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镰状细胞疾病患者和免疫白细胞匹配赠者接受异基因造血干细胞移植的经历。
Author(s) -
Gallo Agatha M.,
Patil Crystal L.,
Knafl Kathleen A.,
Angst Denise A.,
Rondelli Damiano,
Saraf Santosh L.
Publication year - 2019
Publication title -
journal of advanced nursing
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.948
H-Index - 155
eISSN - 1365-2648
pISSN - 0309-2402
DOI - 10.1111/jan.14152
Subject(s) - sibling , medicine , transplantation , disease , hematopoietic stem cell transplantation , quality of life (healthcare) , stem cell , health care , human leukocyte antigen , exploratory research , family medicine , psychology , immunology , developmental psychology , nursing , antigen , biology , economics , genetics , economic growth , sociology , anthropology
Aim To provide a rich description and in‐depth understanding of the recipient–donor allogeneic hematopoietic stem cell transplantation experience. Background A stem cell transplant has a high likelihood of improving symptoms of sickle cell disease in adults. While studies have reported the transplant experiences of recipients and donors with haematological malignancies, no published reports have examined the experience of both adult recipients with sickle cell disease and their donors. Design Exploratory qualitative descriptive analysis. Methods We conducted individual interviews with 13 recipients and donors (eight males, five females) representing five recipient–donor dyads and one recipient–donor triad from one Midwest transplant centre between August 2017–February 2018. Interviews were digitally audio‐recorded, transcribed verbatim and analysed using conventional content analysis. Findings Five themes were identified: the downward spiral and a second chance; getting the monster off my back; difficult and manageable; it was worth it; and relating to the healthcare team. Conclusions The results provide a description and insights into the complex nature of the stem cell transplant experience in sickle cell disease from the perspectives of both recipients and donors. Impact Health provider awareness of recipient–donor experiences can contribute to family‐centred care that supports the health and quality of life for both recipients and donors. This understanding promotes high quality clinical care and improved communications by taking into account the knowledge, values and informed preferences of recipients and donors and contributes to improved decision‐making and clinical care. Future research can assess family experiences that support informed choice for potential transplant candidates.