The Pediatric Sibling Donor Experience in Hematopoietic Stem Cell Transplant: An Integrative Review of the Literature

Bauk, Kathryn; D’Auria, Jennifer P.; Andrews, Amber; Presler, Cammie Moore

doi:10.1016/j.pedn.2012.09.004

Cited by 18 publications

(16 citation statements)

References 12 publications

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“…14 There is also some evidence that although the procedure does not yield any health benefits for the savior sibling, it yields emotional and psychosocial benefits. 15 One benefit lies in the improvement of the health and well-being of a dear family member, and the knowledge to have contributed to this improved quality of life of a person to whom one is emotionally attached. But in this particular case, there is also the transfusion risk due to girl's low weight that the therapeutic team has to consider.…”

Section: Discussionmentioning

confidence: 99%

Saving whom? The ethical challenges of harvesting tissue from savior siblings

Rubeis

Steger²

2019

European J of Haematology

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Purpose of the study To discuss the ethical challenges for the therapeutic team when dealing with a young savior sibling as a potential tissue donor. Basic procedures Savior siblings are children that are created to serve a sibling as a donor of umbilical cord blood, bone marrow, or peripheral blood from which hematopoietic stem cells are derived. These cells are used for hematopoietic stem cell therapy, which is the only curative treatment for certain hemoglobinopathies. We used a case including a 19‐year‐old thalassemia patient and his two and a half year old sister from our practice as ethics consultants. Our methodological basis is the principlism approach by Beauchamp and Childress, consisting of four principles: autonomy, non‐maleficence, beneficence, and justice. Main findings We found that the main conflict arises between the autonomy of the savior sibling as well as the non‐maleficence regarding her and the beneficence of the thalassemia patient. Principal conclusions Decision‐making is complex when decisions within the family are concerned, especially when non‐competent young children are involved. The therapeutic team does not only have to recognize the principal vulnerability of children but also the different scales of vulnerability depending on their age.

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Section: Discussionmentioning

confidence: 99%

Saving whom? The ethical challenges of harvesting tissue from savior siblings

Rubeis

Steger²

2019

European J of Haematology

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“…18 Studies on the psychosocial and emotional effects of the transplant revealed differences between donor and nondonor siblings. 17,19,20 Donors experienced behavioral problems and anxiety, whereas nondonors had ambivalent feelings of both disappointment and relief of not being a donor. 17,19 Our study focuses on the effects of the donation on the family dynamics and the meaning of the donation process from the sibling donors' and their parents' perspective.…”

Section: Introductionmentioning

confidence: 99%

Hematopoietic stem cell donation: psychological perspectives of pediatric sibling donors and their parents

Hutt

Nehari

Munitz-Shenkar

et al. 2015

Bone Marrow Transplant

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Allogeneic stem cell transplantation (SCT) is widely used for treatment of various life-threatening pediatric diseases. It is an intensive process that psychologically affects the whole family. Pediatric donors represent a very unique, underreported, group. The aim of this study is to investigate the sibling donors' and their parents' perspective on the donation process. The cohort included 36 sibling donors and 50 parents of pediatric patients who underwent allogeneic SCT between 1995 and 2010 and were alive at the time of the study. Mean age at donation was 14.78±8.350 years in donors' group and 8.22±4.639 years in parents' group. Data were collected by anonymous questionnaires. Three psychological dimensions were analyzed: donors' personal perspective; donor-recipient interpersonal relationship and the influence of the donation on the family unit. Results showed that the donors experienced a wide range of complex emotional responses, positive and negative, whereas the parents' responses were mainly positive and less complex. This study presents both the sibling donor's and parents' perspective, giving a more complete picture of the donation process within the family. The effects of this intense experience of SCT has a long-term impact on the whole family, indicating the need for follow-up and psychosocial support.

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“…3 Although the use of minors as HSC donors is considered medically safe 4 and legally accepted given that no alternative approach of comparable effectiveness exists, policy statements by the American Academy of Pediatrics 5 and published reviews of the literature cite a lack of understanding of the physical and psychosocial effects of pediatric HSC donation and call for investigations of such effects. 6-8 …”

mentioning

confidence: 99%

“…6,7 Authors of these reviews and other published investigations conclude that there is a critical need to better understand the donation-related experiences of this group. 8-11 The few published findings suggest that pediatric donors may experience psychosocial issues around the time of and following donation including higher anxiety and lower self-esteem than nondonors, 12 moderate levels of posttraumatic stress, depression, behavioral problems, identity problems, guilt, and resentment.…”

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confidence: 99%

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Health-Related Quality of Life among Pediatric Hematopoietic Stem Cell Donors

Switzer

Bruce

Kiefer

et al. 2016

The Journal of Pediatrics

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Objectives To examine health-related quality of life (HRQoL) among sibling pediatric hematopoietic stem cell donors from predonation through 1 year postdonation, to compare donor-reported HRQoL scores with proxy-reports by parents/guardians and those of healthy norms, and to identify predonation factors (including donor age) potentially associated with postdonation HRQoL, to better understand the physical and psychosocial effects of pediatric hematopoietic stem cell donation. Study design A random sample of 105 pediatric donors from US centers and a parent/guardian were interviewed by telephone predonation and 4 weeks and 1 year postdonation. The interview included sociodemo-graphic, psychosocial, and HRQoL items. A sample of healthy controls matched to donors by age, gender, and race/ethnicity was generated. Results Key findings included (1) approximately 20% of donors at each time point had very poor HRQoL; (2) child self-reported HRQoL was significantly lower than parent proxy-reported HRQoL at all 3 time points and significantly lower than that of norms at predonation and 4 weeks postdonation; and (3) younger children were at particular risk of poor HRQoL. Conclusions Additional research to identify the specific sources of poorer HRQoL among at-risk donors (eg, the donation experience vs having a chronically ill sibling) and the reasons that parents may be overestimating HRQoL in their donor children is critical and should lead to interventions and policy changes that ensure positive experiences for these minor donors.

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The Pediatric Sibling Donor Experience in Hematopoietic Stem Cell Transplant: An Integrative Review of the Literature

Cited by 18 publications

References 12 publications

Saving whom? The ethical challenges of harvesting tissue from savior siblings

Saving whom? The ethical challenges of harvesting tissue from savior siblings

Hematopoietic stem cell donation: psychological perspectives of pediatric sibling donors and their parents

Health-Related Quality of Life among Pediatric Hematopoietic Stem Cell Donors

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