TY - JOUR
T1 - Decision-Making for Destination Therapy Left Ventricular Assist Devices
T2 - Implications for Caregivers
AU - McIlvennan, Colleen K.
AU - Jones, Jacqueline
AU - Allen, Larry A.
AU - Lindenfeld, Joann
AU - Swetz, Keith M.
AU - Nowels, Carolynph
AU - Matlock, Daniel D.
N1 - Publisher Copyright:
© 2015 American Heart Association, Inc.
PY - 2015/3/21
Y1 - 2015/3/21
N2 - Implanting centers often require the identification of a dedicated caregiver before destination therapy left ventricular assist device (DT LVAD) implantation; however, the caregiver experience surrounding this difficult decision is relatively unexplored. Methods and Results-From October 2012 through July 2013, we conducted semistructured, in-depth interviews with caregivers of patients considering DT LVAD. Data were analyzed using a mixed inductive and deductive approach. We interviewed 17 caregivers: 10 caregivers of patients living with DT LVAD, 6 caregivers of patients who had died with DT LVAD, and 1 caregiver of a patient who had declined DT LVAD. The themes identified, which could also be considered dialectical tensions, are broadly interpreted under 3 domains mapping to decision context, process, and outcome: (1) the stark decision context, with tension between hope and reality; (2) the challenging decision process, with tension between wanting loved ones to live and wanting to respect loved ones' wishes; and (3) the downstream decision outcome, with tension between gratitude and burden. Conclusions-Decision-making surrounding DT LVAD should incorporate decision support for patients and caregivers. This should include a focus on caregiver burden and the predictable tensions that caregivers experience.
AB - Implanting centers often require the identification of a dedicated caregiver before destination therapy left ventricular assist device (DT LVAD) implantation; however, the caregiver experience surrounding this difficult decision is relatively unexplored. Methods and Results-From October 2012 through July 2013, we conducted semistructured, in-depth interviews with caregivers of patients considering DT LVAD. Data were analyzed using a mixed inductive and deductive approach. We interviewed 17 caregivers: 10 caregivers of patients living with DT LVAD, 6 caregivers of patients who had died with DT LVAD, and 1 caregiver of a patient who had declined DT LVAD. The themes identified, which could also be considered dialectical tensions, are broadly interpreted under 3 domains mapping to decision context, process, and outcome: (1) the stark decision context, with tension between hope and reality; (2) the challenging decision process, with tension between wanting loved ones to live and wanting to respect loved ones' wishes; and (3) the downstream decision outcome, with tension between gratitude and burden. Conclusions-Decision-making surrounding DT LVAD should incorporate decision support for patients and caregivers. This should include a focus on caregiver burden and the predictable tensions that caregivers experience.
KW - Heart failure
KW - patient-centered care
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UR - http://www.scopus.com/inward/citedby.url?scp=84929505996&partnerID=8YFLogxK
U2 - 10.1161/CIRCOUTCOMES.114.001276
DO - 10.1161/CIRCOUTCOMES.114.001276
M3 - Article
AN - SCOPUS:84929505996
SN - 1941-7713
VL - 8
SP - 172
EP - 178
JO - Circulation: Cardiovascular Quality and Outcomes
JF - Circulation: Cardiovascular Quality and Outcomes
IS - 2
ER -