The lived experience of parents and guardians providing care for child transplant recipients.

CONTEXT: Little has been published about the caregiving experiences of the parents or guardians of children receiving liver or liver/intestinal transplants.
OBJECTIVE: To describe the lived experiences of parents and guardians as they prepared for and provided postdischarge care to a child who received an isolated intestine or a liver/intestinal transplant and to assess the impact of transplants on parents' stress levels.
DESIGN: Semistructured, audio-taped phone interviews of parents' and guardians' perceptions of their experiences preparing to and providing care to a child transplant recipient were transcribed verbatim and analyzed by the research team using established qualitative research methods. PARTICIPANTS: Five parents or guardians (3 mothers, 1 foster mother, and 1 grandfather) of children who received a transplant between 2000 and 2008 at age 11 months to 6.7 years.
RESULTS: Responses to the interviews gravitated toward 3 focal points: the parents' and guardians' perceptions of their interactions with the transplant team, their interactions with the local health care systems, and caring for themselves and their child at home.
CONCLUSION: In preparing parents and guardians to care for their children after discharge from the hospital, transplant teams need to be aware of differences between what we think we communicate and how it is interpreted by the parents and guardians, the relationships built between parents and guardians and health care teams, parents' attitudes and levels of stress, and the impact these factors have on care and the parents' and guardians' experience.