Parent Quality of Life After Disclosure of Pediatric Oncology Germline Sequencing Results.

PURPOSE: To characterize parents' quality of life (QoL) after germline genomic sequencing for their children with cancer. METHODS: Participants were n = 104 parents of children with cancer enrolled in a prospective study of clinical tumor and germline genomic sequencing. Parents completed surveys at study consent (T0), before disclosure of their child's germline results (T1), and again ≥5 weeks after results disclosure (T2). Bivariate associations with QoL were examined, followed by a multivariable regression model predicting parents' psychological distress. RESULTS: At T2, parental distress significantly differed by their children's germline result type (positive, uncertain, negative; P = .038), parent relationship status (P = .04), predisclosure genetics knowledge (P = .006), and predisclosure worry about sequencing (P < .001). Specifically, parents of children with positive (ie, pathogenic or likely pathogenic) results experienced greater distress than those of children with negative results (P = .029), as did parents who were single, more knowledgeable about genetics, and with greater worry. In the adjusted regression model, a positive germline result remained significantly associated with parents' lower QoL at T2 follow-up (F [4,92] = 9.95; P < .001; R2 = .30; ß = .19; P = .031). CONCLUSION: Germline genomic sequencing for children with cancer is associated with distress among parents when revealing an underlying cancer predisposition among their affected children. Genetic education and counseling before and after germline sequencing may help attenuate this impact on QoL by addressing parents' concerns about test results and their health implications. Assessing parents' worry early in the testing process may also aid in identifying those most likely in need of psychosocial support.

Adolescent and Young Adult Understanding of Their Childhood Cancer Predisposition Diagnosis: A Qualitative Study.

We characterized germline genetic test result understanding in adolescents and young adults (AYAs) (n = 21) with cancer 1-3.9 years post-disclosure using semistructured qualitative interviews. Most AYAs articulated their cancer risk; however, 5 did not remember results and a subset demonstrated misperceptions regarding risk or confusion regarding their medical care. These findings highlight variability in AYA understanding warranting further inquiry.

Profiles of Resilience, Distress, and Posttraumatic Growth in Parents of Children with Cancer and the Relation to Subsequent Parenting and Family Functioning.

OBJECTIVE: The aim of this study was to identify patterns of distress and growth in parents of children with cancer and examine associations with subsequent parenting, parent-child relationship, and family environment. METHODS: Participants included children with cancer history (8-17 years) stratified by time since diagnosis and their parent. At enrollment, parents (n = 254) reported depression and anxiety, and post-traumatic stress symptoms, posttraumatic growth (PTG), and benefit finding in relation to their child's cancer. Three years later, children (n = 214) reported parenting behavior, parent reactions to their distress, and family environment. Parents reported their reaction to children's distress and qualities of the parent-child relationship. RESULTS: Latent profile analysis empirically identified 3 cross-sectional profiles using baseline data: "Resilience, High Growth" (50%), characterized by the lowest distress and the highest PTG/benefit finding; "Moderate Distress with Growth" (33%), characterized by relatively high levels of all indicators; and "Resilience, Low Growth" (17%), characterized by relatively low distress with low PTG/benefit finding. Membership in profiles was associated with parent gender; parents' stressful life events; socioeconomic status; and child diagnosis, on versus off treatment status, and treatment intensity. Parent membership in the Moderate Distress with Growth profile was generally linked with poorer parenting behavior, parent-child relationship quality, and family functioning. CONCLUSION: The majority of parents exhibited resilience and growth. However, a subset of parents displaying moderate distress may be at risk for subsequent parenting and family functioning challenges. Findings further highlight the importance of screening for even moderate parent distress and the possible impact of parent psychosocial interventions indirectly on parenting and family functioning.

Knowledge Is Power: Benefits, Risks, Hopes, and Decision-Making Reported by Parents Consenting to Next-Generation Sequencing for Children and Adolescents with Cancer.

OBJECTIVES: To qualitatively describe parent perspectives of next-generation genomic sequencing (NGS) for their children with cancer, including perceived benefits, risks, hopes/expectations, and decision-making process when consenting or not consenting to NGS and prior to result disclosure. DATA SOURCES: Qualitative interviews were used. CONCLUSION: Altruism is an important factor in parents consenting to NGS testing, as well as making sense of their child's cancer and legacy building. Parents described realistic hopes and expectations associated with NGS participation. Although parents endorsed the likelihood of no medical benefit, those consenting to NGS felt there was no reason not to participate. Parents declining participation expressed avoidance of worry and parent guilt if a germline variant were to be disclosed. IMPLICATIONS FOR NURSING PRACTICE: As NGS evolves into a component of the routine diagnostic workup for pediatric cancer patients, genetic nurses play a role in conducting informed consent conversations and ensuring that patients and families have realistic hopes and expectations associated with NGS.

Development and testing of the Hogan Inventory of Bereavement short form for children and adolescents.

To reduce response burden for bereaved children and adolescents, we provide data on the development and psychometric testing of a short form of the Hogan Sibling Inventory of Bereavement (HSIB). The resulting measure of grief symptoms and personal growth was renamed the Hogan Inventory of Bereavement - Short Form (Children and Adolescents; HIB-SF-CA). Psychometric properties were evaluated in a sample of 86 bereaved siblings. Instrument development and validation research design methods were used. Evidence of strong reliability and convergent validity indicates that the 21-item HIB-SF-CA is comparable to the original 46-item HSIB in measuring grief and personal growth in this population.

A quest for meaning: A qualitative exploration among children with advanced cancer and their parents.

OBJECTIVE: Meaning-making may assist individuals in adaptation to stressful life events, particularly bereavement. However, few studies have examined meaning-making among pediatric populations with advanced illness to understand how this process unfolds before the child's death. This study explores meaning-making pre-bereavement among children with advanced cancer and their parents. METHODS: As part of a larger study examining shared decision-making near the end of life, 24 children with advanced cancer and/or high-risk cancer, 26 mothers, and 11 fathers participated in individual, semi-structured interviews. Analyses focused on questions regarding meaning-making. Four coders analyzed the data via directed content analysis. RESULTS: Three major meaning-making themes emerged: (1) sense-making (i.e., unknown, no sense/meaning, religious/spiritual explanations, scientific explanations), (2) benefit-finding, and (3) purpose/legacy. Some stated they were unable to make sense of the diagnosis, because there was no reason, they were not there yet, or they were dealing with the situation and moving forward. Others reported finding meaning through spiritual and scientific explanations. Many identified benefits related to the child's illness, such as personal growth and stronger relationships. Some parents expressed their purpose in life was to live for their children, while others shared their child's legacy as a way to find meaning. CONCLUSIONS: Our findings highlight the struggle children and parents often face when attempting to make sense of the child's advanced or high-risk illness. Clinicians might consider if meaning-centered interventions designed for use in adults at the end of life and bereaved parents may be helpful for children with advanced or high-risk cancer and their parents.

The Influence of Parent Distress and Parenting on Bereaved Siblings' Externalizing Problems.

OBJECTIVES: Bereaved siblings experience more externalizing problems compared to non-bereaved peers and norms; however, the mechanisms explaining this phenomenon have not been empirically examined. This study tested the serial indirect effects of sibling bereavement on adolescents' externalizing problems through parent distress (i.e., internalizing symptoms) and parenting (i.e., parenting behaviors, parent-adolescent communication). METHODS: During home visits, 72 bereaved adolescents (ages 10-18) whose brother/sister died from cancer and 60 comparison peers reported about their externalizing problems and their mothers' and fathers' parenting behaviors (warmth, behavioral control, psychological control) and parent-adolescent communication (open communication, problematic communication). Mothers and fathers reported their own internalizing symptoms. RESULTS: Bereaved siblings reported more externalizing problems (p =.048) and bereaved mothers reported more internalizing symptoms relative to the comparison group (p =.015). Serial multiple mediation models indicated that elevated externalizing problems were partially explained by both bereaved mothers' internalizing symptoms and parenting and communication (less warmth [CI: 0.04, 0.86], more psychological control [CI: 0.03, 0.66], and more problematic mother-adolescent communication [CI: 0.03, 0.79]), with a significant indirect effect also emerging for open mother-adolescent communication [CI: 0.05, 1.59]. Bereaved fathers did not significantly differ in internalizing symptoms from comparison fathers (p =.453), and no significant indirect effects emerged for fathers. CONCLUSIONS: Elevated externalizing problems in bereaved siblings may result from mothers' distress and the impact on their parenting and communication. Targeting adjustment and parenting in bereaved mothers following a child's death may reduce externalizing problems in bereaved siblings. Research to evaluate family-centered interventions is needed.

Factors Associated with Declining to Participate in a Pediatric Oncology Next Generation Sequencing Study.

PURPOSE: For the advances of pediatric oncology next generation sequencing (NGS) research to equitably benefit all children, a diverse and representative sample of participants is needed. However, little is known about demographic and clinical characteristics that differentiate families who decline enrollment in pediatric oncology NGS research. METHODS: Demographic and clinical data were retrospectively extracted for 363 pediatric oncology patients (0-21 years) approached for enrollment on Genomes for Kids (G4K), a study examining the feasibility of comprehensive clinical genomic analysis of tumors and paired normal samples. Demographic and clinical factors that significantly differentiated which families declined were subsequently compared to enrollment in Clinical Implementation of Pharmacogenetics (PG4KDS) for 348 families, a pharmacogenomics study with more explicit therapeutic benefit examining genes affecting drug responses and metabolism. RESULTS: Fifty-three (14.6%) families declined enrollment in G4K. Race/ethnicity was the only variable that significantly differentiated study refusal using multivariate logistic regression, with families of black children more likely to decline enrollment compared to families of non-Hispanic or Hispanic white children. Reasons for declining G4K were generally consistent with other pediatric genomics research, with feeling overwhelmed and insurance discrimination fears most frequently cited. Families of black children were also more likely to decline enrollment in PG4KDS. Thirteen (3.7%) of the 348 families approached for both studies declined PG4KDS. CONCLUSION: Race/ethnicity differentiated study declination across two different pediatric oncology genomics studies, suggesting enrollment disparities in the context of pediatric oncology genomics research. Genomics research participant samples that do not fully represent racial and ethnic minorities risk further exacerbating health disparities. Additional work is needed to understand the nuances of parental decision making in genomic research and facilitate enrollment of diverse patient populations.

Impact of the parent-child relationship on psychological and social resilience in pediatric cancer patients.

OBJECTIVES: The primary objective of this research was to examine patterns of parent-child relationship functioning among pediatric cancer survivors and their caregivers across a variety of relationship indicators (ie, Involvement, Attachment, Communication, Parenting Confidence, and Relational Frustration), and evaluate how these factors relate to psychosocial outcomes in survivors. METHODS: Young survivors aged 10 to 18 and their caregivers (N = 165) completed measures related to posttraumatic stress and general distress. Caregivers also completed assessments of parent-child relationship functioning, and survivors completed assessments of social functioning. Latent profile analysis was performed to identify patterns of relationship functioning. Medical, demographic, and parent functioning variables were examined as predictors, and youth's psychological and social functioning were examined as outcomes. RESULTS: A three-class solution was the best fit to the data. The struggling parent-child relationship profile (15%) evidenced below average levels of parent-child relationship functioning across several domains. The normative parent-child relationship (60%), was characterized by average levels of parent-child relationship functioning across all domains. Finally, the high-involved parent-child relationship profile (25%) demonstrated above average levels of parent-child relationship functioning in involved activities, communication, and attachment and normative levels of functioning across all other domains. Medical and parent functioning factors predicted profile membership. In turn, profile membership was associated with survivor psychological and social outcomes. CONCLUSION: Findings document the importance of extending existing research to examine patterns of parent-child relationship functioning, which may serve as a clinically relevant target to improve psychological and social outcomes in young survivors of childhood cancer.

Long-term trajectories of depression symptoms in mothers of children with cancer.

OBJECTIVE: To identify trajectories of depression symptoms in mothers of children with cancer from diagnosis/relapse through 5 years and examine maternal factors at diagnosis/relapse predicting membership in these trajectories. METHOD: Mothers (n = 327; Mage = 37.6 years, SD = 7.7 years; 85.9% White) reported depression symptoms near the time of their child's diagnosis/relapse and then again at 1-, 3-, and 5-years postdiagnosis/relapse. Mothers also reported perceived stress, coping (primary control, secondary control, and disengagement coping), and spirituality near the time of diagnosis. Latent class growth analysis was used to identify latent trajectories of depression symptoms, and a 3-step multinomial logistic regression tested covariate predictors of membership in the trajectories. RESULTS: Three trajectories were identified: "low depression symptoms" (63.3%), "moderate depression symptoms" (31.5%), and "high depression symptoms" (5.2%). Mothers who used more primary and secondary control coping were more likely to be in the low depression symptom trajectory as compared with the moderate (OR = 1.64, p = .024 and OR = 1.38, p = .013, respectively) or high trajectories (OR = 1.99, p = .008 and OR = 1.81, p = .001, respectively). CONCLUSIONS: Although mothers of children with cancer generally displayed improved mental health further from diagnosis, mothers with more depression symptoms after diagnosis/relapse displayed substantial stability in depression symptoms over the 5 years. Mothers of children with cancer may benefit from early screening of mental health and coping strategies, as well as interventions to bolster effective coping for those with elevated depression symptoms. (PsycINFO Database Record (c) 2020 APA, all rights reserved).

Impact of Race and Socioeconomic Status on Psychologic Outcomes in Childhood Cancer Patients and Caregivers.

Complex relationships between race and socioeconomic status have a poorly understood influence on psychologic outcomes in pediatric oncology. The Family Symptom Inventory was used to assess symptoms of depression and anxiety in pediatric patients with cancer and their caregivers. Separate hierarchical linear regression models examined the relationship between demographic variables, cancer characteristics, socioeconomic status, and access to care and patient or caregiver depression/anxiety. Participants included 196 pediatric patients with cancer (mean age, 11.21 y; 49% African American) and their caregivers. On average, caregivers reported low levels of depression/anxiety. Symptoms of depression and anxiety in patients were correlated with poorer mental health in caregivers (r=0.62; P<0.01). Self-reported financial difficulty (ß=0.49; P<0.001) and brain cancer diagnosis for their child (ß=0.42; P=0.008) were significantly associated with depression and anxiety in caregivers. Analysis did not reveal significant associations between race, household income, or access to care and patient or caregiver depression/anxiety. Perception of financial hardship can adversely impact mental health in caregivers of children with cancer. Psychosocial assessment and interventions may be especially important for caregivers of patients with brain tumors and caregivers who report feeling financial difficulty.

Grief and growth in bereaved siblings: Interactions between different sources of social support.

The objective was to characterize the relation between different sources of school-based social support (friends, peers, and teachers) and bereaved siblings' grief and grief-related growth and to examine whether nonparental sources of social support buffer the effects of low parent support on bereaved siblings. Families (N = 85) were recruited from cancer registries at 3 pediatric institutions 3-12 months after a child's death. Bereaved siblings were 8-18 years old (M = 12.39, SD = 2.65) and majority female (58%) and White (74%). During home visits, siblings reported their perceptions of social support from parental and nonparental sources using the Social Support Scale for Children, as well as grief and grief-related growth using the Hogan Sibling Inventory of Bereavement. Parent, friend, and teacher support were positively correlated with grief-related growth, whereas parent and peer support were negatively correlated with grief for adolescents. Teacher and friend support significantly moderated the association between parent support and grief such that teacher and friend support accentuated the positive effects of parent support. Friend and peer support moderated associations between parent support and grief/growth for adolescents but not children. School-based social support, namely from friends, peers, and teachers, appears to facilitate the adjustment of bereaved siblings. Findings suggest that bereaved siblings may benefit from enhanced support from teachers and friends regardless of age, with middle/high school students particularly benefitting from increased support from close friends and peers. (PsycINFO Database Record

Using the research domain criteria framework to track domains of change in comorbid PTSD and SUD.

OBJECTIVES: Comorbidity in diagnosis raises critical challenges for psychological assessment and treatment. The Research Domain Criteria (RDoC) Project, launched by the National Institutes of Mental Health, proposes domains of functioning as a way to conceptualize the overlap between comorbid conditions and inform treatment selection. However, further research is needed to understand common comorbidities (e.g., posttraumatic stress disorder [PTSD] and substance use disorder [SUD]) from an RDoC framework and how existing evidence-based treatments would be expected to promote change in the RDoC domains of functioning. To address these gaps, the current study examined change in 3 RDoC domains (Negative Valence Systems, Arousal/Regulatory Systems, and Cognitive Systems) during concurrent prolonged exposure (PE) and substance use treatment. METHOD: Participants were 85 individuals with co-occurring PTSD and SUD who received PE in a residential substance use treatment facility. They completed an experimental task to assess physiological reactivity to trauma and alcohol cues at pre- and posttreatment. RESULTS: Results showed decreased severity in all 3 RDoC domains of interest across the study period. Pairwise comparisons between domains revealed that Arousal/Regulatory Systems had the lowest severity at posttreatment. Subsequent hierarchical linear regression analyses showed that posttreatment domain scores were associated with posttreatment cue reactivity for trauma and alcohol cues. CONCLUSIONS: The findings provide preliminary evidence of how the RDoC domains of functioning may change with evidence-based treatments and are discussed in terms of the assessment and treatment of mental health problems using the RDoC framework. (PsycINFO Database Record

Emotion Socialization in the Context of Childhood Cancer: Perceptions of Parental Support Promotes Posttraumatic Growth.

Background: Examined youth's perceptions of parental reactions to youth's cancer and non-cancer event-related distress and the link between perceptions of parental reactions and youth posttraumatic growth (PTG). Method: Participants included 201 youth (8­21 years) with a history of cancer. Participants self-identified their most stressful life event, which were characterized as cancer or non-cancer related, and then completed measures in reference to this event assessing (1) their perceptions of parent reactions to event-related distress and (2) PTG. Results: Youth who identified a cancer-related event perceived their parents as reacting with more support and reassurance/distraction than those who identified a non-cancer event. Perceptions of parental support, reassurance/distraction, and magnification of youth distress were associated with more PTG, with event type (cancer vs. non-cancer) indirectly predicting PTG through perceptions of parental support. Conclusion: Youth perceive their parents as reacting differently to cancer versus non-cancer distress, which is in turn predictive of their perceptions of growth. Findings suggest that parental support and reassurance/distraction are possible mechanisms facilitating resilience and growth in children with cancer.

Profiles of Resilience and Growth in Youth With Cancer and Healthy Comparisons.

OBJECTIVE: Inconsistent links between posttraumatic stress symptoms (PTS) and posttraumatic growth (PTG) in youth following a stressful life event have been observed in previous literature. Latent profile analysis (LPA) provides a novel approach to examine the heterogeneity of relations between these constructs. METHOD: Participants were 435 youth (cancer group=253; healthy comparisons = 182) and one parent. Children completed measures of PTS, PTG, and a life-events checklist. Parents reported on their own PTS and PTG. LPA was conducted to identify distinct adjustment classes. RESULTS: LPA revealed three profiles. The majority of youth (83%) fell into two resilient groups differing by levels of PTG. Several factors predicted youth's profile membership. CONCLUSIONS: PTS and PTG appear to be relatively independent constructs, and their relation is dependent on contextual factors. The majority of youth appear to be resilient, and even those who experience significant distress were able to find benefit.

Profiles of Dispositional Expectancies and Affectivity Predict Later Psychosocial Functioning in Children and Adolescents With Cancer.

OBJECTIVE: Examined how individual differences in disposition among pediatric cancer patients predict their later psychosocial functioning. METHODS: Patients aged 8-17 years (N = 223) reported on their disposition at baseline. One and three years later, self-reports and parent reports of patient psychosocial functioning were obtained. Latent profile analysis was used to identify subgroups that differed on baseline disposition and to compare them on later outcomes. ESULTS: Three groups were identified: The "Positive" group (59%) had high optimism and positive affectivity and low pessimism and negative affectivity; the "Moderate" group (39%) had a similar profile, with less exaggerated scores; a small, "Negative" group (2%) had the opposite profile (low optimism/positive affectivity; high pessimism/negative affectivity). These groups differed in psychosocial functioning at follow-up, generally in expected directions. CONCLUSIONS: Most patients have a disposition that may be protective. A small minority at high risk for maladjustment is distinguished by their disposition.

Profiles of Connectedness: Processes of Resilience and Growth in Children With Cancer.

OBJECTIVE: Identified patterns of connectedness in youth with cancer and demographically similar healthy peers. METHOD: Participants included 153 youth with a history of cancer and 101 youth without a history of serious illness (8-19 years). Children completed measures of connectedness, posttraumatic stress symptoms (PTSS), and benefit-finding. Parents also reported on children's PTSS. RESULTS: Latent profile analysis revealed four profiles: high connectedness (45%), low connectedness (6%), connectedness primarily to parents (40%), and connectedness primarily to peers (9%). These profiles did not differ by history of cancer. However, profiles differed on PTSS and benefit-finding. Children highly connected across domains displayed the lowest PTSS and highest benefit-finding, while those with the lowest connectedness had the highest PTSS, with moderate PTSS and benefit-finding for the parent and peer profiles. CONCLUSION: Children with cancer demonstrate patterns of connectedness similar to their healthy peers. Findings support connectedness as a possible mechanism facilitating resilience and growth.

Predictors of psychological functioning in children with cancer: disposition and cumulative life stressors.

OBJECTIVE: This study examined psychological functioning in children with a history of cancer and a matched sample of healthy peers, while exploring the roles of disposition and stressful life events. METHOD: Participants were 255 children with a history of cancer and 101 demographically matched children (8-17 years). Children completed measures of depression, anxiety, and posttraumatic stress symptoms (PTSS); history of stressful life events; and dispositional factors, including optimism and a five-factor personality measure. RESULTS: Children with cancer did not differ from peers with regard to depression and PTSS, but reported significantly lower anxiety. In hierarchical regressions, children's depression, anxiety, and PTSS scores were largely predicted by dispositional variables and, to a lesser extent, stressful life events, after controlling for demographics and health status. CONCLUSION: Children's psychological functioning is predicted primarily by disposition, and secondarily by history of stressful life events, with health status (i.e., cancer versus control) accounting for minimal, and often non-significant variance in children's functioning. These findings further support that children with cancer are generally resilient, with factors predictive of their adjustment difficulties mirroring those of children without history of serious illness.