A randomized clinical trial to support adherence regimens in children with epilepsy: Examining potential mechanisms of change.

OBJECTIVE: A family-tailored education and problem-solving intervention, Supporting Treatment Adherence Regimens (STAR), was developed to address the adherence challenges common in youth with epilepsy and their families. Randomized clinical trial (RCT) results indicated a 21% adherence improvement in the STAR group compared with an education-only (EO) group 12-months post-intervention. The current study examined group differences (STAR vs. EO) in epilepsy-specific knowledge, barriers to medication adherence, problem-solving skills, caregiver emotional distress, and family functioning over time and whether these factors mediated group differences in adherence at 12-months post-intervention. METHODS: Two-hundred children (ages 2-12) with epilepsy and their caregivers were included as RCT participants. Children with new-onset epilepsy and adherence <95% were randomized to receive either the STAR (n = 27) or EO (n = 29) intervention. Caregivers completed questionnaires assessing outcomes of interest at baseline, midpoint of the intervention, post-intervention, and 3-, 6-, and 12-month follow-ups. Regression-based analyses of covariance and longitudinal mixed effect linear models were conducted. RESULTS: Results generally revealed no significant group differences across outcomes of interest at post-intervention or over time. However, one significant model did emerge for social problem-solving skills (b = -1.74, p = 0.04), such that these scores were initially higher in the STAR group compared to the EO group, then decreased slightly in the STAR group over time while remaining stable in the EO group. None of these factors mediated group differences in adherence at 12-months post-intervention. CONCLUSION: Future research should examine other potential mechanisms of treatment change after adherence interventions, such as STAR. Nonsignificant findings can inform the development of future study designs and intervention efforts.

Caregiver Expressed Emotion in Families of Youth With Spina Bifida: Demographic, Medical, and Family Correlates.

OBJECTIVE: Caregiver expressed emotion (EE), an interview-based measure of emotional valence within an interpersonal relationship, is associated with psychosocial outcomes across multiple conditions. Guided by a model implicating a bidirectional role of "Chronic Family Stress" in the unfolding of EE in family environments, the current study examined demographic, medical, and family-level variables in association with EE in caregivers of children with spina bifida (SB). METHODS: Data were combined from 2 distinct studies of families with a child with SB, resulting in a sample of 174 (ages 8-17). Linear regressions examined the family stressors and child variables in association with maternal and paternal warmth and criticism, as coded from EE interviews. RESULTS: Higher levels of family stress were associated with paternal criticism (p = .03), while having non-Hispanic White children was associated with both maternal and paternal criticism (ps < .005). Having children younger in age (ps < .01) and without a shunt (ps < .01) was associated with higher warmth. CONCLUSIONS: Family stressors, absence of the negative impacts of systemic racism, shunt status, and age appear to be associated with the expression of EE in caregivers of a child with SB. Findings highlight multiple assessment considerations, including assessing EE when children are younger to engage caregivers with children with SB when they are more likely to be expressing more warmth. Pinpointing factors associated with caregiver EE in SB will help to better identify families at risk for high levels of criticism and also aid in the development of targeted prevention and intervention programs.

Trajectories of Marital Satisfaction among Parents of Youth with Spina Bifida.

OBJECTIVE: This study examined marital satisfaction among parents of youth with spina bifida (SB) over an 8-year period and investigated the usefulness of the double ABCX model for understanding factors that predict change in marital satisfaction across child age. METHODS: Data from five time points of a longitudinal investigation of psychosocial outcomes in youth with SB were included. Mothers and fathers of children with SB (aged 8-17) reported on marital satisfaction and components of the double ABCX model. Change in marital satisfaction was examined across child age with components of the double ABCX model, as well as interactions between components, as predictors. RESULTS: Marital satisfaction was significantly higher in the present sample than in a normative sample of married couples. Although there were no significant changes in marital satisfaction for either parent as a function of child age, there was significant variability for the intercept and slope of maternal and paternal marital satisfaction within the sample. Family support predicted a higher intercept, and mental health symptoms predicted a lower intercept, for maternal and paternal marital satisfaction. More stressors and SB-related family stress predicted a lower intercept for paternal marital satisfaction. Family support and family stress attributed to SB moderated the relationship between child vulnerability and maternal marital satisfaction. Observed family cohesion and child psychosocial quality of life moderated the relationship between family stressors and paternal marital satisfaction. CONCLUSION: Findings demonstrate the usefulness of the double ABCX model for this population.

CNS-Directed Cancer Treatment and Child Adjustment: Moderating Effects of Maternal Parenting.

OBJECTIVE: The aim of this study was to examine whether maternal parenting behaviors (i.e., warmth, behavioral/psychological control) moderate the association between central nervous system (CNS)-directed treatment and adjustment among pediatric cancer survivors at 3 years post-diagnosis or relapse. METHODS: Three years after their child's cancer diagnosis or relapse, mothers (N = 84) reported on their child's academic and social competence, as well as their internalizing and externalizing problems. Children (N = 84; Mage = 13.21 years, 52.4% male) reported on maternal parenting behaviors. Using medical chart data, children were separated into CNS (i.e., received cranial radiation, intrathecal chemotherapy, and/or neurosurgery; N = 45) or non-CNS-directed treatment (N = 39) groups. Twelve moderation models were tested when examining two-way interactions between CNS treatment group and maternal parenting behaviors. RESULTS: Children in the CNS-directed treatment group demonstrated significantly worse academic and social competence. Moderation analyses revealed four significant two-way interactions between CNS treatment group and maternal parenting behaviors when predicting children's adjustment. High levels of maternal behavioral control buffered the negative impact of CNS-directed treatment on children's social competence. In addition, maternal warmth had a contrasting effect, as CNS-directed treatment was associated with worse academic competence at high levels of warmth. Analyses with psychological control revealed that low levels of this parenting style were not protective against internalizing or externalizing problems among those with CNS-directed treatment. CONCLUSIONS: Children who receive CNS-directed treatment may benefit from a different pattern of parenting during early cancer survivorship. Findings highlight the importance of considering the broader family context when conceptualizing the impact of illness-related factors on adjustment among pediatric cancer survivors.

Parents' school-related concerns and perceived strengths in youth with spina bifida.

BACKGROUND: Although the academic difficulties of children with spina bifida (SB) are well-documented, there is limited literature on parents' views of their children's school experiences and school-related supportive services. Thus, the current study examined parents' school-related concerns, as well as perceived areas of strength, among children with SB. METHODS: Using a mixed-methods approach, 30 families (29 mothers and 19 fathers) of children with SB (ages 8-15 years) completed questionnaires and interviews. Content analysis was used to generate themes from interview data about parents' school-related concerns and perceptions of their child's strengths. RESULTS: Overall, six themes emerged when assessing both parents' concerns and perceived strengths. Some parents did not endorse school concerns or strengths for their child. However, other parents described concerns related to academic performance, cognitive abilities, lack of school support, missed school and/or class time and disengagement, as well as strengths such as academic skills, cognitive abilities, persistence, self-advocacy and agreeableness. Despite parents' concerns about their children's academic performance, quantitative data revealed that less than 50% of children had received a neuropsychological evaluation and/or academic accommodations; additional quantitative data supported the qualitative findings. CONCLUSIONS: The mixed-methods approach used in this study provides a richer understanding of parents' experiences in the school setting when they have a child with SB. Results can inform clinical practice, identifying a need to improve academic support for children with SB and help parents manage education-related stressors.

Recognition of Emotions from Situational Contexts and the Impact of a Mind Reading Intervention in Children with Autism Spectrum Disorder.

The present research examined recognition of basic (happy, fear, sad) and self-conscious (pride, embarrassment, guilt) emotions from situational contexts in children with Autism Spectrum Disorder (ASD) and neurotypical children (Study 1). Results showed that children with ASD were less accurate in recognizing fear, embarrassment, and guilt situations than neurotypical children. Additionally, the research explored whether recognition of these emotions from situational contexts could be improved in children with ASD after a 4-week computerized emotion intervention (Study 2). Following the intervention, children showed better recognition of embarrassment and guilt, but no improvement in recognizing fear. In children with ASD, significant negative relations were found between ASD symptomatology and recognition of guilt (Study 1), although ASD symptomatology did not impact the intervention's efficacy (Study 2). Additional explanations for these findings are provided.

Impact of central nervous system-directed treatment on competence and adjustment among children in early cancer survivorship.

BACKGROUND: Central nervous system (CNS)-directed treatments can cause long-term academic, social, and emotional difficulties for children with cancer. However, limited research has examined the emergence of problems longitudinally and has often stratified risk by diagnosis alone. Therefore, this study compared competence and adjustment in children, who did and did not receive CNS-directed treatment, over the first 3 years following a cancer diagnosis. PROCEDURE: Mothers, fathers, and children (ages 5-18 years at diagnosis) from 217 families reported on the child's competence (academic, social) and adjustment (anxious/depressed, withdrawn/depressed) near a new cancer diagnosis or relapse and 3 years later. Children were categorized into CNS-directed treatment (n = 112; including cranial radiation, intrathecal chemotherapy, and/or neurosurgery) and non-CNS-directed treatment (n = 105) groups. RESULTS: At enrollment, there were few differences in competence and emotional adjustment among children based on treatment or diagnostic group. At 3 years, mothers and fathers reported poorer social competence for the CNS-directed treatment group, and fathers reported poorer school competence for the CNS-directed treatment group. Over time, father ratings of social competence increased for the non-CNS-directed treatment group, but not the CNS-directed treatment group. While father ratings of academic competence declined for the CNS-directed treatment group, mother ratings declined the most for children diagnosed with a brain tumor. All children demonstrated higher anxious/depressed scores over time. CONCLUSIONS: CNS-directed treatment may be a valuable indicator to identify childhood cancer survivors at risk for poor competence during early survivorship. Follow-up screening and supportive services are recommended, as well as additional longitudinal research.

Social Skills and Medical Responsibility Across Development in Youth With Spina Bifida.

OBJECTIVE: To examine the predictive role of social skills in youth with spina bifida (SB) on growth in medical responsibility across development. METHODS: As part of a larger, longitudinal study, 140 youth with SB were assessed across four time points (ages 8-22 across time points). Mixed-effects models were investigated for change with: (a) no predictors (i.e., change in medical responsibility across age; time was examined using the participant's age, centered at 11.5 years); (b) social variables (i.e., observed social behaviors, parent- and teacher-reported social skills) as predictors; and (c) social variables as predictors with intelligence quotient, lesion level, and sex as covariates. RESULTS: Significant growth with age was identified for medical responsibility (p < .0001). Observed, parent-reported, and teacher-reported social skills did not significantly predict this growth; however, all three predicted the intercept for medical responsibility at 11.5 years of age (ps ≤ .047). Parent-reported social skills remained a significant predictor of the intercept at 11.5 years of age when including the covariates (p = .008). CONCLUSIONS: Children with SB who exhibited more positive social skills were more likely to a have higher level of medical responsibility in late childhood, but higher levels of social skills were not associated with a more rapid increase in responsibility over time. Identifying existing social strengths and promoting the practice of prosocial skills may have additional benefits to children with SB, including their acquisition of medical responsibility.

A Systematic Review of Benefit-Finding and Growth in Pediatric Medical Populations.

OBJECTIVE: This review synthesizes the literature on benefit-finding and growth (BFG) among youth with medical illnesses and disabilities and their parents. Specifically, we summarized: (a) methods for assessing BFG; (b) personal characteristics, personal, and environmental resources, as well as positive outcomes, associated with BFG; (c) interventions that have enhanced BFG; and (d) the quality of the literature. METHODS: A medical research librarian conducted the search across PubMed, Scopus, PsycInfo, Google Scholar, and Cochrane Library. Studies on BFG among children ages 0-18 with chronic illnesses and disabilities, or the parents of these youth were eligible for inclusion. Articles were uploaded into Covidence; all articles were screened by two reviewers, who then extracted data (e.g., study characteristics and findings related to BFG) independently and in duplicate for each eligible study. The review was based on a systematic narrative synthesis framework and adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines (PROSPERO registration number: CRD42020189339). RESULTS: In total, 110 articles were included in this review. Generally, BFG capabilities were present across a range of pediatric health conditions and disabilities. Correlates of both youth and parent BFG are presented, including personal and environmental resources, coping resources, and positive outcomes. In addition, studies describing interventions aimed at enhancing BFG are discussed, and a quality assessment of the included studies is provided. CONCLUSIONS: Recommendations are provided regarding how to assess BFG and with whom to study BFG to diversify and extend our current literature.

Development of an Observational Parental Scaffolding Measure for Youth with Spina Bifida.

OBJECTIVE: To examine the reliability and validity of a new observational measure of parental scaffolding, as well as the impact of parental scaffolding on academic and social outcomes among youth with spina bifida (SB). METHODS: As part of a larger study, 137 families of youth with SB participated in family interaction tasks and self-report questionnaires at the baseline assessment. Teachers also reported on youth's academic independence and competence, as well as social skills. Guided by previous research and theoretical formulations, a rational approach to measure development was employed whereby maternal and paternal scaffolding composites were created using the Family Interaction Macro-coding System (Holmbeck, Zebracki, Johnson, Belvedere, & Hommeyer (2007). Parent-child interaction macro-coding manual. Unpublished coding system. Chicago: Loyola University Chicago). RESULTS: The scaffolding measure demonstrated acceptable interrater and scale reliabilities. Additionally, both the maternal and paternal scaffolding composites were significantly associated with scores from self-report questionnaires of parenting behaviors in the expected directions. Maternal scaffolding was positively associated with IQ, academic competence, academic independence, and social self-control in youth with SB, whereas paternal scaffolding was positively associated with social cooperation and social self-control. Differences in scaffolding emerged between mothers and fathers, as well as across demographic variables. CONCLUSION: Initial findings support the use of the scaffolding measure. Future research should continue to examine the utility of this scaffolding measure in families of youth with SB.

Longitudinal Associations Between Pain and Psychosocial Adjustment in Youth With Spina Bifida.

OBJECTIVE: This study examined: (a) the nature and prevalence of pain in youth with spina bifida (SB) (b) common coping responses to pain, and (c) longitudinal, bi-directional associations between internalizing symptoms and pain characteristics. METHODS: Data were collected from youth (N = 140, 53.6% female, ages 8-15 at Time 1) and their parents and teachers at two time points spaced 2 years apart. Youth reported on several pain characteristics and coping responses. Multiple informants reported on child internalizing symptoms. Evaluation of Aims 1-3 was based on descriptive analyses, bivariate correlations, and linear and logistic regressions. RESULTS: About 25% of the sample reported chronic pain (e.g., experiencing pain one or more times per week over the past 3 months) at Time 1 or 2, with roughly one-third of this chronic pain subsample reporting chronic pain both time points. Pain was usually rated as mild in intensity for the full sample and most commonly experienced in the head, abdomen, and back, and described as "aching." Youth with chronic pain reported significantly higher pain intensity and tended to use condition-specific methods to cope with pain (e.g., taking off braces). In 2 of 10 analyses, internalizing symptoms at Time 1 were associated with chronic pain and pain intensity at Time 2. CONCLUSIONS: Roughly one-fourth of youth with SB are at risk for experiencing chronic pain, highlighting the need for increased assessment and treatment of pain in this population. Youth psychological functioning appears to more often precede, rather than being a consequence of pain symptoms.

Healthcare Satisfaction and Unmet Needs Among Bereaved Parents in the NICU.

BACKGROUND: Learning directly from bereaved parents about their experiences in the neonatal intensive care unit (NICU) can improve services at end-of-life (EOL) care. Parents who perceive that their infant suffered may report less satisfaction with care and may be at greater risk for distress after the death. Despite calls to improve EOL care for children, limited research has examined the EOL experiences of families in the NICU. PURPOSE: We examined parent perceptions of their infant's EOL experience (eg, symptom burden and suffering) and satisfaction with care in the NICU. METHODS/SEARCH STRATEGY: Forty-two mothers and 27 fathers (representing 42 infants) participated in a mixed-methods study between 3 months and 5 years after their infant's death (mean = 39.45 months, SD = 17.19). Parents reported on healthcare satisfaction, unmet needs, and infant symptoms and suffering in the final week of life. FINDINGS/RESULTS: Parents reported high levels of healthcare satisfaction, with relative strengths in providers' technical skills and inclusion of the family. Greater perceived infant suffering was associated with lower healthcare satisfaction and fewer well-met needs at EOL. Parents' understanding of their infant's condition, emotional support, communication, symptom management, and bereavement care were identified as areas for improvement. IMPLICATIONS FOR PRACTICE: Parents value comprehensive, family-centered care in the NICU. Additionally, monitoring and alleviating infant symptoms contribute to greater parental satisfaction with care. Improving staff knowledge about EOL care and developing structured bereavement follow-up programs may enhance healthcare satisfaction and family outcomes. IMPLICATIONS FOR RESEARCH: Prospective studies are needed to better understand parental perceptions of EOL care and the influence on later parental adjustment.

The perceived impact of infertility on romantic relationships and singlehood among adult survivors of childhood cancer.

OBJECTIVE: To examine whether adult survivors of childhood cancer perceive a direct impact of potential/confirmed infertility on their romantic relationships/singlehood. METHODS: Open-ended qualitative phone interviews were conducted with 57 adult survivors of childhood cancer and analyzed through thematic content analysis until saturation was reached (N = 30). RESULTS: Interviews revealed three major themes: (1) impact on survivors, (2) impact on partners/romantic relationships, and (3) alternative routes to parenthood. An overarching theme related to (4) timing also emerged. In describing the impact on themselves, survivors shared subthemes of (1.1) becoming aware of infertility as potential late effect of childhood cancer treatment and (1.2) their emotional reactions (ie, worries/concerns, distress, guilt, no emotional reaction). The impact on partners/romantic relationships also included subthemes: (2.1) partner communication, (2.2) partner reactions, and (2.3) the journey of active family planning. CONCLUSIONS: The perceived impact of potential/confirmed infertility on romantic relationships of adult survivors of childhood cancer varied across individuals and time. Its presence or absence depends on life circumstances (eg, marital status, life goals), and if present, negative effects were typically resolved over time by having a pregnancy. Other survivors found joy and comfort in step-children, considering adoption, or embracing a life without children. While more research is needed, findings indicate that discussions about infertility and fertility testing should be tailored to individual survivors and their needs, which may change over time. Timely referrals to reproductive specialists or adoption agencies are recommended for those who want children and have difficulties conceiving.

A Systematic Review of Behavioral Intervention Technologies for Youth With Chronic Health Conditions and Physical and Intellectual Disabilities: Implications for Adolescents and Young Adults With Spina Bifida.

OBJECTIVE: Behavioral intervention technologies (BITs) stand as a promising delivery mechanism that overcomes multiple condition-specific and access barriers for self-management interventions for adolescents and young adults with spina bifida (AYA-SB). The purpose of the current review was to synthesize the behavioral and self-management intervention literature in conditions that have overlapping symptoms with youth with SB and to develop a model of likely user needs for AYA-SB that promotes self-management. METHOD: The search strategy was conducted by a medical research librarian in the following databases: MEDLINE (Ovid), EMBASE (Elsevier), PsycINFO (EbscoHost), the Cochrane Library (Wiley), and Web of Science (Thomson Reuters) databases. The review was based on a systematic narrative synthesis framework and adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines (registration number CRD42018092342). RESULTS: In total, 18 articles were included in the current BIT review. The majority of included studies (1) targeted the management of chronic health conditions, (2) were informed by evidence-based approaches, (3) relied on content delivery, (4) were Web-based, (5) used linear or user-driven workflows, (6) included professional human support, and (7) included a control condition. CONCLUSIONS: Many of the evaluated BITs resulted in acceptable usage and maintained or improved targeted symptoms. A user needs model for AYA-SB is proposed with the intention that future research will promote further refinement and ultimate deployment of a BIT for AYA-SB to promote self-management.

Maternal Communication in Childhood Cancer: Factor Analysis and Relation to Maternal Distress.

Objective: This study aimed to characterize mothers' communication with their children in a sample of families with a new or newly relapsed pediatric cancer diagnosis, first using factor analysis and second using structural equation modeling to examine relations between self-reported maternal distress (anxiety, depression, and posttraumatic stress) and maternal communication in prospective analyses. A hierarchical model of communication was proposed, based on a theoretical framework of warmth and control. Methods: The sample included 115 children (age 5-17 years) with new or newly relapsed cancer (41% leukemia, 18% lymphoma, 6% brain tumor, and 35% other) and their mothers. Mothers reported distress (Beck Anxiety Inventory, Beck Depression Inventory-II, and Impact of Events Scale-Revised) 2 months after diagnosis (Time 1). Three months later (Time 2), mother-child dyads were video-recorded discussing cancer. Maternal communication was coded with the Iowa Family Interaction Ratings Scales. Results: Confirmatory factor analysis demonstrated poor fit. Exploratory factor analysis suggested a six-factor model (root mean square error of approximation = .04) with one factor reflecting Positive Communication, four factors reflecting Negative Communication (Hostile/Intrusive, Lecturing, Withdrawn, and Inconsistent), and one factor reflecting Expression of Negative Affect. Maternal distress symptoms at Time 1 were all significantly, negatively related to Positive Communication and differentially related to Negative Communication factors at Time 2. Maternal posttraumatic stress and depressive symptoms each predicted Expression of Negative Affect. Conclusions: Findings provide a nuanced understanding of maternal communication in pediatric cancer and identify prospective pathways of risk between maternal distress and communication that can be targeted in intervention.

The emotional impact of errors or adverse events on healthcare providers in the NICU: The protective role of coworker support.

AIMS: To examine the impact of errors or adverse events on emotional distress and professional quality of life in healthcare providers in the neonatal intensive care unit, and the moderating role of coworker support. BACKGROUND: Errors or adverse events can result in negative outcomes for healthcare providers. However, the role of coworker support in improving emotional and professional outcomes has not been examined. DESIGN: A cross-sectional online survey from a quality improvement initiative to train peer supporters in a neonatal intensive care unit. METHODS: During 2015, 463 healthcare providers in a neonatal intensive care unit completed a survey assessing their experiences with an error or adverse event, anxiety, depression, professional quality of life and coworker support. RESULTS: Compared with those who did not experience an error or adverse event (58%), healthcare providers who observed (23%) or were involved (19%) in an incident reported higher levels of anxiety and secondary traumatic stress. Those who were involved in an event reported higher levels of depression and burnout. Differences between the three groups (no event, observation and involvement) for compassion satisfaction were non-significant. Perceived coworker support moderated the association between experiencing an event and both anxiety and depression. Specifically, experiencing an event was associated with higher levels of anxiety and depression when coworkers were perceived as low in supportiveness, but not when they were viewed as highly supportive. CONCLUSION: Findings suggest that errors or adverse events can have a harmful impact on healthcare providers and that coworker support may reduce emotional distress.

Psychosexual development and satisfaction in long-term survivors of childhood cancer: Neurotoxic treatment intensity as a risk indicator.

BACKGROUND: Risk factors for impairment in psychosexual development and satisfaction among adult survivors of childhood cancer are poorly understood. The authors compared psychosexual outcomes between survivors and healthy controls, and tested whether at-risk survivors can be identified by 1) treatment neurotoxicity or 2) diagnosis. METHODS: A total of 144 young adult survivors of childhood cancer and 144 matched controls completed questionnaires regarding psychosexual development, sexual satisfaction, and satisfaction with relationship status. Survivors were aged 20 to 40 years and were 5 to 34 years after diagnosis. Using medical chart data, survivors were divided into non-neurotoxic (48 survivors), low-dose (36 survivors), and high-dose (58 survivors) neurotoxic treatment groups. RESULTS: Apart from having fewer lifetime sex partners, survivors did not appear to differ from controls. However, survivors of brain tumors and any survivor who received high-dose neurotoxic treatment reported the lowest rates of achieving milestones of psychosexual development, whereas sexual and relationship status satisfaction were found to be related to relationship status. Neurotoxic treatment intensity further distinguished between survivors of brain tumors with and without psychosexual impairment. CONCLUSIONS: The intensity of neurotoxic treatment may be a valuable indicator of risk for psychosexual impairment relative to diagnosis alone. Health care providers should assess romantic/sexual problems among survivors at risk and make referrals if needed. Cancer 2017;123:1869-1876. © 2017 American Cancer Society.

Family estimates of risk for neurocognitive late effects following pediatric cancer: From diagnosis through the first three years of survivorship.

BACKGROUND: Families often express a need for additional information about neurocognitive late effects (NCLE) after a pediatric cancer diagnosis. Therefore, we examined: (i) differences in parent, child, and oncologist estimates of risk for NCLE; (ii) whether the estimates of parents and/or children change over time; and (iii) whether estimates are different for children treated with central nervous system (CNS) directed therapies. PROCEDURE: Mothers, fathers, and children (initial age: 5-17, self-report: >10) from 258 families reported their perceived likelihood of the child developing "thinking/learning problems" on a visual analog scale (0-100%) at 2 months (T1), 1 year (T2), and 3 years (T3) following cancer diagnosis/relapse. Oncologists estimated the likelihood of NCLE at T1. Children were separated into groups based on CNS-directed treatment (n = 137; neurosurgery, intrathecal chemotherapy, and/or craniospinal radiation) or no CNS treatment. RESULTS: Mother, father, and child estimates of risk for NCLE were similar to oncologists and to one another around diagnosis (T1). Although there were no significant mean differences, a considerable subset of family members either underestimated their child's risk for NCLE (>40%) or overestimated the risk for NCLE (20%) in comparison to oncologists. At T2 and T3, the estimates of mothers were significantly higher than children. Linear growth curves indicated that mothers' estimates for children with CNS-directed treatment significantly increased throughout the first 3 years of survivorship. CONCLUSIONS: Considering that accurate understanding of NCLE is essential to seeking appropriate assessment and intervention, healthcare providers should focus on implementing family-based education early in treatment and throughout survivorship care.

Parent-Child Communication and Adjustment Among Children With Advanced and Non-Advanced Cancer in the First Year Following Diagnosis or Relapse.

Objectives: To examine parent-child communication (i.e., openness, problems) and child adjustment among youth with advanced or non-advanced cancer and comparison children. Methods: Families (n = 125) were recruited after a child's diagnosis/relapse and stratified by advanced (n = 55) or non-advanced (n = 70) disease. Comparison children (n = 60) were recruited from local schools. Children (ages 10-17) reported on communication (Parent-Adolescent Communication Scale) with both parents, while mothers reported on child adjustment (Child Behavior Checklist) at enrollment (T1) and one year (T2). Results: Openness/problems in communication did not differ across groups at T1, but problems with fathers were higher among children with non-advanced cancer versus comparisons at T2. Openness declined for all fathers, while changes in problems varied by group for both parents. T1 communication predicted later adjustment only for children with advanced cancer. Conclusions: Communication plays an important role, particularly for children with advanced cancer. Additional research with families affected by life-limiting conditions is needed.

Multiple Perspectives of Symptoms and Suffering at End of Life in the NICU.

BACKGROUND: Despite technological advances in the neonatal intensive care unit, not all infants survive. Limited research has focused on infants' symptoms and suffering at end of life (EOL) from multiple perspectives. PURPOSE: To compare retrospective parent report and electronic medical record (EMR) documentation of symptoms and to examine associations with parent perceptions of infants suffering at EOL. METHODS/SEARCH STRATEGY: Bereaved parents of 40 infants (40 mothers and 27 fathers) retrospectively reported on their perceptions of infant symptoms and suffering during the last week of life. EMRs were also reviewed. FINDINGS/RESULTS: Parents were asked about their observations of 23 symptoms. Within the 27 parental dyads, mothers reported 6.15 symptoms (standard deviation = 3.75), which was not significantly different from fathers' report of 5.67 symptoms (standard deviation = 5.11). Respiratory distress, agitation, and pain were most common according to mothers and EMR, whereas respiratory distress, agitation, and lethargy were most common according to fathers. Few differences were found between mothers, fathers, and EMRs. However, missing data (range: 0%-20%) indicated that some parents had challenges assessing symptoms. Parents reported that the worst symptom was respiratory distress. In addition, parents reported moderate infant suffering, which was correlated with the total number of symptoms. IMPLICATIONS FOR PRACTICE: Parents demonstrate awareness of their infant's symptoms at EOL, and these observations should be valued as they closely parallel EMR documentation. However, some parents did have difficulty reporting symptoms, highlighting the importance of education. IMPLICATIONS FOR RESEARCH: Future larger sample research should prospectively examine parent perceptions of infant symptom burden, suffering, and associations with other infant and parent outcomes (eg, decision making and grief).