Post-transplant Life: Web-posted Stories of Parents of Children with Kidney Transplants

Abstract

Numerous studies have focused on understanding the well-being and life experiences of parents of children with varying special healthcare needs. However, only a few studies analyze the needs and issues of parents of children with chronic kidney disease (CKD) or a kidney transplant. This study explores the unique life experiences of these parents and identifies important factors that help families enhance their quality of life. Unlike previous studies, this investigation discovers that the majority of parents reported positive post-kidney-transplant outcomes along with positive perceptions of their children’s special needs. This positive tone of web-posting stories is similar to previous research indicating that personal storytelling brings to light both resilience and therapeutic benefits. Thus, this study suggests that parental storytelling can be a useful psychosocial intervention that promotes the well-being of pediatric transplant recipients and their family members. Considering that more than half of parents in the study utilized the Internet to connect to other parents with similar experiences, professionals can encourage or incorporate forms of online interaction for parents to obtain information and support.