Psychological effects of hematopoietic SCT on pediatric patients, siblings and parents: a review

Packman, Wendy; Weber, Susan C.; Wallace, Jo; Bugescu, Nicolle

doi:10.1038/bmt.2010.74

Cited by 146 publications

(203 citation statements)

References 60 publications

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“…3 Little is known regarding psychological distress for parents, particularly for fathers, whose children undergo SCT. [4][5][6][7] A small cross-sectional study suggested that mothers of children who undergo SCT experience greater distress than fathers. 6 Retrospective studies suggest that parental distress is highest before the transplant.…”

Section: Introductionmentioning

confidence: 99%

Differences in mothers’ and fathers’ psychological distress after pediatric SCT: a longitudinal study

Barrera

Atenafu

Doyle

et al. 2011

Bone Marrow Transplant

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The purpose of this study was to examine longitudinally psychological distress and its correlates in mothers and fathers of children who undergo SCT, up to 2 years post SCT. A total of 111 parents of patients diagnosed mainly with leukemia completed standardized measures of depression and anxiety symptoms as indicators of psychological distress, 85 at 1 year pre-SCT and 81 at 2 years post SCT. Parents' age and gender, child's age, diagnosis, radiation history, behavior and physical health were examined as potential related factors. Linear mixed models for repeated measures with appropriate covariance structure were used in the analysis. Depression and anxiety scores significantly decreased by 2 years for mothers and fathers. Mothers reported significantly more depression symptoms than did fathers, but reported comparable symptoms of anxiety. Pre-SCT depression and anxiety scores, mother's age (younger), child's behavior problems, radiation history and diagnosis of neuroblastoma predicted maternal distress 2 years post SCT; pre-SCT depression and anxiety scores, father's age (older) and child's diagnosis predicted father's distress. This study highlights differences and similarities in mothers' and fathers' psychological distress and identifies related risk factors. The results can guide interventions for mothers and fathers whose children undergo SCT based on their pre-SCT psychosocial risk.

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Section: Introductionmentioning

confidence: 99%

Differences in mothers’ and fathers’ psychological distress after pediatric SCT: a longitudinal study

Barrera

Atenafu

Doyle

et al. 2011

Bone Marrow Transplant

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“…Risks of a standard donation may include risk of anesthesia, vascular access line placement, filgrastim administration and apheresis, 2,3 as well as psychological risks, such as donor guilt, if recipient outcomes are poor. 8,9 However, FDA and DHHS regulations direct IRBs to consider as research risks only those risks that 'result from the research, as distinguished from risks of therapies subjects would receive even if not participating in the research.' 10 Accordingly, when standard HSC collection procedures are performed, and the donor would have donated in the clinical setting (for a standard indication), the risks of a standard donation should not count as research risks.…”

Section: Use Of Minor Donors On Research Protocolsmentioning

confidence: 99%

“…8,9,13 Incorporation of psychosocial risks in the risk assessment of minor donors is an area that is often not fully integrated, but needs to be incorporated-and specifically focusing on the risks in the research setting. However, in some cases it is possible that the psychosocial risk to the donor will be identical to those in the clinical setting; in other cases it is possible that donors could experience greater psychosocial risk, especially if benefit to the recipient is less certain.…”

Section: Areas Of Ongoing Researchmentioning

confidence: 99%

Children as hematopoietic cell donors in research: when is it approvable?

Shah

Wayne

Grady

et al. 2014

Bone Marrow Transplant

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With increasing frequency, allogeneic hematopoietic cell transplantation involving children is being performed in the research setting. Allogeneic hematopoietic cell transplantation, however, cannot be performed without a hematopoietic stem cell (HSC) donor. This donor is often a sibling of the recipient and may also be a child. In such circumstances, it is unclear whether or how the federal regulations for pediatric research apply to the minor donors. This introductory paper reviews the issues to be considered while evaluating studies that use HSCs obtained from minor donors and identifies areas where further research is needed. In the era of increasing applicability for donor-derived cellular therapies, we provide a suggested framework for determining when minor donors qualify as human research subjects and when their participation can be approved under the federal regulations.

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“…[1] However parents of children undergoing BMT often experience a great deal of stress and are at risk for short and long-term psychosocial sequelae, such as depression, anxiety and decrease quality of life. [2][3][4][5] Enhancing our understanding of the parent, family, and BMT characteristics that are associated with increased parental impact may help clinicians identify parents most at risk, and lead to the development of interventions to support parents through the BMT trajectory. In one study of 49 parents/guardians of BMT recipients, 81% of parents/guardians reported they felt proceeding to BMT was their only choice, given its life-saving potential.…”

Section: Introductionmentioning

confidence: 99%

Uncertainty in pediatric bone marrow transplantation: A qualitative analysis about parents’ perspective

Bernardi¹,

Ceron

2015

JNEP

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Background: The uncertainty is innate in parents of children under bone marrow trasplantation. The parents' view of uncertainty during their children's bone marrow transplantation (TCSE) hasn't yet been explored. There is evidence that uncertainty experienced as a reaction to disease is linked to a lower quality of life. The purpose of this study was to explore the parents' experience of uncertainty during their children's TCSE. Methods: This study applied qualitative approach using phenomenology method. To perform this qualitative study, semistructured interviews were performed. Basing on this analysis, we will evaluate if Mishel's Uncertainty in Illness Theory can explain this experience and specify the connection between uncertainty experienced by family and nursing care during TCSE. A convenience sample of 26 parents were recruited from TCSE unit in Padua Hospital. Each interview was audio recorded, transcribed, and coded for major theme using a content analysis approach. The extracted interviews were analyzed through Colaizzi method. Interview topics were: uncertainty aspects during bone marrow transplantation, means of uncertainty, life aspects influenced by uncertainty, how dealt with uncertainty. Results: From the analysis of the interviews four macro categories were defined: multiple uncertainty's meanings, multiple side of uncertainty, uncertainty side effects, management of uncertainty. The parents will live the consequences of such uncertainty for all their life and they will never find a boundary which lay the end. The bone marrow transplantation doesn't remove uncertainty, but it causes uncertainty. Parents report need for contact with expert nurses to discuss the meaning of their uncertainty, in order to reduce it. Conclusions: The parents' experience of uncertainty can be described following Mishel's Uncertainty in Illness Theory. The lives of the parents are dominated by uncertainty. Nurses need to be educated to be able to encourage parents to communicate their existential questions and the impact of the illness on their life. Enhanced awareness and increased understanding about parents' uncertainty can be important factors in improving nursing work environment and the quality of care presented to pediatric patients and their family.

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Psychological effects of hematopoietic SCT on pediatric patients, siblings and parents: a review

Cited by 146 publications

References 60 publications

Differences in mothers’ and fathers’ psychological distress after pediatric SCT: a longitudinal study

Differences in mothers’ and fathers’ psychological distress after pediatric SCT: a longitudinal study

Children as hematopoietic cell donors in research: when is it approvable?

Uncertainty in pediatric bone marrow transplantation: A qualitative analysis about parents’ perspective

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