The experience of adults with sickle cell disease and their HLA-matched adult sibling donors after allogeneic hematopoietic stem cell transplantation.

作者: Agatha M. Gallo , Crystal L. Patil , Kathleen A. Knafl , Denise A. Angst , Damiano Rondelli

DOI: 10.1111/JAN.14152

关键词:

摘要: Aim To provide a rich description and in-depth understanding of the recipient-donor allogeneic hematopoietic stem cell transplantation experience. Background A transplant has high likelihood improving symptoms sickle disease in adults. While studies have reported experiences recipients donors with haematological malignancies, no published reports examined experience both adult their donors. Design Exploratory qualitative descriptive analysis. Methods We conducted individual interviews 13 (eight males, five females) representing dyads one triad from Midwest centre between August 2017-February 2018. Interviews were digitally audio-recorded, transcribed verbatim analysed using conventional content Findings Five themes identified: downward spiral second chance; getting monster off my back; difficult manageable; it was worth it; relating to healthcare team. Conclusions The results insights into complex nature perspectives Impact Health provider awareness can contribute family-centred care that supports health quality life for This promotes clinical improved communications by taking account knowledge, values informed preferences contributes decision-making care. Future research assess family support choice potential candidates.

参考文章(28)
Santosh L. Saraf, Annie L. Oh, Pritesh R. Patel, Yash Jalundhwala, Karen Sweiss, Matthew Koshy, Sally Campbell-Lee, Michel Gowhari, Johara Hassan, David Peace, John G. Quigley, Irum Khan, Robert E. Molokie, Lewis L. Hsu, Nadim Mahmud, Dennis J. Levinson, A. Simon Pickard, Joe G.N. Garcia, Victor R. Gordeuk, Damiano Rondelli, Nonmyeloablative Stem Cell Transplantation with Alemtuzumab/Low-Dose Irradiation to Cure and Improve the Quality of Life of Adults with Sickle Cell Disease Biology of Blood and Marrow Transplantation. ,vol. 22, pp. 441- 448 ,(2016) , 10.1016/J.BBMT.2015.08.036
Janice M. Morse, Critical Analysis of Strategies for Determining Rigor in Qualitative Inquiry Qualitative Health Research. ,vol. 25, pp. 1212- 1222 ,(2015) , 10.1177/1049732315588501
Meaghann S. Weaver, Douglas S. Diekema, Ashley Carr, Brandon Triplett, Matched Marrow, Sibling Shadow: The Epidemiology, Experience, and Ethics of Sibling Donors of Stem Cells. Journal of adolescent and young adult oncology. ,vol. 4, pp. 100- 104 ,(2015) , 10.1089/JAYAO.2014.0051
S Labott, A Pfammatter, The influence of the donor-recipient relationship on related donor reactions to stem cell donation. Bone Marrow Transplantation. ,vol. 49, pp. 831- 835 ,(2014) , 10.1038/BMT.2014.38
Mark C Walters, Karen Hardy, Sandie Edwards, Thomas Adamkiewicz, James Barkovich, Francoise Bernaudin, George R Buchanan, Nancy Bunin, Roswitha Dickerhoff, Roger Giller, Paul R Haut, John Horan, Lewis L Hsu, Naynesh Kamani, John E Levine, David Margolis, Kwaku Ohene-Frempong, Melinda Patience, Rupa Redding-Lallinger, Irene AG Roberts, Zora R Rogers, Jean E Sanders, J Paul Scott, Keith M Sullivan, Multicenter Study of Bone Marrow Transplantation for Sickle Cell Disease, Pulmonary, Gonadal, and Central Nervous System Status after Bone Marrow Transplantation for Sickle Cell Disease Biology of Blood and Marrow Transplantation. ,vol. 16, pp. 263- 272 ,(2010) , 10.1016/J.BBMT.2009.10.005
Annika Kisch, Ingrid Bolmsjö, Stig Lenhoff, Mariette Bengtsson, Being a haematopoietic stem cell donor for a sick sibling : Adult donors' experiences prior to donation European Journal of Oncology Nursing. ,vol. 19, pp. 529- 535 ,(2015) , 10.1016/J.EJON.2015.02.014
Junya Kanda, Richard D. Lopez, David A. Rizzieri, Alemtuzumab for the prevention and treatment of graft-versus-host disease International Journal of Hematology. ,vol. 93, pp. 586- 593 ,(2011) , 10.1007/S12185-011-0802-2
Matthew M. Hsieh, Courtney D. Fitzhugh, R. Patrick Weitzel, Mary E. Link, Wynona A. Coles, Xiongce Zhao, Griffin P. Rodgers, Jonathan D. Powell, John F. Tisdale, Nonmyeloablative HLA-Matched Sibling Allogeneic Hematopoietic Stem Cell Transplantation for Severe Sickle Cell Phenotype JAMA. ,vol. 312, pp. 48- 56 ,(2014) , 10.1001/JAMA.2014.7192