scholarly journals “Giving the gift of life twice”: Understanding the lived experiences of parent donors and nondonors in pediatric haploidentical hematopoietic cell transplantation

2021 ◽  
Author(s):  
Megan R. Schaefer ◽  
Vanessa Aguilera ◽  
Kendra Parris ◽  
Alanna Long ◽  
Brandon Triplett ◽  
...  
Keyword(s):  
Cell Transplantation ◽  
Lived Experiences ◽  
Hematopoietic Cell Transplantation ◽  
Hematopoietic Cell ◽  
The Gift ◽  
Haploidentical Hematopoietic Cell Transplantation

scholarly journals “Giving the gift of life twice”: Understanding the lived experiences of parent donors and non-donors in pediatric haploidentical hematopoietic cell transplantation

2021 ◽  
Author(s):  
Megan Schaefer ◽  
Vanessa Aguilera ◽  
Kendra Parris ◽  
Alanna Long ◽  
Brandon Triplett ◽  
...  
Keyword(s):  
Cell Transplantation ◽  
Hematopoietic Cell Transplantation ◽  
Psychological Impact ◽  
Hematopoietic Cell ◽  
Unrelated Donor ◽  
Donation Process ◽  
The Gift ◽  
Haploidentical Hematopoietic Cell Transplantation ◽  
Level Of Understanding ◽  
The Impact

Background: The use of parental donors in pediatric haploidentical hematopoietic cell transplantation is increasing, but research on the psychosocial impact of parental donation is currently limited. We conducted a retrospective, qualitative study to explore parental perceptions of the donation process and the impact of being a donor (or non-donor) on parents’ adjustment and coping with their child’s transplant experience. Methods: Parents/caregivers of children who underwent transplantation with a parental donor or a matched unrelated donor (N = 136) participated in interviews and completed an open-ended questionnaire. Both bereaved parents and parents of survivors were surveyed. Results: Six themes were identified in the data: level of understanding and satisfaction; perception of choice; preparation for donation; perceptions of donation and infusion; benefit-finding; and psychological impact of transplantation. Most parents were satisfied with the information they received and reported a good understanding of transplantation and donation procedures. Parents were divided on perspectives of choice, but their responses reflect that the necessity of saving their child’s life does not allow for choice. They described considerable effort to prepare for transplantation, physically, emotionally, and logistically. Parents acknowledged the psychological impact while identifying positive outcomes that resulted from their child’s transplant journey. Conclusions: Results highlight the unique experiences of parental donors and non-donors from the anticipation phase to the completion of their child’s transplant. Additionally, findings inform supportive care guidance by highlighting the need to assess parental donors’ emotional functioning, provide support post-donation, and conduct bereavement follow-up.

scholarly journals HLA-haploidentical vs matched-sibling hematopoietic cell transplantation: a systematic review and meta-analysis

2019 ◽  
Vol 3 (17) ◽  
pp. 2581-2585 ◽  
Author(s):  
Mohamad A. Meybodi ◽  
Wenhao Cao ◽  
Leo Luznik ◽  
Asad Bashey ◽  
Xu Zhang ◽  
...  
Keyword(s):  
Systematic Review ◽  
Cell Transplantation ◽  
Hematopoietic Cell Transplantation ◽  
Meta Analysis ◽  
Hematopoietic Cell ◽  
Free Survival ◽  
Relative Contribution ◽  
Haploidentical Hematopoietic Cell Transplantation ◽  
Matched Sibling ◽  
Outcome Differences

Abstract HLA haploidentical hematopoietic cell transplantation (haplo-HCT) using posttransplantation cyclophosphamide (PT-Cy) is an alternative strategy when a matched sibling donor (MSD) is not available. We performed a systematic review and meta-analysis to compare the outcomes of MSD vs haplo-HCT. Eleven studies (1410 haplo-HCT and 6396 MSD recipients) were meta-analyzed. All studies were retrospective and high quality, and 9 were multicenter. Haplo-HCT was associated with ~50% lower risk of chronic graft-versus-host disease (GVHD) (hazard ratio [HR], 0.55; 95% confidence interval [CI], 0.41-0.74), but higher risk of nonrelapse mortality (HR, 1.36; 95% CI, 1.12-1.66). Relapse, survival, acute GVHD, and GVHD-free relapse-free survival were not significantly different between the groups. Deciphering the relative contribution of PT-Cy and HLA disparity to the observed outcome differences between the groups requires further research.

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