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1.  A mixed methods assessment of coping with pediatric cancer 
The purpose of this study was to describe child coping and parent coping assistance with cancer-related stressors during treatment. Fifteen children (aged 6-12) with cancer and their parents (N = 17) completed semi-structured interviews and self-report measures to assess coping and coping assistance. Results suggest families utilized a broad array of approach and avoidance strategies to manage cancer and its treatment. Quantitative and qualitative assessments provided complementary and unique contributions to understanding coping among children with cancer and their parents. Using a mixed methods approach to assess coping provides a richer understanding of families’ experiences, which can better inform clinical practice.
PMCID: PMC3929263  PMID: 24428250
coping; coping assistance; pediatric cancer; mixed methods; childhood cancer
2.  Cumulative Family Risk Predicts Sibling Adjustment to Childhood Cancer 
Cancer  2013;119(13):2503-2510.
Prolonged, intensive treatment regimens often disrupt families of children with cancer. Siblings are at increased risk for distress, but factors underlying this risk have received limited empirical attention. This study examined associations between the family context and sibling distress.
Siblings of children with cancer (ages 8–18, N=209) and parents (186 mothers, 70 fathers) completed measures of sibling distress, family functioning, parenting, and parent posttraumatic stress. Associations between sibling distress and each family risk factor were evaluated. Then, family risks were considered simultaneously by calculating cumulative family risk index scores.
After controlling for socio-demographic covariates, greater sibling distress was associated with more sibling-reported problems with family functioning and parental psychological control, lower sibling-reported maternal acceptance, and lower paternal self-reported acceptance. When risk factors were considered together, results supported a quadratic model in which associations between family risk and sibling distress were stronger at higher levels of risk.
Findings support a contextual model of sibling adjustment to childhood cancer in which elevated distress is predicted by family risk factors, alone and in combination.
PMCID: PMC3686993  PMID: 23576115
Siblings; Cancer; Psychosocial Factors; Family Relations; Parenting
3.  Cancer-related Traumatic Stress Reactions in Siblings of Children with Cancer 
To explore cancer-related posttraumatic stress (PTS) reactions in siblings of children with cancer including prevalence, common symptoms, comorbidity with anxiety and depression, and gender and age-related patterns.
A total of 125 children (63 females) between the ages of 8 and 17 (M = 12.4; SD = 2.9 years) with a brother or sister with cancer, diagnosed 4 to 38 months prior to the study (M = 1.3 years; SD = 6.7 months), completed the Child PTSD Symptom Scale (CPSS), Revised Children's Manifest Anxiety Scale, and Child Depression Inventory-Short Form.
Over half of the sample (60%) scored in the moderate to severe range for PTS and 22% fulfilled full criteria for PTSD based upon CPSS responses. Nearly 75% reported “Feeling upset when you think about or hear about the cancer,” and “Trying not to think about, talk about, or have feelings about the cancer.” Over 60% reported arousal symptoms. PTS symptoms reportedly interfered with functioning for 75% of the sample and co-occurred with anxiety and depressive symptoms. Gender and age-related patterns were not found.
Siblings of children with cancer experience cancer-related PTS reactions and greater attention should be paid to ameliorating their cancer-related distress with empirically-based treatments.
PMCID: PMC3780963  PMID: 23795631
Childhood cancer; siblings; family; posttraumatic stress; adjustment
4.  Screening for Psychosocial Risk in Pediatric Cancer 
Pediatric blood & cancer  2012;59(5):822-827.
Major professional organizations have called for psychosocial risk screening to identify specific psychosocial needs of children with cancer and their families and facilitate the delivery of appropriate evidence-based care to address these concerns. However, systematic screening of risk factors at diagnosis is rare in pediatric oncology practice. Subsequent to a brief summary of psychosocial risks in pediatric cancer and the rationale for screening, this review identified three screening models and two screening approaches (Distress Thermometer [DT], Psychosocial Assessment Tool [PAT]), among many more papers calling for screening. Implications of broadly implemented screening for all patients across treatment settings are discussed.
PMCID: PMC3396795  PMID: 22492662
5.  Cancer Prevention and Screening Practices of Siblings of Childhood Cancer Survivors: A Report from the Childhood Cancer Survivor Study 
To compare the skin and breast/cervical cancer prevention/screening practices of adult siblings of childhood cancer survivors with controls and to identify modifying factors for these practices.
Cross-sectional, self-report data from 2,588 adult siblings of 5+ year survivors of childhood cancer were analyzed to assess cancer prevention/screening practices. Two age, sex and race/ethnicity-matched samples (n=5,915 and n=37,789) of the Behavioral Risk Factor Surveillance System participants served as the comparison populations. Sociodemographic and cancer-related data were explored as modifying factors for sibling cancer prevention/screening practices through multivariable logistic regression.
Compared to controls, siblings were more likely to practice skin cancer prevention behaviors: use of protective clothing (OR 2.85, 95% 2.39-3.39), use of shade (OR 2. 11, 95% 1.88-2.36), use of sunscreen (OR 1.27, 95% 1.14-1.40), and wearing a hat (OR 1.77, 95% 1.58-1.98). No differences were noted for breast/cervical cancer screening including mammography and Pap testing. Having less than a high school education and lack of health insurance were associated with diminished cancer prevention/screening behaviors. Survivor diagnosis, treatment intensity, adverse health, chronic health conditions, and second cancers were not associated with sibling cancer prevention/screening behaviors.
Siblings of cancer survivors report greater skin cancer prevention practices when compared with controls; however, no differences were noted for breast/cervical cancer screening practices. Access to care and lack of education may be associated with decreased cancer prevention/screening behaviors. Interventions are needed to address these barriers.
Research should be directed at understanding the impact of the cancer experience on sibling health behaviors.
PMCID: PMC3392493  PMID: 22576363
Siblings; survivor; childhood cancer; prevention; screening
6.  Shared Decision-Making in Pediatric Allogeneic Blood and Marrow Transplantation: What If There Is No Decision to Make? 
The Oncologist  2012;17(6):881-885.
This article explores the perception of collaborative language as used by physicians during shared decision-making for pediatric patients with cancer. Interviews of patients, parents/guardians and grandparents, and family members were conducted prior to allogeneic blood and marrow transplantation.
Learning Objectives:
After completing this course, the reader will be able to: When the alternative to medical treatment is likely death, ask parents and children whether they agree to the medical plan rather than suggesting they are sharing in “a decision.”Use the model of shared decision in appropriate settings, that is, those in which a bona fide choice exists.
This article is available for continuing medical education credit at
Shared decision-making between health care professionals, patients, parents, and guardians is widely recommended today. However, it is unclear what happens when collaborative language is used by physicians in clinical situations for which patients and parents/guardians believe there is no decision to be made.
We conducted a qualitative study of decision-making for pediatric allogeneic blood and marrow transplantation by interviewing patients, parents, grandparents, donor siblings, and nondonor children after the decision to proceed to transplant but before the transplantation. Each interview was audio recorded, transcribed, and coded for major themes.
In total, 107 members of 30 families at four sites were interviewed, including 15 patients, 22 mothers, 2 stepmothers, 1 grandmother, 19 fathers, 3 stepfathers, 1 grandfather, 13 sibling donors, and 31 nondonor children (siblings, half-siblings, and cousins). In all, 81% of parents/guardians, 73% of patients, 31% of donors, and 29% of other children reported there was no decision to be made. Almost all (88%) parents/guardians indicated that the physician's recommendation was a large determinant in their agreement to go forward with the transplantation. All parents/guardians reported that “agreeing to a plan” was a better description of what their consent entailed.
To be respectful of patients and parents/guardians, we suggest that “agreeing to a plan” may be a better description for what parents/guardians must consider when the alternative to a transplantation is likely death. In this clinical context, the shared decision-making model with a focus on “a decision to be made” may be misleading.
PMCID: PMC3380888  PMID: 22615217
Shared decision-making; Ethics; Pediatric bone marrow transplant
7.  Resilience in Children Undergoing Stem Cell Transplantation: Results of a Complementary Intervention Trial 
Pediatrics  2012;129(3):e762-e770.
Children undergoing stem cell transplantation (SCT) are thought to be at risk for increased distress, adjustment difficulties, and impaired health-related quality of life (HRQL). We report results of a multisite trial designed to improve psychological adjustment and HRQL in children undergoing SCT.
A total of 171 patients and parents from 4 sites were randomized to receive a child-targeted intervention; a child and parent intervention; or standard care. The child intervention included massage and humor therapy; the parent intervention included massage and relaxation/imagery. Outcomes included symptoms of depression and posttraumatic stress, HRQL, and benefit finding. Assessments were conducted by patient and parent report at admission and SCT week+24.
Across the sample, significant improvements were seen on all outcomes from admission to week+24. Surprisingly, patients who had SCT reported low levels of adjustment difficulties at admission, and improved to normative or better than average levels of adjustment and HRQL at week+24. Benefit finding was high at admission and increased at week+24; however, there were no statistically significant differences between intervention arms for any of the measures.
Although the results do not support the benefits of these complementary interventions in pediatric SCT, this may be explained by the remarkably positive overall adjustment seen in this sample. Improvements in supportive care, and a tendency for patients to find benefit in the SCT experience, serve to promote positive outcomes in children undergoing this procedure, who appear particularly resilient to the challenge.
PMCID: PMC3289525  PMID: 22311995
stem cell transplantation; children; depression; posttraumatic stress; resilience
8.  Psychological Outcomes of Siblings of Cancer Survivors: A Report from the Childhood Cancer Survivor Study 
Psycho-oncology  2010;20(12):1259-1268.
To identify risk factors for adverse psychological outcomes among adult siblings of long-term survivors of childhood cancer.
Cross-sectional, self-report data from 3,083 adult siblings (mean age 29 years, range 18-56 years) of 5+ year survivors of childhood cancer were analyzed to assess psychological outcomes as measured by the Brief Symptom Inventory-18 (BSI-18). Sociodemographic and health data, reported by both the siblings and their matched cancer survivors were explored as risk factors for adverse sibling psychological outcomes through multivariable logistic regression.
Self-reported symptoms of psychological distress, as measured by the global severity index of the BSI-18, were reported by 3.8% of the sibling sample. Less than 1.5% of siblings reported elevated scores on two or more of the subscales of the BSI-18. Risk factors for sibling depression included having a survivor brother (OR 2.22, 95% CI 1.42-3.55), and having a survivor with impaired general health (OR 2.15, 95% CI 1.18-3.78). Siblings who were younger than the survivor reported increased global psychological distress (OR 1.81, 95% CI 1.05-3.12), as did siblings of survivors reporting global psychological distress (OR 2.32, 95% CI 1.08-4.59). Siblings of sarcoma survivors reported more somatization than did siblings of leukemia survivors (OR 2.07, 95% CI 1.05-3.98).
These findings suggest that siblings of long-term childhood cancer survivors are psychologically healthy in general. There are, however, small subgroups of siblings at risk for long-term psychological impairment who may benefit from preventive risk-reduction strategies during childhood while their sibling with cancer is undergoing treatment.
PMCID: PMC3223600  PMID: 22114043
9.  Psychometric Properties of the FACES-IV in a Pediatric Oncology Population 
Journal of Pediatric Psychology  2010;36(5):528-538.
Objective The purpose of this study was to examine the psychometric properties of the Family Adaptability and Cohesion Evaluation Scales, version IV (FACES-IV) in families of children with cancer. Methods As part of a larger program of research, 147 mothers and 40 fathers from 162 families of children with cancer completed the FACES-IV. Parents and one healthy child from each family (77 girls; age M = 12.8, SD = 2.8) completed additional measures of family functioning and parenting. Results Internal consistencies above .70 were found for all subscales except one (Enmeshed, α = .65). Intercorrelations of the subscales were similar to the validation sample but seemed inconsistent with the Circumplex Model on which the measure is based. Analyses raised questions regarding construct validity for the Enmeshed and Rigid subscales. Conclusions These preliminary findings suggest that more research is needed prior to widespread use of the FACES-IV in pediatric oncology populations.
PMCID: PMC3131703  PMID: 20147435
assessment; childhood cancer; FACES-IV; family functioning; psychometrics
10.  Complementary Therapies for Children Undergoing Stem Cell Transplant: Report of A Multisite Trial 
Cancer  2010;116(16):3924-3933.
Children undergoing stem cell transplant (SCT) experience high levels of somatic distress and mood disturbance. This trial evaluated the efficacy of complementary therapies (massage, humor therapy, relaxation/imagery) for reducing distress associated with pediatric SCT.
Across 4 sites, 178 pediatric patients scheduled to undergo SCT were randomized to a child-targeted intervention involving massage and humor therapy (HPI-C), the identical child intervention plus a parent intervention involving massage and relaxation/imagery (HPI-CP) or standard care (SC). Randomization was stratified by site, age, and type of transplant. The interventions began at admission and continued through SCT week +3. Primary outcomes included patient and parent reports of somatic distress and mood disturbance obtained weekly from admission through week +6 using the BASES scales. Secondary outcomes included length of hospitalization, time to engraftment, and usage of narcotic analgesic and antiemetic medications.
A mixed model approach was used to assess longitudinal trends of patient and parent-report outcomes and test differences between groups on these measures. Significant changes across time were observed on all patient and parent-report outcomes. However, no significant differences between treatment arms were found on the primary outcomes. Similarly, no signficant between group differences were noted on any of the medical variables as secondary outcomes.
Results of this multi-site trial failed to document significant benefits of complementary interventions in the pediatric SCT setting.
PMCID: PMC2919609  PMID: 20626016
stem cell transplant; children; complementary therapy; massage; symptoms
11.  Supporting Siblings of Children with Cancer: A Need for Family–School Partnerships 
School mental health  2010;2(2):72-81.
When a child has a chronic illness, it is readily apparent that the family and school must enter into a partnership to assure that the educational needs of the child are being met. A family–school partnership, however, may also be important to address the needs of siblings of children with chronic illness. Siblings of children with diseases such as cancer are often highly distressed and may experience decrements in academic achievement within 2 years of diagnosis. Teachers and classroom peers may be a valuable source of support to these children. This manuscript documents the mental health needs of siblings of children with cancer, describes their perceptions regarding amount of social support received and importance of social support across home and school sources, and reveals important associations between social support and more positive emotional, behavioral, and academic functioning. These findings suggest that family–school partnerships may be valuable to address the mental health needs of siblings of children with cancer.
PMCID: PMC2889700  PMID: 20582154
Siblings of children with chronic illness; Social support; Family–school partnerships
12.  Family Functioning and Posttraumatic Stress Disorder in Adolescent Survivors of Childhood Cancer 
The purpose of this study was to investigate family functioning and relationships between family functioning and posttraumatic stress disorder in adolescent survivors of childhood cancer. To assess family functioning, 144 adolescent cancer survivors 1 to 12 years post-cancer treatment (M=5.3 years) and their parents completed the Family Assessment Device (FAD). To assess Posttraumatic Stress Disorder (PTSD), adolescents were administered a structured diagnostic interview. Nearly half (47%) of the adolescents, one-fourth (25%) of mothers, and one-third (30%) of fathers reported poor family functioning, exceeding the clinical cut-off on four or more FAD subscales. Families in which the cancer survivor had PTSD (8% of the sample) had poorer functioning than other families in the areas of problem-solving, affective responsiveness and affective involvement. Three-fourths of the adolescents with PTSD arose from families with categorically poor family functioning. A surprisingly high rate of poor family functioning was reported in these families of adolescent cancer survivors. Adolescents with PTSD were over five times as likely to emerge from a poorly functioning family compared to a well-functioning one. This study provides evidence that family functioning is related to cancer-related posttraumatic reactions in adolescent survivors.
PMCID: PMC2777540  PMID: 19803607
cancer survivors; adolescents; family functioning; posttraumatic stress
13.  Brief Report: Problem Solving and Maternal Distress at the Time of a Child's Diagnosis of Cancer in Two-Parent Versus Lone-Parent Households 
Journal of Pediatric Psychology  2009;34(8):817-821.
Objective To examine negative affectivity and problem-solving abilities for lone mothers and those who are married/partnered subsequent to a child's diagnosis with cancer. Methods Negative affectivity and problem-solving strategies were assessed for 464 mothers (87 lone and 377 married/partnered) within 2–16 weeks of their child's diagnosis with cancer. Results The two groups of mothers did not differ significantly on measures of perceived posttraumatic stress or problem-solving; lone mothers reported significantly more symptoms of depression. This difference was no longer significant when maternal education was taken into account. Conclusions Negative affectivity and problem-solving abilities were similar for lone mothers and those that are married/partnered shortly after their child has been diagnosed with cancer. Findings are discussed within the context of contemporary strategies to assess marital status as proxy variable for various underlying constructs.
PMCID: PMC2729682  PMID: 19129268
cancer; quality of life; parent stress
14.  Conducting a Randomized Clinical Trial of an Psychological Intervention for Parents/Caregivers of Children with Cancer Shortly after Diagnosis 
Journal of Pediatric Psychology  2008;34(8):803-816.
Objective To report acceptability, feasibility, and outcome data from a randomized clinical trial (RCT) of a brief intervention for caregivers of children newly diagnosed with cancer. Method Eighty-one families were randomly assigned following collection of baseline data to Intervention or Treatment as Usual (TAU). Recruitment and retention rates and progression through the protocol were tracked. Measures of state anxiety and posttraumatic stress symptoms served as outcomes. Results Difficulties enrolling participants included a high percentage of newly diagnosed families failing to meet inclusion criteria (40%) and an unexpectedly low participation rate (23%). However, movement through the protocol was generally completed in a timely manner and those completing the intervention provided positive feedback. Outcome data showed no significant differences between the arms of the RCT. Conclusions There are many challenges inherent in conducting a RCT shortly after cancer diagnosis. Consideration of alternative research designs and optimal timing for interventions are essential next steps.
PMCID: PMC2734126  PMID: 19091806
anxiety; caregivers; intervention; parents; pediatric cancer; posttraumatic stress; randomized clinical trial
15.  Parental Depression and Family Environment Predict Distress in Children Prior to Stem-Cell Transplantation 
To examine parental symptoms of depression, family environment, and the interaction of these parent and family factors in explaining severity of distress in children scheduled to undergo stem cell/bone marrow transplantation (SCT).
A self-report measure of illness related distress, adjusted to reflect the experience of medical diagnosis and associated stressors was completed by 146 youth scheduled to undergo SCT. Measures of parental depressive symptoms and family environment (cohesion, expressiveness, and conflict) were completed by the resident parent.
Parental symptoms of depression, family cohesion, and family expressiveness emerged as significant predictors of child-reported distress. Additionally, significant Parental Depression x Family Cohesion and Parental Depression x Family Expressiveness interactions emerged as predictors of the intensity of the child's distress. When parental depressive symptomatology was high, child distress was high regardless of family environment. However, when parental depressive symptomatology was low, family cohesion and expression served as protective factors against child distress.
Parental depressive symptomatology and family functioning relate to child distress in an interactive manner. These findings inform future directions for research, including interventions for parents aimed at promoting child adjustment during the pediatric cancer experience.
PMCID: PMC2731658  PMID: 19322103
childhood cancer; stem cell transplantation; family environment; depression; adjustment
16.  The Psychosocial Assessment Tool (PAT2.0): Psychometric Properties of a Screener for Psychosocial Distress in Families of Children Newly Diagnosed with Cancer 
Psychometric properties of the Psychosocial Assessment Tool 2.0 (PAT2.0), a brief screener for psychosocial risk in families of children with cancer, are presented.
Female (N =132) and male (N =72) caregivers of 141 children newly diagnosed with cancer completed the PAT2.0 and measures of child behavior symptoms, anxiety, acute stress, and family functioning to establish validity. Internal consistency and test–retest reliability of the PAT2.0 were also examined.
Internal consistency and two-week test–retest for the PAT2.0 Total score was strong. Validity for the PAT2.0 was supported by significant correlations between the PAT2.0 subscales and measures of corresponding constructs. PAT2.0 Total scores were correlated with acute stress and child behavior symptoms for both mothers and fathers. Receiver-Operating Characteristic curves provided preliminary support for the proposed cutoffs.
The PAT2.0 Total score is a useful screening tool for family psychosocial risk in the pediatric oncology population.
PMCID: PMC2819976  PMID: 17609228
assessment; families; parents; pediatric oncology; risk
17.  Acute Stress in Parents of Children Newly Diagnosed With Cancer 
Pediatric blood & cancer  2008;50(2):289-292.
Acute Stress Disorder (ASD) and subclinical symptoms of acute stress (SAS) may be a useful framework for understanding the psychological reactions of mothers and fathers of children newly diagnosed with a pediatric malignancy.
Patients and Methods
Mothers (N = 129) and fathers (N = 72) of 138 children newly diagnosed with cancer completed questionnaires assessing acute distress, anxiety, and family functioning. Demographic data were also gathered. Inclusion criteria were: a confirmed diagnosis of a pediatric malignancy in a child under the age of 18 years without prior chronic or life threatening illness and fluency in English or Spanish.
Descriptive statistics and multiple linear regressions were used to examine predictors of SAS. Fifty-one percent (N = 66) of mothers and 40% (N = 29) of fathers met DSM-IV diagnostic criteria for ASD. The majority of the sample reported experiencing at least one SAS. General anxiety, but not family functioning, was a strong predictor of SAS in both mothers and fathers even after controlling for demographic characteristics.
Immediately following their child’s diagnosis of cancer, most mothers and fathers experience SAS, with a subsample meeting criteria for ASD. More anxious parents are at heightened risk of more intense reactions. The findings support the need for evidence-based psychosocial support at diagnosis and throughout treatment for families who are at risk for acute distress reactions.
PMCID: PMC2811161  PMID: 17514742
pediatric oncology; acute stress disorder; parents; traumatic stress
18.  Evidence-based Assessment in Pediatric Psychology: Family Measures 
Journal of Pediatric Psychology  2007;33(9):1046-1061.
Objective To provide a review of the evidence base of family measures relevant to pediatric psychology. Method Twenty-nine family measures were selected based upon endorsement by Division 54 listserv members, expert judgment, and literature review. Spanning observational and self-report methods, the measures fell into three broad assessment categories: Family functioning, Dyadic family relationships, and Family functioning in the context of childhood chronic health conditions. Measures were categorized as: “Well-established”, “Approaching well-established”, or “Promising.” Results Nineteen measures met “well-established” criteria and the remaining ten were “approaching well-established.” “Well-established” measures were documented for each of the broad assessment categories named above. Conclusions Many measures deemed “well-established” in the general population are proving to be reliable and useful in pediatric samples. More evidence of the validity of family measures is needed in this context. This review should prove helpful to clinicians and researchers as they strive to make evidence-based decisions regarding family measures.
PMCID: PMC2639492  PMID: 17905801
assessment; evidence-based; family measurement; pediatric psychology

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