ABSTRACT
OBJECTIVE: Limited research has characterized cancer-related stress (CRS) among families of childhood cancer survivors. We examined the prevalence of CRS among survivors and caregivers, as well as its association with health risk perceptions (i.e., prognosis, risk for diminished quality of life) and views of survivor quality of life (QoL). METHODS: At five years post-diagnosis or relapse, survivors (n = 100; Mage = 15.84 years; 89% White), mothers (n = 127), and fathers (n = 59) reported their CRS. Perceived prognosis and risk for diminished QoL were rated on a 0%-100% visual analogue scale, while the PedsQL assessed QoL. RESULTS: CRS was low (M = 1.6-1.8, scale: 1-4); mothers reported greater stress than survivors, p = 0.038, d = 0.25. There was an indirect effect of survivors' perceived prognosis on their QoL through CRS, CI = 0.04 to 0.25, R2 = 0.32. Among mothers, there was an indirect effect of perceived prognosis/risk for diminished QoL on their reports of survivor QoL through CRS, CI = 0.03 to 0.23 and -0.15 to -0.03, R2 = 0.28 and 0.32, respectively. There were no indirect effects among fathers. CONCLUSIONS: CRS may be an important, modifiable factor that could improve survivors' QoL. Research is needed to examine how CRS changes over time to assess the utility of interventions among female survivors, mothers, and those with lower prognosis estimates.
Subject(s)
Cancer Survivors , Neoplasms , Humans , Female , Child , Adolescent , Quality of Life , Neoplasms/epidemiology , Prevalence , SurvivorsABSTRACT
Regulatory efforts are hypothesized to affect associations between emotions and physiology (i.e., concordance) to facilitate adaptive functioning. Assessing the role of coping on physiological-emotional concordance during ecologically relevant scenarios can elucidate whether concordance can serve as a biomarker of risk or resilience. The present study assessed self-reported coping as a moderator of minute-to-minute associations between autonomic nervous system activity and emotions (i.e., physiological-emotional concordance) in caregivers (N = 97) and adolescents (N = 97; ages 10-15) during a dyadic conflict task. Models included physiological variables (sympathetic, skin conductance level [SCL]; and parasympathetic, respiratory sinus arrhythmia [RSA]) and their interaction (SCL × RSA) as predictors of emotions, with coping variables as moderators. Caregivers' use of primary control coping (e.g., problem solving and emotional expression) and secondary control coping (e.g., cognitive reappraisal and acceptance) use in response to family stress predicted more positive emotional experiences during the laboratory conflict task. Adolescents' use of secondary control coping moderated the SCL-emotion association, such that increases in momentary SCL were associated with more positive emotion ratings for youth reporting higher secondary control coping. For youth who report more adaptive trait-level coping skills, momentary changes in SCL may reflect active engagement and attentiveness to facilitate more positive emotional experiences. Findings advance our understanding of the interrelationships between physiological responses and psychological experiences during relevant, interactive scenarios. Autonomic responses are differentially related to affective states depending on the coping strategies that adolescents employ, suggesting that concordance may be associated with intervention targets (i.e., coping skills).
ABSTRACT
BACKGROUND: While most research has largely focused on medical risks associated with reduced health-related quality of life (HRQOL) in survivors, sociodemographic and family factors may also play a role. Thus, we longitudinally examined sociodemographic factors and family factors associated with survivor HRQOL, including adolescent's cancer-specific stress, mother's general stress, and mother-adolescent communication. METHODS: Mothers (N = 80) and survivors (ages 10-23, N = 50) were assessed 5 years following initial diagnosis. Mothers completed measures regarding sociodemographic background adolescent's cancer-specific stress, mother's general stress, mother-adolescent communication, and adolescent HRQOL. Survivors also reported on their own HRQOL. Two hierarchical multiple regressions examined predictors of (a) mother's report of adolescent HRQOL, and (b) survivor's self-report of HRQOL. RESULTS: The final model predicting mother-reported adolescent HRQOL was significant, F(5,74) = 21.18, p < .001, and explained 59% of the variance in HRQoL. Significant predictors included adolescent stress (ß = -.37, p < .001), mothers' stress (ß = -.42, p < .001), and communication (ß = .19, p = .03). The final model predicting survivor-reported HRQOL was also significant, F(5,44) = 5.16, p < .01 and explained 24% of the variance in HRQOL. Significant predictors included adolescent stress (ß = -.37, p = .01) and communication (ß = -.31, p = .04). Sociodemographic factors were not a significant predictor of HRQOL in any model. CONCLUSION: Family stress and communication offer potential points of intervention to improve HRQOL of pediatric cancer survivors from mother and survivor perspectives. While additional research is needed, healthcare professionals should encourage stress management and strong mother-child communication to enhance survivors' long-term HRQOL. Such interventions may be complimentary to efforts targeting the known sociodemographic factors that often affect health.
Subject(s)
Cancer Survivors , Communication , Neoplasms , Quality of Life , Stress, Psychological , Humans , Adolescent , Female , Cancer Survivors/psychology , Male , Child , Neoplasms/psychology , Stress, Psychological/psychology , Young Adult , Adult , Mothers/psychology , Sociodemographic Factors , Mother-Child Relations/psychology , Follow-Up Studies , Longitudinal StudiesABSTRACT
BACKGROUND AND OBJECTIVES: The clinical diagnosis of Huntington disease (HD) is typically made once motor symptoms and chorea are evident. Recent reports highlight the onset of cognitive and psychiatric symptoms before motor manifestations. These findings support further investigations of cognitive function across the lifespan of HD sufferers. METHODS: To assess cognitive symptoms in the developing brain, we administered assessments from the National Institutes of Health Toolbox Cognitive Battery, an age-appropriate cognitive assessment with population norms, to a cohort of children, adolescents and young adults with (gene-expanded; GE) and without (gene-not-expanded; GNE) the trinucleotide cytosine, adenine, guanine (CAG) expansion in the Huntingtin gene. These five assessments that focus on executive function are well validated and form a composite score, with population norms. We modelled these scores across age, and CAP score to estimate the slope of progression, comparing these results to motor symptoms. RESULTS: We find significant deficits in the composite measure of executive function in GE compared with GNE participants. GE participant performance on working memory was significantly lower compared with GNE participants. Modelling these results over age suggests that these deficits occur as early as 18 years of age, long before motor manifestations of HD. CONCLUSIONS: This work provides strong evidence that impairments in executive function occur as early as the second decade of life, well before anticipated motor onset. Future investigations should delineate whether these impairments in executive function are due to abnormalities in neurodevelopment or early sequelae of a neurodegenerative process.
Subject(s)
Cognition Disorders , Huntington Disease , Adolescent , Child , Young Adult , Humans , Huntington Disease/complications , Huntington Disease/genetics , Executive Function , Cognition Disorders/complications , Brain , CognitionABSTRACT
PURPOSE: To quantify and compare the magnitude and type of neurocognitive dysfunction in at-risk children with central nervous system (CNS) tumors, acute lymphoblastic leukemia (ALL), and sickle cell disease (SCD) using a common instrument and metric to directly compare these groups with each other. METHODS: Fifty-three participants between the ages of 7 and 12 years (n = 27 ALL, n = 11 CNS tumor, n = 15 SCD) were enrolled and assessed using the NIH Toolbox Cognition Battery (NIHTCB). Participants with ALL or CNS tumor were 0-18 months posttherapy, while participants with SCD possessed the SS or Sß0 genotype, took hydroxyurea, and had no known history of stroke. RESULTS: Independent sample t-tests showed that participants with ALL and CNS tumor experienced greatest deficits in processing speed (ALL d = -0.96; CNS tumor d = -1.2) and inhibitory control and attention (ALL d = -0.53; CNS tumor d = -0.97) when compared with NIHTCB normative data. Participants with SCD experienced deficits in cognitive flexibility only (d = -0.53). Episodic memory was relatively spared in all groups (d = -0.03 to -0.32). There were no significant differences in function when groups were compared directly with each other by analysis of variance. CONCLUSIONS: Use of a common metric to quantify the magnitude and type of neurocognitive dysfunction across at-risk groups of participants by disease shows that participants perform below age-expected norms in multiple domains and experience dysfunction differently than one another. This approach highlights patterns of dysfunction that can inform disease- and domain-specific interventions.
Subject(s)
Anemia, Sickle Cell , Central Nervous System Neoplasms , Cognitive Dysfunction , Precursor Cell Lymphoblastic Leukemia-Lymphoma , Stroke , Child , HumansABSTRACT
Interactions with parents are integral in shaping the development of children's emotional processes. Important aspects of these interactions are overall (mean level) affective experience and affective synchrony (linkages between parent and child affect across time). Respectively, mean-level affect and affective synchrony reflect aspects of the content and structure of dyadic interactions. Most research on parent-child affect during dyadic interactions has focused on infancy and early childhood; adolescence, however, is a key period for both normative emotional development and the emergence of emotional disorders. We examined affect in early to mid-adolescents (N = 55, Mage = 12.27) and their parents using a video-mediated recall task of 10-min conflict-topic discussions. Using multilevel modeling, we found evidence of significant level-2 effects (mean affect) and level-1 effects (affective synchrony) for parents and their adolescents. Level-2 and level-1 associations were differentially moderated by adolescent age and adolescent internalizing and externalizing symptoms. More specifically, parent-adolescent synchrony was stronger when adolescents were older and had more internalizing problems. Further, more positive adolescent mean affect was associated with more positive parent affect (and vice versa), but only for dyads with low adolescent externalizing problems. Results underscore the importance of additional research examining parent-child affect in adolescence.
Subject(s)
Emotions , Parents , Humans , Adolescent , Child, Preschool , Child , Parents/psychology , Interpersonal Relations , Mood Disorders , Internal-External ControlABSTRACT
OBJECTIVES: We identified types of interventions used by bereaved family members and examined associations with demographic and medical factors. Furthermore, we examined associations between distress and intervention use among bereaved families. METHODS: Bereaved families (n = 85) were recruited from three children's hospitals 3-12 months after their child died of cancer. One eligible sibling (ages 8-17) per family was randomly selected for participation. During home visits 1-year post-death, parents reported on their own and the sibling's intervention use, helpfulness, and dose (self-help books, support groups, therapy, medication), and distress, defined as internalizing, externalizing, and total problems (Adult Self Report, Child Behavior Checklist). RESULTS: Fifty percent of mothers used medications (n = 43); utilization was low among fathers (17%, n = 9) and siblings (5%, n = 4). Individuals with more total problems were more likely to use medications (mothers: rpb = 0.27; p = 0.02; fathers: rpb = 0.32; p = 0.02; siblings: rpb = 0.26; p = 0.02). Mothers and siblings with more total problems used more services (r = 0.24; p = 0.03 and r = 0.29; p = 0.01, respectively). Among mothers, the overall regression was significant, R2 = 0.11, F(2, 80) = 4.954, p = 0.01; the deceased child's age at death was significantly associated with total services used (b = 0.052, p = 0.022). Among fathers, the overall regression was significant, R2 = 0.216, F(3, 49) = 4.492, p = 0.007; race and years of education were significantly associated with total services used (b = 0.750, p = 0.030 and b = 0.154, p = 0.010). Among siblings, the overall regression was significant R2 = 0.088, F(2, 80) = 3.867, p = 0.025; greater total problems were significantly associated with total services used (b = 0.012, p = 0.007). SIGNIFICANCE OF RESULTS: Although few background factors were related to intervention use, bereaved mothers and siblings may seek services if they have more distress. Healthcare providers should be aware of the types of services that are most often utilized and helpful to bereaved families to connect them with appropriate resources. Future research should investigate other predictors of intervention use and outcomes after the death of a child.
Subject(s)
Bereavement , Mental Health Services , Neoplasms , Child , Adult , Female , Humans , Mothers/psychology , Siblings/psychology , Neoplasms/therapy , Neoplasms/psychologyABSTRACT
BACKGROUND: The COVID-19 public health crisis has created abrupt and unparalleled disruptions to the daily lives of children and adolescents across the world, placing them at significant risk for developing symptoms of anxiety and depression. METHOD: The current study used two data collection periods to determine which types of COVID-19-related stressors were associated with the greatest risk of anxiety and depression symptoms in a community sample of children and adolescents in the United States (U.S.) from May-August 2020 (T1) to February-April 2021 (T2). Seventy-nine youth (ages 10-17; M = 13.41, SD = 2.10; 54.4% female) completed a battery of online standardized questionnaires about COVID-19 stress and psychiatric symptoms at T1 and 56 of these also participated at T2. RESULTS: The majority of children and adolescents reported experiencing the COVID-19-related stressors in multiple domains including daily routines, interpersonal relationships, education, finances, and health. A substantial proportion of the sample reported clinical levels of depression and anxiety symptoms at both T1 and T2. Multiple linear regression analyses revealed that, controlling for T1 anxiety and depression symptoms, T2 interpersonal stressors were significantly associated with elevated depression and anxiety scores at T2. CONCLUSIONS: The findings highlight the salience of social connection for children and adolescents, and may also underscore the risk associated with lockdown restrictions, social distancing, and school closures during the pandemic.
Subject(s)
COVID-19 , Depression , Adolescent , Child , Female , Humans , Male , Depression/epidemiology , Communicable Disease Control , Anxiety/epidemiology , Anxiety DisordersABSTRACT
BACKGROUND: Adolescent and young adult oncology (AYAO) patients and caregivers may experience significant psychosocial dysfunction and financial toxicity. Understanding early risk factors is critical to improving survivorship trajectories. METHODS: The authors conducted a cross-sectional study of baseline survey data from a prospective cohort of AYAO patient-caregiver dyads enrolled within 1 month of medical oncology treatment initiation. Posttraumatic stress symptoms (PTSS) were measured by the Impacts of Events Scale-Revised, and financial toxicity was measured with the Comprehensive Score (COst). The authors fit models of linear association between PTSS, financial toxicity, and other end points and pairwise associations of PTSS and financial toxicity within dyads. RESULTS: The analytic cohort contained 41 patients, 37 caregivers, and 34 complete dyads. Clinically-concerning PTSS were observed among patients (44%) and caregivers (52%). The median COst scores were 20.0 for patients (quartiles, 12.5-29.5) and 22.0 for caregivers (quartiles, 12.8-26.0), which were consistent with high financial toxicity (patients, 46%; caregivers, 44%). PTSS were positively associated with financial toxicity (P = .013 for patients, P = .039 for caregivers), subjective distress (P < .001 for all), depressive (P < .001 for all) and anxiety symptoms (P = .005 for patients, P = .024 for caregivers), and poorer quality of life (P < .001 for patients, P = .003 for caregivers). A significant paired association was not found in PTSS (Pearson correlation coefficient [PCC], 0.23; 95% confidence interval [CI], -0.15 to 0.56). Financial toxicity was positively associated within dyads (PCC, 0.65; 95% CI, 0.36-0.83). CONCLUSIONS: At diagnosis, AYAO patients and caregivers exhibit substantial PTSS, which are associated with greater financial toxicity and other psychosocial distress.
Subject(s)
Neoplasms , Stress Disorders, Post-Traumatic , Adolescent , Caregivers/psychology , Cross-Sectional Studies , Financial Stress , Humans , Medical Oncology , Neoplasms/psychology , Prospective Studies , Quality of Life/psychology , Stress Disorders, Post-Traumatic/diagnosis , Stress Disorders, Post-Traumatic/epidemiology , Stress Disorders, Post-Traumatic/etiology , Young AdultABSTRACT
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.
Subject(s)
Neoplasms , Parenting , Child , Child Behavior/psychology , Female , Humans , Male , Maternal Behavior , Mothers/psychology , Parenting/psychology , RecurrenceABSTRACT
PURPOSE: Pediatric cancer survivors may have lower quality of life (QoL), but most research has assessed outcomes either in treatment or long-term survivorship. We focused on early survivorship (i.e., 3 and 5 years post-diagnosis), examining the impact of CNS-directed treatment on child QoL, as well as sex and age at diagnosis as potential moderators. METHODS: Families of children with cancer (ages 5-17) were recruited at diagnosis or relapse (N = 336). Survivors completed the PedsQL at 3 (n = 96) and 5 years (n = 108), along with mothers (101 and 105, respectively) and fathers (45 and 53, respectively). The impact of CNS treatment, sex, and age at diagnosis on child QoL was examined over both time since diagnosis and time since last treatment using mixed model analyses. RESULTS: Parent-report of the child's total QoL was in the normative range and stable between 3 and 5 years when examining time since diagnosis, while child reported QoL improved over time (p = 0.04). In terms of time since last treatment, mother and child both reported the child's QoL improved over time (p = 0.0002 and p = 0.0006, respectively). Based on parent-report, males with CNS-directed treatment had lower total QoL than females and males who did not receive CNS-directed treatment. Age at diagnosis did not moderate the impact of treatment type on total QoL. CONCLUSIONS: Quality of life (QoL) in early survivorship may be low among males who received CNS-directed treatment. However, this was only evident on parent-report. Interventions to improve child QoL should focus on male survivors who received CNS-directed treatment, as well as females regardless of treatment type.
Subject(s)
Cancer Survivors , Neoplasms , Adolescent , Child , Child, Preschool , Female , Humans , Male , Neoplasms/drug therapy , Quality of Life/psychology , Surveys and Questionnaires , Survivors , SurvivorshipABSTRACT
The accumulation of socioeconomic stressors, such as being a single parent and having a limited income, is associated with childhood maladjustment and prospective poor health. Evidence suggests both positive and negative parenting strategies (e.g., warmth and praise; criticism and neglect) may account for the relationship between socioeconomic adversity and child outcomes. However, despite the common co-occurrence of parental depression and socioeconomic stress, models of cumulative socioeconomic risk and parenting have yet to be tested in parents who are also coping with depression. In a sample of children whose parents have a history of depression, this study extends findings from a previous report (i.e., Sullivan et al. in J Fam Psychol 33:883-893, 2019) to test whether behavioral observations of parenting account for the association between a cumulative risk index of socioeconomic stress and child psychological problems in the same sample of 179 children (Mage = 11.46 years, SDage = 2.00) of parents with depression. Both positive and negative parenting accounted for the relationship between socioeconomic risk and both child- and parent-reported externalizing problems, whereas no evidence emerged for parenting accounting for the relation between cumulative risk and internalizing problems. This study highlights the central role socioeconomic stress plays in child maladjustment among parents coping with depression, as well as how parenting may be a critical mechanism linking socioeconomic stress and child externalizing problems.
Subject(s)
Depression , Parenting , Child , Child, Preschool , Depression/psychology , Humans , Parent-Child Relations , Parenting/psychology , Parents/psychology , Prospective StudiesABSTRACT
The aim of this study was to examine the impact of end-of-life (EoL) circumstances on grief and internalizing symptoms among bereaved siblings. Bereaved families (N = 88) were recruited from three sites 3-12 months (M = 11.57, SD = 3.48) after their child's death from cancer. One sibling per family aged 8-17 years (M = 12.41, SD = 2.64) was randomly selected to participate. Families completed measures of siblings' grief and internalizing symptoms, as well as a structured interview about circumstances surrounding the death. Mother and sibling reports of EoL circumstances were generally concordant, except there was a discrepancy between mothers and children about whether or not children expected their sibling's death (t(75) = 1.52, p = .018). Mother reports of sibling internalizing symptoms were above the normative mean (t(83) = 4.44, p ≤ .001 (M = 56.01 ± 12.48), with 39% (n = 33) in the borderline/clinical range. Sibling opportunity to say goodbye was associated with greater grief-related growth (t(79) = - 1.95, p = .05). Presence at the death and wishing they had done something differently were both associated with greater grief (t(80) = - 2.08, p = .04 and t(80) = - 2.24, p = .028, respectively) and grief-related growth (t(80) = - 2.01, p = .048 and t(80) = - 2.31, p = .024, respectively). However, findings were primarily unique to sibling report, with few mother-reported effects. The adjustment of bereaved siblings may be affected by certain modifiable circumstances surrounding the death of their brother or sister. A proportion of bereaved siblings had elevated internalizing symptoms irrespective of circumstances at EoL. Further work is needed to understand predictors of adjustment among bereaved siblings to provide better support and optimize their outcomes.
Subject(s)
Bereavement , Neoplasms , Adolescent , Child , Death , Grief , Humans , Male , SiblingsABSTRACT
BACKGROUND AND PURPOSE: Individuals with sickle cell anemia experience cognitive deficits, even in the absence of cerebral infarcts or strokes. This study tested the hypothesis that elevated cerebral blood flow and oxygen extraction fraction are associated with lower executive function in individuals with sickle cell anemia. METHODS: Three-Tesla brain magnetic resonance imaging was performed, including anatomic, gray matter cerebral blood flow, and global oxygen extraction fraction imaging. Executive function was measured using the working memory index from an age-appropriate Wechsler battery and tasks from the National Institutes of Health Toolbox Cognition Battery. Bivariate and multivariate models were examined (significance: P<0.05). RESULTS: Fifty-four participants (age range=6-31 years) with sickle cell anemia were enrolled. Hematocrit was positively related to fluid cognition, cerebral blood flow was inversely related to working memory and inhibitory control, and oxygen extraction fraction was inversely related to processing speed. Associations remained significant in multivariate analyses controlling for age, income, and infarcts. CONCLUSIONS: Elevated cerebral blood flow and oxygen extraction fraction, markers of hemodynamic impairment, are associated with deficits in executive function in individuals with sickle cell anemia.
Subject(s)
Anemia, Sickle Cell/physiopathology , Brain/physiopathology , Cerebrovascular Circulation/physiology , Executive Function/physiology , Adolescent , Adult , Anemia, Sickle Cell/diagnostic imaging , Anemia, Sickle Cell/psychology , Brain/diagnostic imaging , Child , Cognition/physiology , Female , Hemodynamics/physiology , Humans , Magnetic Resonance Imaging , Male , Memory, Short-Term/physiology , Neuropsychological Tests , Young AdultABSTRACT
OBJECTIVE: Providing opportunities to communicate about possible cancer recurrence may be adaptive for youth in remission, yet parents may experience difficulty guiding discussions related to fears of cancer recurrence (FCR). This study aimed to characterize mother-child discussions about potential cancer recurrence during post-treatment survivorship and to determine predictors of maternal communication. METHODS: Families (N = 67) were recruited after the child's initial cancer diagnosis (age 5-17 years) and mothers self-reported their distress (post-traumatic stress symptoms; PTSS). During survivorship 3-5 years later, mothers were video-recorded discussing cancer with their children. Presence and length of discussion about potential cancer recurrence, triggers for FCR, expressed affect, and conversational reciprocity were examined. Hierarchical regressions were used to assess maternal PTSS near the time of cancer diagnosis and child age as predictors of maternal communication. RESULTS: Three-quarters of dyads spontaneously discussed risk for or fears about cancer recurrence; mothers initiated the topic more frequently than their children. Dyads discussed internal (bodily symptoms) and external (medical, social) triggers of FCR. Higher maternal PTSS at diagnosis predicted significantly lower levels of maternal positive affect (ß = -0.36, p = 0.02) and higher levels of maternal negative affect (ß = 0.30, p = 0.04) during discussion of recurrence 3-5 years later. Older child age significantly predicted higher levels of maternal negative affect (ß = 0.35, p = 0.02). Higher maternal PTSS at diagnosis predicted shorter discussions about recurrence for younger children (ß = 0.27, p = 0.02). CONCLUSIONS: Understanding predictors and characteristics of mother-child discussions about recurrence can guide family-based FCR interventions, particularly those promoting communication as a supportive tool. Both maternal PTSS and child age are important to consider when developing these interventions.
Subject(s)
Neoplasms , Stress Disorders, Post-Traumatic , Adolescent , Child , Child, Preschool , Communication , Female , Humans , Mother-Child Relations , Mothers , SurvivorshipABSTRACT
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.
Subject(s)
Brain Neoplasms , Cancer Survivors , Social Adjustment , Adolescent , Anxiety , Brain Neoplasms/psychology , Brain Neoplasms/therapy , Central Nervous System , Child , Child, Preschool , Cranial Irradiation , Depression , Fathers , Female , Humans , Male , Mothers , Neoplasm Recurrence, LocalABSTRACT
OBJECTIVE: Despite calls to increase prognosis communication for adolescents with cancer, limited research has examined their perceptions of prognosis as compared with their parents. We assessed adolescents' understanding of their prognosis relative to parents and oncologists. METHODS: Families of adolescents (aged 10-17) were recruited at two pediatric institutions following a new diagnosis or relapse. Seventy-four adolescents, 68 mothers, and 40 fathers participated at enrollment; 76 adolescents, 69 mothers, and 35 fathers participated one year later. The adolescent's primary oncologist reported on prognosis only at enrollment. Participants rated the likelihood of the adolescent's survival in five years, as well as reporting prognosis communication and sources of information. RESULTS: Most oncologists (65%) and fathers (63%) discussed prognosis in numerical terms with the adolescent at baseline, which was greater than mother report (49%) of discussions of numerical prognosis with adolescents. Adolescents reported a better prognosis than oncologists, but comparable with mothers at diagnosis and one year. Adolescents' prognosis estimates were stable over time (P > .05). At diagnosis, adolescent-father (P = 0.025) and adolescent-oncologist (P < 0.001) discrepancies were larger for youth with advanced than non-advanced cancer. Adolescents whose parents received numerical prognosis estimates from the oncologist, and whose fathers reported providing numerical prognosis estimates had more accurate understandings of prognosis (P < 0.05). CONCLUSIONS: Adolescent prognosis estimates were comparable with those of parents at diagnosis and one year but more favorable than that of oncologists. Although additional research is needed, results suggest discrepancies in prognosis estimates between family members and oncologists, particularly for adolescents with advanced cancer.
Subject(s)
Communication , Neoplasms/pathology , Neoplasms/psychology , Oncologists/psychology , Parents/psychology , Adolescent , Child , Female , Follow-Up Studies , Humans , Longitudinal Studies , Male , Neoplasms/therapy , Prognosis , Surveys and QuestionnairesABSTRACT
OBJECTIVE: Huntington's disease (HD) is an autosomal dominant neurodegenerative disease that presents significant challenges to family communication. The investigators examined observations of communication between parents with HD and their offspring talking about the challenges of HD and explored potential correlates of their communication. METHODS: The sample included parents with HD and their adolescent and young-adult offspring (N=64). Parent communication and chorea were independently coded from video recordings. Parents and offspring completed working memory assessments and self-reports of neuropsychiatric symptoms, stress, and coping. RESULTS: Evidence was found for the association of observed parent-offspring communication with disease markers, psychosocial characteristics, and neurocognitive function. For parents, disease markers and working memory were correlates of communication, whereas offspring's psychiatric symptoms, stress, and coping were associated with their communication. CONCLUSIONS: These findings have potential implications for clinical interventions to enhance communication and quality of life for HD families.
Subject(s)
Adaptation, Psychological , Communication , Family/psychology , Huntington Disease/psychology , Neurobiology , Adolescent , Adult , Child , Female , Humans , Male , Memory, Short-Term/physiology , Self Report , Young AdultABSTRACT
OBJECTIVE: To identify coping trajectories from diagnosis through survivorship and test whether particular trajectories exhibit better health-related quality of life (HRQOL) at 5 years post-diagnosis. METHODS: Families of children with cancer (ages 5-17; M = 10.48, SD = 4.03) were recruited following a new diagnosis of cancer (N = 248). Three follow-up assessments occurred at 1-year (N = 185), 3-years (N = 101), and 5-years (N = 110). Mothers reported on children's coping using the Responses to Stress Questionnaire for Pediatric Cancer. Survivor HRQOL was measured at 5-year follow-up using self-report on the PedsQL 4.0. Longitudinal patterns of coping were derived using Latent Class Growth Analysis and mean-levels of survivor-report HRQOL were compared across classes. RESULTS: Two primary control coping trajectories emerged, "Moderate and Stable" (50%) and "Low-moderate and Decreasing" (50%), with no significant differences in HRQOL across trajectories. Three secondary control coping trajectories emerged, "Moderate-high and Increasing" (54%), "Moderate and Stable" (40%), and "High and Increasing" (6%), with survivors in the last trajectory showing better HRQOL. Two disengagement coping trajectories emerged, "Low and Stable" (85%) and "Low and Variable" (15%), with no significant differences in HRQOL across trajectories. CONCLUSIONS: Coping trajectories were relatively stable from diagnosis to 5 years. A small group of survivors with high and increasing secondary control coping over time, per mother-report, reported better HRQOL. Future research should consider tailoring coping interventions to children with cancer to improve survivors' HRQOL.
Subject(s)
Cancer Survivors , Neoplasms , Adaptation, Psychological , Adolescent , Child , Child, Preschool , Female , Humans , Quality of Life , SurvivorsABSTRACT
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.