Parental stress before, during, and after pediatric stem cell transplantation: a review article

Vrijmoet-Wiersma, C. M. Jantien; Egeler, R. Maarten; Koopman, Hendrik M.; Norberg, Annika Lindahl; Grootenhuis, M.A.

doi:10.1007/s00520-009-0685-4

Cited by 36 publications

(49 citation statements)

References 38 publications

(96 reference statements)

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“…Despite these advancements, pediatric HSCT remains a physically and emotionally demanding treatment for children and their families. Transplantationrelated morbidity and mortality remain substantial [1], and research into the psychosocial impact of pediatric HSCT has demonstrated high levels of family distress despite standard institutional supportive care interventions [2,3].…”

Section: Introductionmentioning

confidence: 99%

Prevalence and Impact of Financial Hardship among New England Pediatric Stem Cell Transplantation Families

Bona

London

Guo

et al. 2015

Biology of Blood and Marrow Transplantation

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Poverty is correlated with negative health outcomes in pediatric primary care and subspecialties; its association with childhood hematopoietic stem cell transplantation (HSCT) patterns of care and clinical outcomes is not known. We describe family-reported financial hardship at a primary referral center in New England and explore the relationship between measures of poverty and patterns of care and clinical outcomes. Forty-five English-speaking parents of children after allogeneic HSCT in the prior 12 months completed a 1-time survey (response rate 88%). Low-income families, defined as ≤200% federal poverty level (FPL), were compared with all others. Eighteen (40%) families reported pre-HSCT incomes ≤200% FPL. Material hardship, including food, housing, or energy insecurity was reported by 17 (38%) families in the cohort. Low-income families reported disproportionate transplantation-related income losses, with 7 (39%) reporting annual income losses of >40% compared with 2 (18%) wealthier families (P = .02). In univariate analyses, 11 (61%) low-income children experienced graft-versus-host disease (GVHD) of any grade in the first 180 days after HSCT compared with 2 (7%) wealthier children (P = .004). We conclude that low income and, in particular, material hardship, are prevalent in a New England pediatric HSCT population and represent targets for improvement in quality of life. The role of poverty in mediating GVHD deserves further investigation in larger studies that can control for known risk factors and may provide a targetable source of transplantation-associated morbidity.

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Section: Introductionmentioning

confidence: 99%

Prevalence and Impact of Financial Hardship among New England Pediatric Stem Cell Transplantation Families

Bona

London

Guo

et al. 2015

Biology of Blood and Marrow Transplantation

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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%

“…More longitudinal studies are needed to better understand mothers' and fathers' psychological distress and related factors after pediatric SCT. 7 This longitudinal study examined maternal and paternal psychological distress, measured by symptoms of depression and anxiety, before, and 1 and 2 years post SCT. These measures were used successfully in our previous work with this population and with parents of children with cancer.…”

Section: Introductionmentioning

confidence: 99%

“…These measures were used successfully in our previous work with this population and with parents of children with cancer. 13,22 Guided by the multivariable model for the impact of chronic illness in the family we adapted in our previous work [22][23][24] and current empirical evidence with parents facing pediatric cancer and SCT, 3,7,13,22 we also examined the association between parental psychological distress and parental age; disease (diagnosis) and treatment variables (radiation history), and child's age, health status and behavior. Again, based on previous reports on mothers facing childhood cancer, 12,13,18,19,21 we hypothesized that (a) psychological distress will decrease over time for both mothers and fathers; (b) mothers will report more distress than fathers; (c) younger parents will report greater distress, and given that mothers are typically the primary caregiver; (d) child's disease, treatment, health status and behavior will have greater impact on maternal than paternal outcomes.…”

Section: Introductionmentioning

confidence: 99%

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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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“…[1][2][3] In addition to interventions like radio-and chemo-therapy, some children must also endure HSCT, which entails repeated procedures, pain and isolation. It has previously been reported that the child's illness and treatment have an important role in the parents' lives for many years.…”

Section: Introductionmentioning

confidence: 99%

Hematopoietic stem cell transplantation in children with cancer and the risk of long-term psychological morbidity in the bereaved parents

Jalmsell

Onelöv

Steineck

et al. 2010

Bone Marrow Transplant

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We have investigated whether hematopoietic stem cell transplantation (HSCT) before the death of children with cancer has a long-term effect on the physical and psychological well-being of the parents. A nationwide questionnaire was sent out to all bereaved parents in Sweden who had lost a child due to a malignancy from 1992 to 1997. Self-reported levels of anxiety, depression and quality of life as well as overall psychological and physical well-being in bereaved parents of children who underwent HSCT were compared with bereaved parents whose children did not receive a transplant. Bereaved parents whose children underwent HSCT had, according to a visual digital scale, an increased relative risk (RR) of long-term anxiety (RR 1.5; 95% confidence interval (CI) 1.0-2.1), poor psychological well-being (RR1.3; 95% CI 1.1-1.5), low quality of life (RR 1.4; 95% CI 1.2-1.7) and poor physical health (RR 1.3; 95% CI 1.1-1.5), whereas the State-Trait Anxiety Inventory and 'The Go¨teborg Quality of Life Instrument' were non-significantly increased (RR 1.3; 95% CI 0.8-2.3 and RR 1.7; 95% CI 0.9-3.3, respectively). The risks of these consequences were further augmented in case of multiple HSCT. We suggest that bereaved parents of children undergoing HSCT may be at greater risk of decreased psychological well-being than other bereaved parents of children with cancer.

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Parental stress before, during, and after pediatric stem cell transplantation: a review article

Cited by 36 publications

References 38 publications

Prevalence and Impact of Financial Hardship among New England Pediatric Stem Cell Transplantation Families

Prevalence and Impact of Financial Hardship among New England Pediatric Stem Cell Transplantation Families

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

Hematopoietic stem cell transplantation in children with cancer and the risk of long-term psychological morbidity in the bereaved parents

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