Introduction: The Living Donor Navigator (LDN) program is one of several initiatives designed to help transplant candidates identify living donors with the help of a friend or family member advocate to speak on their behalf. More than half of advocates in the LDN program were the spouse or parent of the candidate and served in a caregiving role. Caregivers for patients awaiting transplantation have reported poorer quality of life than the general population, suggesting more support is needed for this vulnerable group. The purpose of this study was to understand whether the LDN program met the needs of advocates who were also caregivers for the transplant candidate.
Methods: We performed a supplementary secondary qualitative analysis of a parent study conducted December 2017-January 2018 with 9 advocates who participated in the LDN program. Transcripts were reanalyzed from focus group discussions, concentrating on comments about caregiving or made by caregivers. Using manual coding and reflexive thematic analysis, we identified broad codes and major themes.
Findings: Our re-analysis revealed one theme overlapping with our previous analysis (Support) and 2 new themes specific to caregiver advocates: Quality of Life and Fear. Caregivers agreed that the LDN program equipped them with tools to address these areas and best serve their simultaneous caregiver/advocate roles.
Discussion: These analyses demonstrated that those who served as advocate and caregiver derived a benefit from the LDN program but had distinct needs from other advocates. These findings can inform continued refinement of the program and expansion to support needs of caregiver.
Keywords: focus group discussion; qualitative analysis; thematic analysis.