Patterns of maternal distress among children with cancer and their association with child emotional and somatic distress

OBJECTIVE: To identify patterns of distress among mothers of children with cancer over the initial 6 months of treatment and to examine these patterns as predictors of child somatic and emotional distress. METHOD: Data were gathered regarding maternal perceived stress and affective distress from mothers of children (N = 65, mean age = 8.3 years) with cancer at 2 to 5 weeks postdiagnosis, then at 12 to 14 weeks and 22 to 24 weeks. Mothers and nurses provided indexes of child somatic and emotional distress at these assessments. RESULTS: Hierarchical and k-means cluster analyses revealed four distinct patterns of maternal distress: high, moderate, declining, and low. The high maternal distress group reported higher child emotional distress at all three points but higher child somatic distress only at the final assessment. Maternal distress group was unrelated to nurse-reported child distress. CONCLUSIONS: The identification of four empirically derived patterns of maternal distress may explain some of the variance in the literature regarding parental distress vis-à-vis pediatric cancer treatment and may have relevance to intervention efforts. Differences in the relations between maternal distress groups and mother- and nurse-reported child distress underscore the importance of collecting child distress data from multiple sources.     

Emotional distress of mothers of hospitalized children.

Compared 20 mothers of children hospitalized on a pediatric intensive care unit (PICU), 20 mothers of children hospitalized on a general pediatric medical surgical unit, and 20 mothers of nonhospitalized ill children on standardized measures of anxiety and negative moods. The mothers of children admitted to the PICU experienced greater state anxiety, depression, confusion, and anger than the other mothers. There were no differences between the mothers of children admitted to the general pediatric floor and mothers of nonhospitalized ill children. Maternal age, family stress, number of prior hospitalizations of the ill child, and the mother's rating of the severity of her child's illness were predictive of emotional distress. Results indicate that hospitalization of a mildly or moderately ill child per se may not necessarily increase maternal emotional distress.     

A meta-analysis of the effects of psychological interventions in pediatric oncology on outcomes of psychological distress and adjustment

OBJECTIVE: To estimate the effectiveness of psychological interventions in pediatric oncology on decreasing psychological distress and increasing psychological adjustment using meta-analytic methods. METHODS: A meta-analysis was conducted on 12 psychological intervention studies in pediatric oncology using a weighted least squares (WLS) approach and random effect models. RESULTS: Effect sizes significantly different from zero were found for parent distress (mean = 0.35, 95% CI = 0.20-0.49, n = 7) and parent adjustment (mean = 0.23, 95% CI = 0.07-0.40, n = 5). Effect sizes for child distress, child adjustment, parent-reported child distress, and parent-reported child adjustment were not significantly different from zero. CONCLUSIONS: Psychological interventions in pediatric oncology show promise in decreasing distress and improving the adjustment of parents of children with cancer but may have minimal effects for child outcomes. Methodological issues of intervention research are discussed.     

Psychological distress and the impact of social support on fathers and mothers of pediatric cancer patients: long-term prospective results

OBJECTIVE: To explore the effects of social support on psychological distress of parents of pediatric cancer patients using a prospective design over a 5-year period. METHODS: Parents of children diagnosed with cancer participated at diagnosis (T1), 6 months (T2), 12 months (T3), and 5 years later (T4). Instruments The General Health Questionnaire and the Social Support List (SSL) measuring amount of support, (dis)satisfaction with support, and negative interactions were administered. RESULTS: Psychological distress and amount of support received decreased significantly from diagnosis to T4. No significant change in (dis)satisfaction with support and negative interactions was found. Social support variables did not show any concurrent or prospective significant effect on mothers' distress at T4. Dissatisfaction with support showed a significant unique concurrent effect on fathers' distress at T4 and negative interactions had a prospective unique effect. CONCLUSIONS: Dissatisfaction with support and negative interactions that fathers experienced significantly affected their levels of psychological distress. No such effect was found for mothers.     

Assessing distress in pediatric intensive care environments: the COMFORT scale.

Managing psychological distress is a central treatment goal in Pediatric Intensive Care Units (PICUs), with medical and psychological implications. However, there is no objective measure for assessing efficacy of pharmacologic and psychological interventions used to reduce distress. Development of the COMFORT scale is described, a nonintrusive measure for assessing distress in PICU patients. Eight dimensions were selected based upon a literature review and survey of PICU nurses. Interrater agreement and internal consistency were high. Criterion validity, assessed by comparison with concurrent global ratings of PICU nurses, was also high. Principal components analysis revealed 2 correlated factors, behavioral and physiologic, accounting for 84% of variance. An ecological-developmental model is presented for further study of children's distress and coping in the PICU.     

Evidence-based assessment, intervention and psychosocial care in pediatric oncology: a blueprint for comprehensive services across treatment

OBJECTIVE: This paper describes the translation of psychological research into clinical services in pediatric oncology, based on two decades of research and clinical services in the Division of Oncology at The Children's Hospital of Philadelphia (CHOP). METHOD: Two models helpful in conceptualizing clinical care underlying intervention work at CHOP are summarized: The Pediatric Psychosocial Preventative Health Model (PPPHM; Kazak, 2006) and the Medical Traumatic Stress Model, specific to pediatric illness and injury (Kazak, Kassam-Adams et al., 2006). RESULTS: Integration of these two models offers a "blueprint" for development and evaluation of services to children with cancer and their families relevant for all families across the complete spectrum of disease and treatment. CONCLUSION: The dissemination of evidence-based psychosocial practice in pediatric oncology remains a large and challenging goal. The proposed blueprint may facilitate collaborative work to help assure that children with cancer and their families have access to evidence-based care.     

Aggression, antisocial behavior, and substance abuse in survivors of pediatric cancer: possible protective effects of cancer and its treatment

OBJECTIVE: To examine aggression, antisocial behavior, and substance abuse in young adult survivors of pediatric cancer (PCS) relative to case control peers (CC). METHODS: We obtained self-reports of current aggression, antisocial behavior, and lifetime substance use from 26 PCS (time off-treatment, M: = 56 months) and 26 CC using the Antisocial Behavior Checklist and the Drinking and Drug History. A report of current aggression and antisocial behavior also was obtained from primary caregivers using the Child Behavior Checklist. RESULTS: PCS self-reported significantly less illegal drug use and experimentation than CC. No significant differences emerged between groups for use of alcohol and tobacco nor for aggression and antisocial behavior. CONCLUSIONS: PCS are functioning as well as, or better than, CC in terms of aggression, antisocial behavior, and substance abuse. However, given the compromised health status of survivors, efforts should focus on further reduction of drug-related risk behaviors that may amplify organ damage or increase risk for further malignancies in this population.     

Brief report: the impact of maternal posttraumatic stress disorder symptoms and child gender on risk for persistent posttraumatic stress disorder symptoms in child trauma victims

OBJECTIVE: To longitudinally examine the impact of maternal posttraumatic stress disorder symptoms (PTSS) on child adjustment following a child's traumatic injury, focusing on child gender differences. METHODS: Forty-one child traumatic injury victims aged 8-18 years and their biological mothers were interviewed over two follow-ups (6 weeks and 7 months). Children were administered the Clinician-Administered Posttraumatic Stress Disorder (PTSD) Scale for Children and Adolescents (CAPS-CA), whereas mothers completed the CAPS. RESULTS: Six weeks post trauma, maternal PTSS were significantly related to PTSS in boys but not in girls. However, at 7 months, maternal PTSS were strongly related to child PTSS in both boys and girls. Significant 6-week maternal distress-child gender interactions suggested that maternal PTSS, especially avoidance, predicted greater 7-month PTSS but that this was primarily because of a significant relationship in females. CONCLUSIONS: Maternal distress was found to negatively impact subsequent child adjustment, particularly in females. These results underscore the importance of considering family-centered interventions for child PTSD, especially in girls.     

Brief report: Evaluation of an interactive intervention designed to reduce pediatric distress during radiation therapy procedures

OBJECTIVE: To evaluate the efficacy of an interactive intervention in reducing distress related to radiation therapy (RT) among pediatric cancer participants as measured by occurrence of sedation, observed behavioral distress (OBD), and heart rate (HR). METHODS: Seventy-nine children receiving RT simulation were assigned randomly to a STARBRIGHT Hospital Pals group (i.e., interactive intervention group; IG) or modified control group (MCG). The interactive intervention included filmed modeling, exposure to an interactive Barney character, and passive auditory distraction. RESULTS: Children in the IG experienced significantly lower HR when compared with MCG participants. No differences were found in terms of sedation or OBD. CONCLUSIONS: The interactive intervention was effective at reducing RT-related distress (as measured by HR) and would be a useful tool in pediatric radiation oncology settings.     

Neonatal social isolation alters both maternal and pup behaviors in rats

The development of emotional behavior is dependent on the early experiences of the infant and the quality of maternal care. In these experiments, the effects of social isolation during the preweaning period on both pup behavior and maternal responsivity were examined. In the first study, the number of ultrasonic vocalizations (USVs) emitted after brief maternal separation was measured in neonatal rats with differing histories of social isolation. The social isolation procedure consisted of 5 days of daily separation from the dam and littermates for either 3 or 6 hr. At both ages tested, socially isolated pups vocalized significantly less than control pups. In the second study, the effects of prior isolation either daily for 5 previous days (Chronic Isolation) or for 4 hr prior to testing (Acute Isolation) were examined in a T-maze choice test. Pup vocalizations in the presence of the dam and dams' maternal behavior were assessed. When the dam was confined to the start box or during the maternal free access period, both Chronic and Acute Isolates vocalized less than pups that had never left the home nest. Dams spent more time with and licked and groomed more frequently and for a longer time both Chronic and Acute Isolates compared to pups that had always been with dams in the home nest. These results suggest that early isolation experience can alter subsequent responses to separation stress in neonatal rats and that maternal behavior is sensitive to the prior experiences of offspring.     

Risk of posttraumatic stress symptoms: a comparison of child survivors of pediatric cancer and parental bereavement

OBJECTIVE: To compare the risk of posttraumatic stress (PTS) symptoms and the mediating effect of perceived future threat on the risk of PTS symptoms among survivors of pediatric cancer and children who had a parent die. METHODS: Seventy-eight children (39 survivors of cancer, 39 bereaved) completed self-report measures of PTS symptoms, depression, anxiety, and perceived risk of future threat for the event they experienced. RESULTS: The children who lost a parent reported significantly more PTS symptoms than the survivors of cancer. The effect of group status (survivor of cancer vs. bereaved) on PTS symptomatology was partly mediated by the children's perceived risk of future threat. CONCLUSIONS: The rate of PTS symptoms was found to be higher among children who had lost a parent than among survivors of pediatric cancer. This difference may partly be explained by their perceived risk of a future threat. Clinical implications are discussed.     

Parental distress during pediatric leukemia and posttraumatic stress symptoms (PTSS) after treatment ends

OBJECTIVE: To evaluate prospectively the association between parental anxiety during treatment for childhood leukemia and posttraumatic stress symptoms (PTSS) after treatment ends. A secondary goal is to explore concurrent variables associated with parental avoidance after treatment ends. METHODS: This is a longitudinal follow-up study of 113 parents of children treated for leukemia who previously participated in a study of procedural distress during treatment. Data included parental self-report questionnaires completed during treatment and after treatment. RESULTS: Using hierarchical multiple regression, we found anxiety during treatment to be a significant predictor of later PTSS for mothers, but not fathers. Anxiety, self-efficacy, posttraumatic growth and length of time since treatment ended were associated with parental avoidance. CONCLUSIONS: Highly anxious parents are at risk for PTSS and may benefit from approaches that decrease anxiety during treatment and afterward. Enhancing self-efficacy related to follow-up care and identifying positive aspects of the traumatic experiences are suggested as treatment approaches for families after cancer treatment.     

Brief report: pediatric cancer, parental coping style, and risk for depressive, posttraumatic stress, and anxiety symptoms

OBJECTIVE: According to the stress and coping goodness of fit model, parents' risk for psychological symptoms was hypothesized to decrease as a function of using emotional regulation and problem appraisal strategies more frequently, and to increase as a function of using problem-solving and avoidant behaviors more frequently to cope with an uncontrollable stressor--pediatric cancer diagnosis. METHODS: Parents (N = 150) completed measures of depression, PTSD, anxiety, and coping style. RESULTS: Regression analyses revealed that symptoms decreased as a function of using problem appraisal and an emotional regulation strategy (social support) more frequently; and increased as a function of using problem-solving strategies, avoidant coping (substance use), and another emotional regulation strategy (negative self-blame) more frequently. CONCLUSIONS: The findings provide some support for the model but suggest that the method of coping (e.g., social support) might be considered in addition to the focus of the coping strategy (e.g., emotional regulation).     

A comparison of distraction strategies for venipuncture distress in children

OBJECTIVE: To compare the effects of two pediatric venipuncture distress-management distraction strategies that differed in the degree to which they required children's interaction. METHODS: Eighty-eight 1- to 7-year-old children receiving venipuncture were randomly assigned to one of three treatment conditions: interactive toy distraction, passive movie distraction, or standard care. Distress was examined via parent, nurse, self-report (children over 4 years), and observational coding. Engagement in distraction was assessed via observational coding. RESULTS: Children in the passive condition were more distracted and less distressed than children in the interactive condition. Although children in the interactive condition were more distracted than standard care children, there were no differences in distress between these groups. CONCLUSIONS: Despite literature that suggests that interactive distraction should lower distress more than passive distraction, results indicate that a passive strategy might be most effective for children's venipuncture. It is possible that children's distress interfered with their ability to interact with the distractor.     

Child illness, the parenting alliance, and parenting stress

Assessed relationship between children's minor illnesses during the first 3 years of life and parenting stress in the 4th year. Also examined whether a good parenting alliance would compensate for or moderate this relationship. Parents of 56 3- to 4-year-olds completed parenting alliance and stress questionnaires. Child morbidity, assessed from medical records, was directly related to mothers' but not fathers' feelings of stress. The parenting alliance was more strongly related to parenting stress for fathers than for mothers. However, child morbidity and parenting alliance interacted in predicting child-related paternal stresses. While fathers in a poor alliance reported more stress, stress was unrelated to their children's illnesses; for fathers in a moderate to strong alliance, illness and stress were positively correlated. Even minor child illnesses appear to be a source of stress for parents.     

Long-term effects of postnatal manipulation on emotionality are prevented by maternal anxiolytic treatment in mice

This study investigated the role of maternal behavior on the long-term effects of postnatal manipulation (15 min of daily separation from the dam and exposure to clean bedding from Day 1 to Day 14 of postnatal life) on emotionality in the mouse. Mothers were treated with an antianxiety agent (Chlordiazepoxide: 5 mg/kg), daily upon removal of the litter from the nest. Emotionality in adult offspring was tested in the elevated plus maze. Mice manipulated during postnatal development were more explorative and less anxious than unhandled mice, but this effect was not observable in the offspring of Chlordiazepoxide-treated dams. No effect of maternal Chlordiazepoxide was observed in unhandled offspring. The pharmacological treatment of the mother did not affect either pups' ultrasonic calling during separation, or maternal behavior far apart from the daily manipulation sessions. By contrast, Chlordiazepoxide-treated dams were less responsive toward pups upon reunion following daily separation. This alteration of dams' behavior was not related to alterations in the amount of ultrasonic calls emitted by pups during reunion. Finally, when dams were daily injected with Chlordiazepoxide far apart from pups' removal, the pharmacological treatment was devoid of effects. These results support the view that the mother–infant interaction which follows separation plays a major role in determining the effects of postnatal manipulations on adult emotionality. © 1998 John Wiley & Sons, Inc. Dev Psychobiol 32: 225–234, 1998     

Perceived control as a predictor of distress in children undergoing invasive medical procedures.

Children's anticipatory attributional assessment of the source(s) of perceived control is hypothesized to play an important role in the etiology of distress in children undergoing invasive medical procedures. Four perceived control types, based on learned helplessness theory, are specified by a conceptual model that guides this research: Mutual, Powerful Other, Personal, and Unknown. Among 73 children between the ages of 4 and 18 having their blood drawn, it was predicted that children with an attributional analysis of unknown perceived source of control prior to the impending medical procedures would experience a heightened level of anxiety (procedure-related distress). As predicted, children with an anticipatory attributional assessment of unknown perceived control interfered with or extended the medical procedure significantly more (41%) than children who could attribute some perceived source of control (13%). They were also rated by themselves, the parents, and a trained clinical observer as manifesting significantly greater (p < .05) anticipatory procedural distress using both cognitive (subjective) and behavioral (objective) assessment perspectives. These findings were independent of children's age. This paper supports the need for additional theory-driven research and the importance of investigating the role of attributional variables in the etiology of procedure-related distress in children.     

Uncovering sources of maternal variability: Inherited and environmental contributions to maternal phenotype

Intergenerational patterns of parental behavior, especially maternal behavior, have been observed across mammalian species including humans, non-human primates, and rodents. These patterns are largely experience-dependent as opposed to genetically induced, with experiences in early-life serving an essential role in directing maternal behavior expressed later in life. Environmental conditions can also alter maternal behavior with consequences for offspring neurodevelopment and interactions with the next generation. Here, we describe effects of lineage during developmental environmental disruption using a limited bedding and nesting material manipulation during the first 2 weeks of life. Dams from three lineages were placed in environments containing either abundant nesting material or reduced nesting material. Environmental condition affected eight measures of maternal behavior and dam lineage affected 12 measures of maternal behavior during the first two postnatal weeks. Lineage, condition, and pup sex predicted pup body weight immediately following the manipulation, with lineage accounting for the largest portion of variance in body weight. Although from a limited sample, these data are the first to examine effects of lineage and environment simultaneously and suggest dam lineage may be a better predictor of maternal behavior than current environmental conditions with important implications for pup outcomes.