discussions and help families understand the LRKT process, address financial concerns, and cope emotionally. Themes were similar between African Americans and non-African Americans. CONCLUSIONS: Families identified several barriers to discussing preemptive LRKT that could be addressed by social workers. Further research must be done to determine whether social workers need to tailor interventions to address families' cultural differences.