title: The lived experience of parents and guardians providing care for child transplant recipients.
abstract: BACKGROUND
  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.
  
  
  METHODS
  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.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: University of Nebraska Medical Center, Omaha, NE, USA. williamsl@unmc.edu
authors.forename: Laurel
authors.initials: L
authors.lastname: Williams
authors.forename: June
authors.initials: J
authors.lastname: Eilers
authors.forename: Judith
authors.initials: J
authors.lastname: Heermann
authors.forename: Karen
authors.initials: K
authors.lastname: Smith
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D005260:Female; D006701:Home Nursing; D006801:Humans; D007223:Infant; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D016377:Organ Transplantation / Q000451:nursing*; D010290:Parents / Q000523:psychology*; D011368:Professional-Family Relations