Introduction: Living donor kidney transplantation (LDKT) is the recommended treatment for patients with end-stage kidney disease (ESKD), with superior allograft and recipient survival compared to deceased donor kidney transplantation (DDKT). In a pediatric setting, caregivers influence decision-making about LDKT versus DDKT treatment, but inequities in access to LDKT across ethnocultural groups makes treatment navigation difficult. For example, Chinese Canadians have an increased risk of ESKD, yet reduced access to LDKT compared to white patients, despite being the largest visible minority population in Canada. The aim of this qualitative study was to illuminate the perceptions and knowledge of LDKT among caregivers of Chinese Canadian pediatric patients with chronic kidney disease (CKD), specifically highlighting ethnocultural barriers and facilitators affecting access.
Methods: A qualitative description study design was used. Participants were recruited from the nephrology program at a leading Canadian pediatric medical institution. All caregivers of Chinese Canadian patients with CKD were eligible if they were 18 years of age or older and spoke English, Cantonese or Mandarin. One-on-one, semi-structured interviews were conducted virtually, in English, by a member of the research team and one interview included the support of a Cantonese interpreter. Interviews were audio-recorded and transcribed verbatim. Thematic analysis was used to explore participants’ experience.
Results: Seven interviews were conducted with six mothers and one father of six Chinese Canadian pediatric patients with CKD: four patients had undergone a kidney transplant (n=3 DDKT; n=1 LDKT), and two were not yet listed for transplant. Analysis of data highlighted how the interplay of stigma and burden, as experienced by participants, increased decision-making complexity relative to pursuing LDKT or DDKT. The experience of stigma was expressed within the cultural conception of illness as negative, leaving parents often feeling isolated in their ability to talk about pediatric CKD with others and hesitant to discuss living donation with family or friends. The experience of burden heightened this impact since sharing aspects of their child’s illness could instill an emotional burden on others, and being a donor was perceived as having further burdens for the donor and their family (e.g., physical and financial).
Conclusion: Increased awareness about LDKT is needed in the Chinese Canadian community to empower and better support caregivers of children with CKD. Providing opportunities for members of the Chinese Canadian community to act as advocates for LDKT may encourage culturally-reflexive discussions among families facing transplant-related decision-making. Offering a parent-to-parent peer mentorship intervention could decrease feelings of isolation for caregivers in this population.