Trajectories of illness uncertainty among parents of children with atypical genital appearance due to differences of sex development.

OBJECTIVE: The present study aimed to identify distinct trajectories of parental illness uncertainty among parents of children born with atypical genital appearance due to a difference of sex development over the first year following diagnosis. It was hypothesized that four trajectory classes would emerge, including "low stable," "high stable," "decreasing," and "increasing" classes, and that select demographic, familial, and medical factors would predict these classes. METHODS: Participants included 56 mothers and 43 fathers of 57 children born with moderate to severe genital atypia. Participants were recruited from eleven specialty clinics across the U.S. Growth mixture modeling (GMM) approaches, controlling for parent dyad clustering, were conducted to examine classes of parental illness uncertainty ratings over time. RESULTS: A three-class GMM was identified as the best-fitting model. The three classes were interpreted as "moderate stable" (56.8%), "low stable" (33.0%), and "declining" (10.3%). Findings suggest possible diagnostic differences across trajectories. CONCLUSIONS: Findings highlight the nature of parents' perceptions of ambiguity and uncertainty about their child's diagnosis and treatment the year following their child's birth/diagnosis. Future research is needed to better understand how these trajectories might shift over the course of the child's development. Results support the development of tailored, evidence-based interventions to address coping with uncertainty among families raising a child with chronic health needs.

Relationship Between Caregiver Uncertainty, Problem-Solving, and Psychological Adjustment in Pediatric Cancer.

OBJECTIVE: The current study examined the roles of constructive and dysfunctional problem-solving strategies in the relationships between illness uncertainty and adjustment outcomes (i.e., anxious, depressive, and posttraumatic stress symptoms) in caregivers of children newly diagnosed with cancer. METHODS: Two hundred thirty-eight caregivers of children (0-19 years of age) newly diagnosed with cancer (2-14 weeks since diagnosis) completed measures of illness uncertainty, problem-solving strategies, and symptoms of anxiety, depression, and posttraumatic stress. RESULTS: A mediation model path analysis assessed constructive and dysfunctional problem-solving strategies as mediators between illness uncertainty and caregiver anxious, depressive, and posttraumatic stress symptoms. Dysfunctional problem-solving scores partially mediated the relationships between illness uncertainty and anxious, depressive, and posttraumatic stress symptoms. Constructive problem-solving scores did not mediate these relationships. CONCLUSIONS: The current findings suggest that illness uncertainty and dysfunctional problem-solving strategies, but not constructive problem-solving strategies, may play a key role in the adjustment of caregivers of children newly diagnosed with cancer. Interventions aimed at managing illness uncertainty and mitigating the impact of dysfunctional problem-solving strategies may promote psychological adjustment.

Assessing neuropsychological phenotypes of pediatric brain tumor survivors.

INTRODUCTION: Pediatric brain tumor survivors (PBTS) are at risk for both neurocognitive impairments and psychological difficulties, yet these two domains have historically been discretely examined, with assessment of psychosocial outcomes rarely included in studies of cognitive outcomes. Taking a person-centered approach, the current study aimed to more comprehensively evaluate PBTS late effect profiles, including both neurocognitive and psychological sequelae, and predictors of these profiles. METHOD: PBTS (N = 89) were assessed in a pediatric neuropsychological clinic between May 2009 and May 2018, diagnosed at least 1 year prior, and off-treatment for at least 3 months (Mage  = 6.57 years, SD = 4.53; 46.1% female). Parent- and teacher-report of psychological symptoms, and performance-based measures of neurocognitive functioning were examined using latent profile analysis. The R3STEP procedure identified predictors of class membership. RESULTS: The optimal model identified four classes characterized by: (1) average functioning across all measures ("Average," n = 47), (2) average psychosocial functioning and impaired neurocognitive functioning ("Cognitive Deficit," n = 25), (3) elevated social problems and significant neurocognitive impairments ("Social/Cognitive Deficit," n = 9), and (4) impaired visual planning and problem-solving and elevated parent-reported psychosocial problems, but average processing speed, working memory, and teacher-reported psychosocial outcomes ("Discrepant," n = 8). Ethnicity, race, radiation treatment, and diagnoses of neurofibromatosis 1, hydrocephalus, and cerebellar mutism syndrome were significant predictors of class membership (ps < 0.05). CONCLUSION: The present study identified distinct phenotypes with unique patterns of relations among neurocognitive and psychological domains. These findings are a vital first step toward identifying those at highest risk for poor outcomes and informing interventions that effectively address interrelated treatment targets for specific groups.

Psychological adjustment outcomes among pediatric brain tumor survivors: A meta-analysis.

BACKGROUND: Pediatric brain tumor survivors (PBTS) are at significant risk for psychological adjustment difficulties, including greater depressive and anxious symptomology. Systematic reviews have identified this heightened risk among youth with medical conditions, but these reviews have not been specific to PBTS. Therefore, the current study aimed to directly examine the psychological adjustment of PBTS as compared to healthy peers. PROCEDURE: A systematic review and meta-analysis was conducted using PubMed, PsychInfo, and Academic Search Premier databases. The search yielded 2833 articles, with 22 articles meeting inclusion criteria. RESULTS: A statistically significant overall medium effect size (Hedge's g = 0.32) indicated that PBTS exhibited poorer overall psychological adjustment relative to healthy comparison groups. Studies that included younger children were associated with larger between-group differences. When evaluating specific outcomes, PBTS had relatively higher levels of depressive symptoms (Hedge's g = 0.36), anxious symptoms (Hedge's g = 0.11), and general distress (Hedge's g = 0.22), but not more externalizing problems. CONCLUSIONS: The present study confirmed that PBTS are indeed at greater risk for psychological adjustment difficulties relative to healthy comparison groups. These findings highlight the importance of psychosocial screening among this population. Given that depressive symptoms were the most elevated relative to healthy peers, investigation of such symptomatology among PBTS is particularly important.

The Relationship Between Parent Distress and Child Quality of Life in Pediatric Cancer: A Meta-Analysis.

PROBLEM: Pediatric cancer places both parents and children at risk for psychosocial difficulties, including a specific risk for diminished quality of life. Previous research has identified relationships between parent and child psychosocial adjustment outcomes (e.g., depression, anxiety), yet the relationships between parent adjustment and child quality of life have yet to be comprehensively evaluated via meta-analysis. ELIGIBILITY CRITERIA: A systematic review and meta-analysis were conducted using EBSCO, with PsychINFO, MEDLINE, Academic Search Premiere, and Health Source: Nursing/Academic Edition. SAMPLE: Fourteen studies met inclusion criteria. RESULTS: Fourteen correlations from 1646 parents of children with cancer were evaluated, resulting in a medium-magnitude correlation between parent psychosocial adjustment and child quality of life (r = 0.23, p < .001). Additional analyses evaluating the relationship between parent psychosocial adjustment and child social/emotional quality of life resulted in a medium-magnitude correlation (r = 0.24, p < .001). CONCLUSIONS: A significant relationship exists between parent psychosocial adjustment and child quality of life. However, this relationship appears slightly less strong than those found in meta-analyses evaluating other child psychosocial adjustment outcomes. IMPLICATIONS: Parent distress is an important factor to evaluate in the context of pediatric cancer, as it appears to have implications for child quality of life, in addition to other child psychosocial adjustment outcomes.

Barriers to care in pediatric cancer: The role of illness uncertainty in relation to parent psychological distress.

OBJECTIVE: The current study evaluated perceived barriers to care for parents of children with cancer and the mediating effect of illness uncertainty (IU; uncertainty from the ambiguity or unpredictability of the illness) on the relationship between barriers and parental psychological distress. We hypothesized that greater barriers to care would be related to higher levels of IU and, in turn, higher anxiety, depression, and posttraumatic stress symptom (PTSS) ratings. METHODS: As part of an ongoing study of family adjustment to pediatric cancer, 145 caregivers of children diagnosed with cancer completed questionnaires assessing barriers to care, parent IU, and anxious symptoms, depressive symptoms, and PTSS. Time since cancer diagnosis ranged from 1 to 12 months. RESULTS: Three mediation models assessed IU as a mediator between barriers to care and anxious symptoms, depressive symptoms, and PTSS, controlling for annual income. IU significantly mediated the relationship between barriers to care and depressive symptoms (B = -.03, SE = .02; 95% CI [-.08, -.01]) and to PTSS (B = -.15, SE = .10; 95% CI [-.38, -.03]). The mediation model was not significant for anxious symptoms. CONCLUSION: Experiencing barriers to obtaining treatment for their child with cancer is a significant risk factor for symptoms of depression and PTSS among parents. Specifically, greater barriers to care is significantly associated with IU, a well-established precursor to distress in this population. Interventions targeting IU may help ameliorate distress within the context of unmodifiable barriers to care.

Featured Article: The Relationship Between Parent and Child Distress in Pediatric Cancer: A Meta-Analysis.

OBJECTIVE: Parents and children affected by pediatric cancer are at risk for psychological distress, including depression, anxiety, and post-traumatic stress. A link is believed to exist between parent and child distress; however, no systematic analysis of this relationship has occurred. A meta-analysis was conducted to assess the relationship between parent and child distress among families affected by pediatric cancer. METHODS: A systematic review and meta-analysis was conducted using EBSCO (searching PsycINFO, MEDLINE, Academic search Premiere, and Health Source: Nursing/Academic Edition) and PubMed. The initial search yielded a total of 29,118 articles. Inclusion criteria were that studies assessed the relation between parent and child distress in the context of pediatric cancer, were written in English, and were published in peer-reviewed journals. 28 articles met inclusion criteria. RESULTS: A statistically significant association was found between overall parent and child distress (r = .32, p < .001), such that increased parent-reported distress was associated with increased distress in their children. Significant relationships were also present among each type of parental distress (i.e., depression, anxiety, post-traumatic stress, and global distress; rs = .31-.51, ps < .001) and overall child distress. Moderation analyses via meta-regression indicated that parent proxy-report of child symptoms was associated with a stronger relationship between parent and child distress than child self-report of their own distress. CONCLUSIONS: Aligned with the social-ecological framework, familial factors appear to be highly relevant in understanding distress following pediatric cancer diagnosis. Indeed, greater parent distress was associated with greater child distress.

Post traumatic stress symptoms in parents of children with cancer: A mediation model.

OBJECTIVE: Caregivers of pediatric cancer patients are at risk for posttraumatic stress symptoms (PTSS). Previous literature has identified caregiver illness uncertainty as a predictor of PTSS, yet little is known about the mechanism by which illness uncertainty may affect PTSS. Rumination, or perseverations about the cause and consequences of an event, has been related to posttraumtic stress disorder in other populations. However, limited research of this relationship exists for pediatric cancer caregivers. Further, no studies have evaluated rumination in relation to illness uncertainty. The current study examined rumination in relation to illness uncertainty and PTSS in caregivers with children actively receiving treatment for cancer. It was hypothesized that rumination would be related to illness uncertainty and would mediate the relationship between illness uncertainty and PTSS. METHODS: Caregivers (N = 59) completed the Parent Perception of Uncertainty Scale, Ruminative Responses Scale, and the Impact of Event Scale-Revised. RESULTS: illness uncertainty was identified as a significant predictor of rumination (B = 0.148, p = .015), and rumination was a significant predictor of PTSS (B = 1.83, p < .001). Biased-corrected bootstrap regression analysis revealed that rumination mediated the relationship between illness uncertainty and PTSS (R2 = 0.53, p < .001). CONCLUSIONS: Rumination was identified as a mediator between the relationship of illness uncertainty and PTSS. These findings underscore the importance of rumination in caregivers of children with cancer, as a potential construct for identifying caregivers at risk of PTSS, and as a possible mechanism for targeted intervention.

Parent illness appraisals, parent adjustment, and parent-reported child quality of life in pediatric cancer.

Psychosocial distress is a salient construct experienced by families of children with newly diagnosed cancer, but little is known about parental appraisal of the child's illness and the subsequent impact this may have on child and parent functioning. The goal of the present study was to examine the interrelationships among multiple parent illness appraisals, parent adjustment outcomes, and parent-reported child quality of life in parents of children diagnosed with cancer. Parents completed measures of illness appraisal (illness uncertainty and attitude toward illness), parent adjustment (general distress, posttraumatic stress, parenting stress), and child quality of life (general and cancer-related). Path analysis revealed direct effects for parent illness uncertainty and illness attitudes on all 3 measures of parent adjustment. Illness uncertainty, but not illness attitudes, demonstrated a direct effect on parent-reported child general quality of life; parenting stress had direct effects on general and cancer-related quality of life. Exploratory analyses indicated that parent illness uncertainty and illness attitudes conferred indirect effects on parent-reported general and cancer-related quality of life through parenting stress. Negative parent illness appraisals appear to have adverse impacts on parents' psychosocial functioning and have implications for the well-being of their child with cancer.

Illness Uncertainty, Global Psychological Distress, and Posttraumatic Stress in Pediatric Cancer: A Preliminary Examination Using a Path Analysis Approach.

OBJECTIVE: To investigate the relationship of illness uncertainty (IU) to global psychological distress (GPD) and posttraumatic stress symptomatology (PTSS) using a path analysis approach. METHODS: Participants were 105 caregivers (MAge = 36.9 years, standard deviation [SD] = 8.7) of children (MAge = 8.6 years, SD = 5.0) with newly diagnosed cancer. A path analysis model examined the indirect and direct effects of each IU subscale on PTSS through GPD. RESULTS: The final model accounted for 47.30% of the variance in PTSS, and the ambiguity facet of IU had a significant indirect effect on PTSS through GPD. Lack of clarity and unpredictability were not significant predictors. CONCLUSIONS: Ambiguity experienced by parents may be salient in the development of PTSS. Future research should examine these relationships longitudinally in larger samples to better understand adjustment in parents of children with cancer.

The relationship between single-parent status and parenting capacities in mothers of youth with chronic health conditions: the mediating role of income.

OBJECTIVE: To retrospectively examine the relationship of single-parent status to parenting capacity variables in mothers of youth with a chronic health condition. METHODS: Parental overprotection, perceived vulnerability, and parenting stress were assessed in 383 mothers (308 married and 75 single parents) of youth with one of six chronic health conditions (i.e., type 1 diabetes, asthma, cancer, cystic fibrosis, hemophilia, or sickle cell disease). RESULTS: Single mothers evidenced higher levels of both perceived vulnerability and parenting stress, but not overprotection, than married parents. These differences disappeared in the presence of income as a predictor. CONCLUSIONS: Single parents appear to evidence differences in parenting capacity; however, low income appears to account in large part for the higher level of risk associated with single-parent status.

Parental overprotection, perceived child vulnerability, and parenting stress: a cross-illness comparison.

The current study sought to investigate differences in parenting capacity variables across four disease groups. Parents (N = 425), the majority of whom were mothers, of children with either cancer, asthma, Type 1 diabetes, or cystic fibrosis, completed measures of parental overprotection, perceived child vulnerability, and parenting stress. After controlling for significant demographic variables, parents of children with cystic fibrosis and asthma reported higher perceived child vulnerability than parents of children with either diabetes or cancer, while parents of children with asthma and diabetes reported higher parenting stress than parents of children with cancer or cystic fibrosis. No differences between disease groups were found for parental overprotection. The current study provides support for an illness-specific approach to understanding parenting capacity variables in the context of childhood chronic illnesses.

The relationship of parental overprotection, perceived vulnerability, and parenting stress to behavioral, emotional, and social adjustment in children with cancer.

BACKGROUND: To examine the relationship of self-reported parental overprotection, perceived child vulnerability, and parenting stress to parent-reported behavioral, emotional, and social adjustment of children currently on treatment for cancer. PROCEDURE: Parents of 62 children (34 boys, 28 girls) currently on treatment for cancer were recruited from an outpatient pediatric cancer clinic. Children ranged in age from 2 to 12 years; age at diagnosis ranged from 1.33 to 11.83 years. RESULTS: Higher levels of parenting stress, but not parental overprotection or perceived child vulnerability, were associated with poorer behavioral and social adjustment. Higher levels of perceived child vulnerability and parenting stress, but not parental overprotection, were independently associated with poorer emotional adjustment. CONCLUSIONS: Specific parenting variables appear to be related to specific adjustment outcomes in children with cancer. Longitudinal follow-up of these children is necessary to determine the developmental trajectory of parent variables and long-term child outcomes.