Through the Eyes of Young Sibling Donors: The Hematopoietic Stem Cell Donation Experience

D’Auria, Jennifer P.; Fitzgerald, Tania; Presler, Cammie Moore; Kasow, Kimberly A.

doi:10.1016/j.pedn.2014.12.012

Cited by 14 publications

(35 citation statements)

References 14 publications

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“…Having a child with a severe chronic illness is a traumatic experience enough, but BMT may solely trigger PTSD symptoms in parents, as they have to provide emotional and physical care for the ill child during a long and stressful period, have to make complicated decisions about the treatment together with the multidisciplinary team and at the same time have to deal with their own emotions, especially with the realistic fear of losing their child . Some parents are also faced with supporting one of their other children who will be acting as a sibling donor . In a study evaluating psychopathology in the parents of the children waiting for BMT, 54% PTSS was reported in parents, independent from the child's primary diagnosis (cancer or not).…”

Section: Discussionmentioning

confidence: 99%

“…Although it can be lifesaving, the BMT process affects every family member, as it challenges the physical and psychological reserves of the family unit . In previous studies pre‐ and postprocedural BMTs were mostly found to be related to significant increases in anxiety, depression, parental distress, and PTSD in parents .…”

Section: Introductionmentioning

confidence: 99%

“…In previous studies pre‐ and postprocedural BMTs were mostly found to be related to significant increases in anxiety, depression, parental distress, and PTSD in parents . In addition, the psychological impact of BMT on parents is intensified because frequently two family members, the ill child and the donor sibling, need to face up to the intrusive medical procedures …”

Section: Introductionmentioning

confidence: 99%

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Post‐traumatic stress disorder and health‐related quality of life in the siblings of the pediatric bone marrow transplantation survivors and post‐traumatic stress disorder in their mothers

Çoban

Adanır

Özatalay

2017

Pediatric Transplantation

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Although BMT is lifesaving in many childhood diseases, it was found to be related to anxiety, depression, and PTSD in parents, and PTSD, anxiety and overall low self-esteem in siblings. Research on siblings' HRQoL is limited. The aim of this study was to investigate PTSD and HRQoL in siblings (donor and non-donor) of pediatric BMT survivors and PTSD in their mothers, compared to the healthy controls. Thirty-five siblings and their mothers and 35 healthy peers and their mothers were recruited as the study group and as the comparison group, respectively. In children, Child PTSD-Reaction Index for PTSD and PedsQL for HRQoL were used. PTSD Checklist-Civilian Version was used for PTSD in mothers. The study group, both children and mothers, obtained significantly higher PTSD rates than the control group. Children in the study group also reported significantly poorer HRQoL than the control group in all scales. As a novel finding, there was a significant negative correlation between siblings' and mothers' PTSD scores and siblings' PedsQL scores, indicating that PTSD symptoms in siblings and mothers significantly led to impairment in siblings' HRQoL or vice versa. Thus, the identification and treatment of siblings and mothers with PTSD seems imperative.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Post‐traumatic stress disorder and health‐related quality of life in the siblings of the pediatric bone marrow transplantation survivors and post‐traumatic stress disorder in their mothers

Çoban

Adanır

Özatalay

2017

Pediatric Transplantation

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“…The donation was forced because of the situation (Hutt et al, 2015(Hutt et al, : 1339. Some sibling donors indicated that they wanted to have the autonomy to make the final decision (D'Auria et al, 2015;Hoag et al, 2018;MacLeod et al, 2003;Packman et al, 1997a;Pentz et al, 2014), although many felt overwhelming pressure and responsibility to save their brother's or sister's life through their HSCT donation (D'Auria et al, 2015;MacLeod et al, 2003). One sibling described this pressure:…”

Section: The Overwhelming Pressure To Donatementioning

confidence: 99%

Growth in the face of overwhelming pressure: A narrative review of sibling donor experiences in pediatric hematopoietic stem cell transplant

Klippenstein

Piotrowski

Winkler

et al. 2021

J Child Health Care

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Sibling donation in pediatric hematopoietic stem cell transplant (HSCT) can be emotionally distressing for children, but may simultaneously evoke positive emotions, and has the potential to facilitate personal growth. We conducted a narrative review of sibling donor experiences, which included an analysis of psychosocial distress and post-traumatic growth (PTG). We searched the following databases: MEDLINE, CINAHL, PsycInfo, and SCOPUS. Search concepts used to develop key terms included HSCT, siblings, children, and psychosocial outcomes. Specific inclusion criteria included a) research articles published in English in peer-reviewed journals until September 2020, and b) reported trauma symptoms and PTG characteristics of sibling donation experiences. Four themes were identified: fear and anxiety related to HLA testing, overwhelming pressure to donate, guilt and blame when the ill child died, as well as emotional and physical isolation following donation. Sibling responses also included evidence of PTG, articulated as a deepened appreciation for life, closer relationships with the ill child and other family members, increased personal strength, and spiritual growth. These results highlight a critical need for future research approaches that further empower sibling donor voices, such as those found in participatory, arts-based methodologies.

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“…Healthy non-donor siblings have been shown to feel isolated and at increased risk of PTSD, anxiety and depression [54,55] while the psychological outcome for donor siblings is linked to the success of the SCT. Successful transplants see donor siblings have higher levels of self-esteem, mastery, happiness, and life satisfaction, but in the event of an unsuccessful transplant and death of a sibling, donors can experience self-blame, guilt, and thoughts of personal failure [82][83][84]. This emphasis on results of the SCT is risky for the sibling donor especially as SCT can have an unpredictable mortality and morbidity risk.…”

Section: Sibling Supportmentioning

confidence: 99%

Audit of Psychosocial and Palliative Care Support for Children Having Allogeneic Stem Cell Transplants at the New Zealand National Allogeneic Transplant Centre

et al. 2021

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Psychosocial and palliative care support during stem cell transplants (SCT) is known to improve outcomes. Aim: evaluate the support provided to children and families at the New Zealand National Allogeneic Stem Cell Transplant unit (NATC). Method: the psychosocial and palliative care support for children who received SCT between December 2012 and April 2018 was audited. Results: of the 101 children who received SCT, 97% were reviewed by the social work team (SW) and 82% by the psychiatric consult liaison team (CLT) at least once during their illness. However, pre-transplant psychological assessment only occurred in 16%, and during the SCT admission, only 55% received SW support, and 67% received CLT support. Eight out of eighty-five families (9%) were offered support for siblings. Eight of the sixteen children who died were referred for pediatric palliative care (PPC) with all supported and half the families who experienced a death (n = 8; 50%) received bereavement follow up. Conclusion: although the majority received some social work and psychological support, auditing against the standards suggests the consistency of involvement could be improved. Referrals for PPC were inadequate and largely for end-of-life phase. Sibling support, in particular donor siblings, had insufficient psychological assessment and support. Key recommendations are provided to address this underperformance.

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Through the Eyes of Young Sibling Donors: The Hematopoietic Stem Cell Donation Experience

Cited by 14 publications

References 14 publications

Post‐traumatic stress disorder and health‐related quality of life in the siblings of the pediatric bone marrow transplantation survivors and post‐traumatic stress disorder in their mothers

Post‐traumatic stress disorder and health‐related quality of life in the siblings of the pediatric bone marrow transplantation survivors and post‐traumatic stress disorder in their mothers

Growth in the face of overwhelming pressure: A narrative review of sibling donor experiences in pediatric hematopoietic stem cell transplant

Audit of Psychosocial and Palliative Care Support for Children Having Allogeneic Stem Cell Transplants at the New Zealand National Allogeneic Transplant Centre

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