The Experience of Primary Caregivers of Undocumented Immigrants with End-Stage Kidney Disease that Rely on Emergency-Only Hemodialysis

Abstract

Background: Undocumented immigrants with end-stage kidney disease (ESKD) who rely on emergency-only hemodialysis (dialysis only after an emergency department evaluation) face psychosocial distress. Emergency-only hemodialysis (EOHD) is likely burdensome for primary caregivers as well. Objective: To understand the experience of primary caregivers of undocumented immigrants with ESKD who rely on emergency-only hemodialysis. Design, Setting, and Participants: A qualitative, semi-structured interview study to assess the experiences of primary caregivers of undocumented immigrants with ESKD at a safety-net hospital in Denver, Colorado from June 28 to November 15, 2018. Applied thematic analysis was used to analyze interviews. Main Outcomes and Measures: Themes and subthemes. Results: Twenty primary caregiver participants had a mean (SD) age of 46 (17), 13 (65%) were female, 7 (35%) were in an adult child caregiver role, and 13 (65%) were spouses. Five themes and 17 subthemes (in parentheses) were identified: (1) Caregiver role (providing emotional, physical, and economic support, advocacy and care navigation), (2) Caregiver burden (anxiety related to patient and personal death, emotional exhaustion and personal illness, struggle with finances, self-care and redefining relationship), (3) Unpredictable EOHD (acute episodes of illness that trigger emergency, stress when patient is denied dialysis, impact on work and sleep, and emotional relief after a session of EOHD), (4) Effect on children (dropping out or missing school, psychosocial distress, children assuming caregiver responsibilities, and juggling multi-generational caregiving of children), (5) Faith and appreciation (comfort in God and appreciation of healthcare). Conclusions and Relevance: Caregivers of undocumented immigrants with ESKD who rely upon EOHD experience caregiver burden and distress. The impact of EOHD on caregivers should be considered when assessing the consequences of excluding undocumented immigrants from public insurance programs.