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

Laurel Williams, June G Eilers, Judith Heermann, Karen Smith

Research output: Contribution to journalArticle

7 Citations (Scopus)

Abstract

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.

Original languageEnglish (US)
Pages (from-to)393-402
Number of pages10
JournalProgress in Transplantation
Volume22
Issue number4
DOIs
StatePublished - Dec 1 2012

Fingerprint

Child Care
Parents
Transplants
Liver
Transplant Recipients
Mothers
Interviews
Patient Care Team
Qualitative Research
Intestines
Delivery of Health Care

ASJC Scopus subject areas

  • Transplantation

Cite this

The lived experience of parents and guardians providing care for child transplant recipients. / Williams, Laurel; Eilers, June G; Heermann, Judith; Smith, Karen.

In: Progress in Transplantation, Vol. 22, No. 4, 01.12.2012, p. 393-402.

Research output: Contribution to journalArticle

Williams, Laurel ; Eilers, June G ; Heermann, Judith ; Smith, Karen. / The lived experience of parents and guardians providing care for child transplant recipients. In: Progress in Transplantation. 2012 ; Vol. 22, No. 4. pp. 393-402.
@article{d1e34a5a2a1244e0b04cd7bd4c8d0bcd,
title = "The lived experience of parents and guardians providing care for child transplant recipients",
abstract = "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.",
author = "Laurel Williams and Eilers, {June G} and Judith Heermann and Karen Smith",
year = "2012",
month = "12",
day = "1",
doi = "10.7182/pit2012907",
language = "English (US)",
volume = "22",
pages = "393--402",
journal = "Progress in Transplantation",
issn = "1526-9248",
publisher = "InnoVision Communications",
number = "4",

}

TY - JOUR

T1 - The lived experience of parents and guardians providing care for child transplant recipients

AU - Williams, Laurel

AU - Eilers, June G

AU - Heermann, Judith

AU - Smith, Karen

PY - 2012/12/1

Y1 - 2012/12/1

N2 - 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.

AB - 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.

UR - http://www.scopus.com/inward/record.url?scp=84870411149&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84870411149&partnerID=8YFLogxK

U2 - 10.7182/pit2012907

DO - 10.7182/pit2012907

M3 - Article

C2 - 23187058

AN - SCOPUS:84870411149

VL - 22

SP - 393

EP - 402

JO - Progress in Transplantation

JF - Progress in Transplantation

SN - 1526-9248

IS - 4

ER -