Comparing Parents’ and Children's Views of Children's Quality of Life After Heart Transplant

Abstract

Purpose The purpose of this focused ethnographic study was to explore the quality of life (QOL) of school-age heart-transplant recipients. Design and Methods Semi-structured interviews were conducted with 11 parent-child dyads. Data were analyzed using content analysis and constant comparison. Results Participants identified key factors impacting the children’s QOL including: participation in normal activities, normalcy, staying healthy, sources of strength and support, and struggles (parents’ perspectives) and doing what kids do, being with family and friends, and being a heart transplant kid (children’s perspectives). Practice Implications Interventions focusing on the key factors identified by participants may impact the QOL of school-age heart-transplant recipients.

Transition from hospital to home following pediatric solid organ transplant: Qualitative findings of parent experience

“…Social isolation has been reported in a previous descriptive study of parents of pediatric transplant recipients . Specifically, parents of pediatric heart transplant recipients may place unnecessary restrictions on their transplanted children due to fear of infectious diseases . Parents receive education that their child is at risk for infections, although the “restrictions” theme underscores the importance of educating families regarding recommendations for daily living and activities.…”

Constantly responsible, constantly worried, constantly blessed: parenting after pediatric heart transplant

“…Data reported in this study were collected in a larger study7,8 that explored the quality of life of heart transplant recipients between 6 and 12 years of age. Parent-child dyads were recruited through the heart transplant clinic at a regional children's hospital in the mid-South.…”

“…Each interview began with a broad opening question, which was followed by probe questions and follow-up questions. Although the interview guide7 was designed to elicit descriptions of their children's quality of life, the broad opening question, “Tell me about your child's life since the heart transplant,” allowed parents to tell their child's story, which was intertwined with the parent's own story. Probe questions were used to allow parents to clarify or expand on information related to experiences.…”

Parents’ perspectives on caring for children after solid organ transplant

“…Parents are now working to re-introduce the transplanted child to daycare or school and address any developmental and/or learning delays. Parents described continued concern for infectious diseases, which is a primary concern when the child returns to daycare or school as reported by parents of heart transplant recipients (Green, McSweeney, Ainley, & Bryant, 2008).…”